It has been so quiet this weekend. The kids are gone to their father's house and my house it silent. I am resting up as I know that they are coming back tomorrow morning.

Issac's destruction has been on hold for a couple of days before he left so maybe getting rid of his bed was a step in the right direction.

We lost an older tv this week. It was an older one, so we are probably due a new one, but I am thinking of vaca first so that will be put on hold for a couple of weeks. We will have to see how the vaca goes. 

All is quiet tonight and I am going to go enjoy it!

Just so every reader knows "up front" who this opinion is coming from, (FULL Disclosure), let me offer a little biographical background about myself. I am a 51 year old male who was diagnosed with FULL BLOWN Autism, (NOT Aspergers syndrome). In First grade, the school psychologist, (this was back in the early 1960s), said I was "so mentally retarded that I was UNeducateable and needed to be in an institution for the rest of my life". The school system wanted to "throw me out of school and, basically, lock me away for the rest of my life. My mother resisted, fought for my rights, (this was many years BEFORE IDEA, and convinced the school system to let me stay.  In second grade, my mother begged the school for speech therapy for me. The school Psychologist replied "Well Mrs. Abrams, we would hate to WASTE a speech therapist's valuable time on some one who is to dumb to have any thing to say". My mother saved her spare change in a cookie jar and paid a private speech therapist to work with me. I finally started talking after six and a half years of being completely silent. I was the school out cast, until middle school, and made my first friend at fourteen years old. My grades were mostly Ds and Fs.

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Some parents see benefits from Lupron, a drug used to chemically castrate sex offenders and for endometriosis and prostate cancer. But mainstream experts condemn the protocol, marketed by 2 doctors.

 Reporting from Chicago -- Desperate to help their autistic children, hundreds of parents nationwide are turning to an unproven and potentially damaging treatment: multiple high doses of a drug sometimes used to chemically castrate sex offenders.  read more »

Employees Inspire Plan to Help People Continue Pfizer Therapy During Unprecedented Economic Times  NEW YORK--(BUSINESS WIRE)--Pfizer Inc announced today that it will launch an innovative program to help eligible unemployed Americans and their families who have lost their health insurance maintain access to their Pfizer medicines for free. The inspiration for the new program, called MAINTAIN (Medicines Assistance for Those who Are in Need), was generated by Pfizer employees who were witnessing friends, family and neighbors struggle to make ends meet after losing their jobs.  "We all know people who have been laid off recently and have lost their health insurance, making it difficult for them to pay for health care," said Dr. Jorge Puente, Pfizer's regional president of Worldwide Pharmaceuticals, a leading champion of the initiative. "We thought there must be some way we could help recently unemployed people who are taking Pfizer medicines to continue treatment during these challenging economic times."

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More than once, I've heard parents, researchers and practitioners say, in essence, "We know this method [whatever it may be] works to help kids with autism, because we use it and see the results. Why take time away from treating kids to do expensive, time-consuming research to prove what we already know?"

Of course, the answer to this question is - there are many excellent reasons for spending all that "extra" time and money to validate the safety and efficacy of a treatment for autism. Here are just a few.

Validation of the Method. You and other fellow travelers may be absolutely certain that it's the special drug, therapeutic technique or diet that's making all the difference. But the truth is - you don't KNOW what's making the difference unless you conduct double-blind research. The reasons for this include the fact that kids with autism usually develop and grow with or without treatment; parents often use more than one treatment at once; parents and researchers are both anxious to see positive results, and thus tend to see them whether or not they occur (this is often called the placebo effect).

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(CNN) -- Thomas the Tank Engine, whose television adventures on the fictional island of Sodor have delighted children around the world for years, is now on a real-life mission to help kids with autism.

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IN mid-2007, I set off to meet with geneticists, epidemiologists and doctors who specialize in researching and treating autism. I was seeking a novel therapy for my 42-year-old autistic younger brother Noah. I was also looking to discover how heightened awareness of autism — it is now among the most financially successful and mediagenic diseases ever, with hundreds of millions of dollars a year going to research, and regular press coverage — might have resulted in new and innovative programs for adult autistics like Noah.

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He's "a little bit of a mini-genius," Clark says, but like many autistic children, JW doesn't speak at all.

Desperate to communicate with him, she considered buying a specialized device like the ones at his elementary school in Lincoln, Neb. But the text-to-speech machines are huge, heavy and expensive; a few go for $8,000 to $10,000.

Then a teacher told her about a new application that a researcher had developed for, of all things, the iPhone and iPod Touch. Clark drove to the local Best Buy and picked up a Touch, then downloaded the "app" from iTunes.

Total cost: about $500.

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Perz mentioned the other day that I posted pics awhile back of things we'd done to make our home safer. The pics are still there, I just checked. We've done things like block off our fireplace, my husband has cut doors in half. We've done all kinds of things. Hope the pics help =)

This child of mine! He insisted on being in bed all day, not eating. I woke him up to one of his favorite crappy dinners I normally wouldn't let him indulge in, and he refuses to eat and goes back to bed. Well he comes running out about 5 minutes ago, covered in the innards (stuffing) of his one and only Gerard the Giraffe. If that isn't morbid enough, I noticed blackness in his ears. Upon closer examination I see that he has stuffed dirt from our plant deep into his ears. What the hell? I better be able to clean this out on my own. Just over a week ago I spent 11 hours in the hospital with him and that was enough hospital time for me.

Dirt? Seriously. Ughhh.

I guess that plant will be moving to the balcony.

This big tub was emptied of toys and sitting in the hall.  Michael decided he needed it.  He dragged his favorite comforter and a bunch of pillows and put them in the tub.  He climbed in it and promptly fell asleep, all nestled in a bed he made himself.  I am going to let him sleep in it tonight if he wants while I lay on the couch next to him and see how he sleeps at night here.  He knew what he needed and this is pretty darn exciting!

Hi I'm new to the blog, trying to reach out to others who may have similar situation.  My daughter is almost 13. She has been having trouble going to visit dad at his house for some time now.  She is having everything from emotional meltdowns, to OCD behaviors, increased anxiety, pulling her hair, headaches because she is not coping with arrangement.  We have a Parent Coordinator as part of divorce who is making decisions on what she has to do and it is not working.  Dad is not willing to address situation because he thinks she should just love him and not have an issue going to his  house to partake with his family, and just wants to characterize it as 'mom brainwashing her'.  The truth is that is not the case and I work very hard to ensure she has a good relationship with him, but I do not see him reacting to her needs in a way she can handle, which I think is part of the problem.

I would appreciate any insight or advice...

Hey guys, Just letting you in on the gluten free product that I've just found out about! Its called Zoelife.  Its a yummy drink mix that pertains all of the fruits and vegetables that one is advised to retain in one day.  We all live such hectic lives that its impossible to get the appropriate amount of servings we are suppose to have.  More importantly....this drink mix is gluten free which is perfect for the autism diet!  This drink serves two purposes for you...Get your kids all the fruits and veggies they need while remaining gluten free!   This company is also coming out with gluten free pop-cycles and baby food in the near future.  Also, if any of you are interested in getting in on earning extra money and even growing a successful career with the company Zoegetics please contact me at www.triston_braddy@yahoo.com or www.zoegal.com.  Its the perfect way to get involved in a growing market that could benefit you in many ways!

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I am curious about the use of white noise with autistic kids and sleeping issues.  I am wondering if others could share their experiences with me about this topic.  I have read a bit about it, and Michael and Kaylee's OT suggest we try it.  I am looking into getting a white noise product, but would love to have suggestions.  I thought of just using a fan for cost effective purposes, but I only have the kind that sits on the floor.  I would not want that in their room.  They sleep in toddler beds and the thought of them playing with it and getting hurt tells me I need to think of a more creative plan.  I am thinking we could try mounting a small fan on the wall....does anyone have thoughts to share on this topic.  Does white noise help you child sleep?  Is is worth the money to invest in a white noise machine?  Do you know of a particular brand that is better than another?

I am so excited!  Miss Lisa, the twins' developmental therapist found a store that sells the new gluten free honey rice chex cereal!  She is bringing us a box on Monday!  I so hope they like it so I can get them off of the apple jax kick they are on...I try to stay gluten free as much as possible, but with picky eaters it is quite a challenge.  Lots of the snack products I wouldn't eat if I was gonna croak from hunger.  There are a few things that do taste really good.  Their gluten free m and m type candies are pretty good.  The gluten free bacon is excellent.  The yogurt covered pretzels are one of Kaylee's favorites.  I keep trying to get them to eat vegetables, but it is a no go for now still.  I can sometimes get Kaylee to eat strawberries.  The only fruit Michael eats is in the gluten free Sunkist fruit snacks.  We are having a nurtitionist visit us next week from the school to toss ideas around with us.  Perhaps we can come up with some strategies together.  You can not exactly hide green beans in the dry foods my kids eat.  I tried again today to get Michael to try some applesauce from a spoon but we just pushed me away and splattered it everywhere and then screamed because some got on is arm.  These kids are so interesting.  They keep me thinking, though. 

My son was diagnosed on the spectrum in March of last year.  He was 2.5.  After diagnosis we were directed to the First Steps program in Missouri which is therapy and special education for children ages birth to three.  At three, which was November of this past year, he was enrolled in the Spec Ed program at the local elementary school.  From November until May he attended 1/2 days at the pre-school.  He received speech and occupational therapy.  Well school ended on the 22nd of May and now my son is not going to receive any type of therapy for the next 2.5 months.  My state is one of those that is refusing to pass the insurance reform bill for autism so it is unlikely that I can afford private therapy.  Does anyone know who I contact about continuing his therapies even though school is out for the summer.  It seems unreasonable to me that he wouldn't continue to receive services.  I am at a loss and getting more frustrated each day!

The only way I know how to describe the feelings that rush through me when Michael awakens suddenly, screaming and will not stop for sometimes almost 45 minutes is that if is not unlike when your baby is a newborn and you can not figure out why he or she will not stop crying.  You change the diaper, burp him or her, check for anything poking the baby, swaddle them, sing, jiggle....and the list goes on and on and you can not get the infant to stop crying.  You rack your brain, you are so tired, and the screaming continues.  You hand the baby off, the crying goes on and on.  This is how it is for Mickey and me when Michael wakes up and will not stop crying.  Except it is almost worse, because at his age, if he were not autistic, he could perhaps articulate, say something to let you know what is wrong.  "Owie, no, cup..." something.  But he flops around on the floor.  He runs to you to hold him with his three blankets and pillow, then when you hold him he throws himself backwards.  He rolls around screaming and nothing we do stops it.  He just is out of synch about something we cannot reach.  Eventually exhaustion takes over and you can lightly tickle his arms and he calms down...then he will swing and babble with a drink and stay awake for a couple hours.  Tonight we are starting something different with the melatonin for him.  Instead of using it to get him to go to sleep, we are going try letting him fall asleep naturally and use the melatonin when he first wakes.  He always wants a drink when he wakes, so this works out.  We will see what happens!

My son has been delightfully surprising me lately with his wonderful sense of humor.  Tonight, as I was reading a book to the twins, he started joking around with me.  The book would say, for example, "This is a cow.  What does the cow say?"  Instead, of saying "Moo" Caden decided it would be funny to make another animal sound. That was followed with him rolling on the ground in a heap of belly laughs.  It was hilarious and so sweet just the same.  He kept telling me "I'm funny."  "Mama, I make you laugh."  I feel so blessed that he is able to joke with me.  Sometimes I just stand in awe by how far he has come in such a short while.  I recognize there are many current hurdles to conquer, and that the future is unknown, but it is days like this that I start to let my guard down and hope . . .  It reminded me that I must never let my reservoir of hope get empty.

I just wanted to welcome all the new people. Some of us are on Facebook. Im under Cindy Kunz Legros if you want to be buddies. Nice folks on here. Im in Tx.

My son Rhett is so violent to himself. He will fling himself back, head first on to a hard surface. He will slap, pinch, and bite himself. He scratches his face. He tugs on his ears so hard they are bruised and purple. I know that people must think we abuse him. To make matters worse, last week he amazingly pulled his bedroom television (perched on a dresser, and so large I couldn't lift it) down onto his foot. He never seems to feel pain and that night was no exception. Chad heard the TV fall and went to make sure Rhett was okay. Rhett was just standing there looking bewildered, and jumped back into his bed. He didn't make a peep!

In the morning, as I was changing his first diaper of the day, I noticed his foot was covered in blood. Then I noticed his big toe was hanging on by a thread of skin, and jutting out in an entirely wrong direction. He had walked out of his room so clamly! So quickly.

We spent 11 hours in the hospital. He had to have his big tow sewn on securely, and two bones in his foot were broken. To do his stitches they had to sedate him with ketomine. To sedate him, 6 nurses and doctors with myself included fought to hold him down. It was sad, but it goes to show how very strong he is. When all was said and done Rhett came home with a practical black cast. Practical because it hides the dirt and matches everything! Mommy's choice. He didn't care to make the decision.  read more »

Tonight was a good night. The kids got to spend time with their father, which sounds like it is going to be limited from now on. Unfortunately I have never been in this situation and honestly never thot I would be.Their father was indicted a week ago on two counts of delivery of cannabis, which is a class 3 felony. I never ever would have thot that he would get involved in it. I know people who have an ear in that world and they have been telling me that he was getting in. I in turn was telling him if he was in it, to get out. Well, he will soon be on the inside it sounds like. I do not know how to tell the kids this. I don't know how to make them understand. I am afraid that visitation is impossible. There is no way the kids will sit still for a prison visit. I know that anyone who has ever visited a prison will know exactly what I am talking about. So, you think maybe drawing a cartoon for them about him going to prison will work? Being divorced, when he took the kids for the weekend, it gave me a break. Now, I am not going to get that. I am sooooo not looking forward to this summer. It will be a long one. I am worried about how the kids are going to react. I am also going to lose child support. Yeah, boo hoo me, but when it is the reason I am able to stay home with the kids and not have to leave them with a stranger, people that is a good thing.

For those of you who are following about Issac being so destructive, we had a really good couple of days. We spent tonight coloring a Scooby Doo coloring book. I am doing the coloring, he is giving me the colors and pointing out where they go. I was so proud of him for knowing all of that info and being able to help me color everything correctly. We had a good time. Yes, he colors, but he doesn't usually share that fun with me.  I was glad he did.

 

I must say that I feel a lot better about my relationship with Nana, Mickey's mom, Sherri than I have in about 6 months.  I feel like she gets it now about Kaylee and Michael.  Today we had a long talk where I told her that I know Kaylee is autistic as well.  I did not meet argument from her at all, as I did at first about Michael.  I think her big fear is gone.  She still cried.  I told her I cry about it too, sometimes.  She said she did not know I cried about it.  I assured her that having autistic twins is hard for me, that it does make me sad, of course, but that it is not like it is some fatal disease.  We have caught it young, and we are being proactive about it.  I assured that I do get scared about the future for them too.  I told her she can cry about it to me whenever she needs to, but that we have to be strong together.  She told me I can use her car to take Kaylee to the neurologist this summer to get her diagnosis down on paper.  It was a feel good kinda morning with her.  She did ask me if Mickey has accepted it, and I said "You know your son, heck no!"  She said she will help me in any way to get him to understand.  It will just take time.  Sherri also said that she is going to get the kids to the park, one at a time over the summer, once a week, she hopes.  I appreciated that she sees that the kids need to get out just as much as I do.  I feel really good after having this talk today.  I hope we are on our way to regaining the closeness we once had. 

 We got our son a cell phone so he could keep in touch  We put our cell phone numbers and home number on speed dial so he would only have to push one number. Well I think we have created a cell phone monster LOL  Before he would call home and the staff member would dial the number for him. Well it did not take him long to get into the one number push mode.  So far 10 calls for Dad 8 for me and 3 for the house phone.  We are glad he can call home but since the conversation is limited we are tired and he gets very upset when we don't answer quickly.  We will make a call to one of his workers to limit the phone .  Tec and autism sometimes don't mix well  but we still have our sense of humor

Ok, so I have twin toddlers.  I am wondering if others have had difficulty telling the difference between an autistic meltdown and a temper tantrum, you know the terrible twos. I honestly sometimes can not tell the difference.  Do the two literally go hand in hand at this age? 

Katie, our child social worker, confirmed for us yesterday that Lucas has an ASD - PDD-NOS.  Of course, this was after talking with her, not filling out forms yet.  We go in June to the developmental & behavioral psychiatrists, where we will hopefully glean more specifics, but he could just be a mish-mash of the NOS too.  The label is only important to us insofar it can tell us what therapies we need to look into.  Prior to this, the OTs and many others have said he'll grow out of some of this stuff we're dealing with in SPD, but I'm sorry, while he does improve, there are things he is NOT cognitively or behaviorally getting, and his delays will start showing significantly in the next few months I think as I see his neighborhood friends (one is 2 days older, another 5 mo younger) beginning to mature beyond LJ.  I know SPD can interfere with learning, but there are moments I can almost see him not able to get his brain to receive & send information properly.  read more »

This is my introduction to Rhett.

He isn't actually a baby, but he looks like one to me. He will be 3 in September.

He really is a clever boy, but aside from the very basics, he doesn't really do anything a typical 2.5 year old would do. He doesn't even like to play most times. He barely eats, barely sleeps. He does love to dance and sing... as much as a non-verbal person can sing. He doesn't use words but he makes a lot of sounds. He is constantly babbling about something. Right now has been a difficult time for us. His dad took off and we moved in a short time frame, so he is kind of acting out.

He loves to play with my jewelery. Amazingly, he has never broken any of it. I wish I could say the same for reading glasses and sunglasses. Destroying those seems to be a passion of his.

I have been pretty quiet about Kaylee, Michael's twin.  It is time to just come out with it.  I have had a feel for a few months now that Kaylee is also autistic.  It is not suprising, since they are twins.  I honestly do not think I will ever get Mickey to see it.  He has a hard enough time accepting Michael's diagnosis.  There is just something about daddy's and their girls.  I picked up on the feeling when she began lining up all her playing cards, rote counting over and over again for long periods of time, same objects.  She has more speech than Michael.  Her meltdowns are easier to handle.  She has poor diet and poor sleep as well.  She has been toe walking and running for a couple of months now.  I point these things out to Mickey, therapists point it out in a gentle way to him, but Mickey won't see it.  I kept telling myself she was just copying the way she saw Michael play.  But, now that her therapies are in place, all three therapists and our social worker all quietly have come to me and asked me if I see what they have seen.  I know she is autistic as well, just higher functioning than Michael.  I know the school knows because they called and asked were we going to get Kaylee diagonosed over the summer.  I am just going to have to take this on by myself while Mickey figures out that we are all correct.  I am going to tell him that the school called and asked us to take her to the neurologist as well before school starts.  Then, Dr. Fenton can handle the rest.  Perhaps since Mickey will be taking her in since he has the vehicle, he will take it better from Dr. Fenton than the therapists and me just telling him.  I am going to just say it here so I get it off my chest.  I have autistic twins.  Cool.  Now it is out there and I feel relieved for just saying it out  loud. 

As I arrived at my clients home at our normal therapy time and no one around. The eldest son came walking up the driveway with backpack in hand and told me mom was on her way. It didn't take long before I could here a very familiar scream of my little bundle of surprises walking down the road with his 2 year old brother and mom looking like she was ready to passout. I helped her out the best I could to get them both settled down and ready for super and out therapy session. Mom now knows that he can climb the backyard 8 foot fence and makes it 2 miles down the road within 3-6 minutes. Mom is past her wits end and I can truthfully say, I don't know how she does it. God Bless her and all the rest of you! I got him settled in and once we got into the therapyroom he was ready to rock and roll. Very smart and so willing to learn, he was very loving today and could tell at times that he wanted to communicate and tries to tell us what he wants but just can't. I just sit and be patient until he is ready to try and verbally communicate his needs. Mom says she doesn't want him to learn signing and thats fine, I wish he was able to communicate his needs better. Being a mom and can pick up on most things he is trying to say, but not all.

I have two children with autism, 3 years old and 18 mos. old. Have already gone through the process of an IEP and am waiting to go through my other son's IFSP. I was aware that my older son had a problem with speech and certain odd behaviors (such as being mesmerized by water and lights) when he was 15 mos. old but was told by their pediatrician that it was normal and a delay that he would outgrow. Looking back on it now, I should have been persistant at getting a diagnosis, but I believed this doctor and his medical knowledge. When my son turned three, I had him evaluated by the school district because he still could not talk and he was diagnosed with autism. His younger brother was later diagnosed with autism by our local regional center. This is so new to me and I am not sure what it is that I am supposed to be doing. My children have seen three different doctors for speech and motor skills evaluations. Am I doing everything that I should be? I don't feel like I am even though I have them enrolled in Head Start and therapy. Is it normal to feel this way?

Summer is almost here and school will be out... last year I put Seth in Summer Day Camp but it looks like I won't be able to this year.  I would like some ideas on things to do.  We have a plan to go camping after my older son graduates from high school. Yesterday we pulled the camper around to wash it and get it ready and of course, Seth thought we were going out then...oh boy, get out the calendar... I told my husband I don't care if it's flooding on the 15th of June... we are going camping!  I promised and I don't know about everyone else but Seth never forgets. Don't tell him that you will do something then deviate from that.. LEAD BALLOON! Anyway, If anyone has some suggestions for me.... That would be Great!

I'm sure we've talked about loud vocal stimming before, but lately Wyatt has been a little out of control, literally shouting out random sounds to the point where our eardrums are ringing.  We try to tell him "quiet voice" "shhhh!" and "quiet!!!"  We try whispering and lowering our voices.  We try putting our finger over his lips for a second.  (He just imitates us and then resumes shouting).  We try distracting him.  That actually works sometimes.  An edible distraction with a "chill pill" in it works the best, but I hate to resort to that--but of course the later it gets the louder Wyatt gets and I really don't want to have ringing ears and pissed off neighbors.  Still, it is good for Wyatt to get to sleep at a reasonable hour so I don't have to send him to school not-quite-awake with his breakfast in a bag.

So I have been running an autism awareness group and since summer is here and cammping is in full swing i was wondering what the police force and rescue teams had going for those with disabilities.  This is what I found out...Nothing.  They don't have training or any experience for that matter.  It blew my mind.  We hear about more kids getting lost every year more and more with autism.  So I learned that i might be educating the police force, search and rescue teams, fire departments, and emts about autism in my area.  My concern for all parents and families is your police force aware of the needs our children have and if not can you help them become educated?

My niece and nephew live down the street.  The family is quite well off and the kids have all the latest anythings and everythings.  Trevor and Morgan always want to come play at our house on school holidays, they go to Cathelic school and have lots of those.  Well, they came over yesterday after the bbq at their house.  We walked home together, pushing strollers and chatting.  Five hours later they still did not want to go home.  Morgan is the girl, and she is 6.  I asked her why she wanted to stay longer?  She replied "Well, Aunt Abby, you just let us be kids."  I asked her what she meant.  She told me that I just let them play and be silly, wrestle around and be loud and goofy.  Trevor is 8.  He then added his two cents and said "Yea, we like it here cause you just let us play and you always have popsicles."  In the midst of all my trials and struggles and my not feeling well of late and the stress in our home, it was something else to hear the voice of little ones reminding me of what is truly important to kids.  They just want to play.  Fancy toys don't mean near as much as quality time, time to just be a kid.  These kids reminded of something I often forget.  Money does not buy happiness.  I appreciate the little lessons like these.  They seem to come right when I need them the most. 

Hi my name is Sonja van Heerden.

We have 3 beautiful children. 2 of them the eldest and the youngste have Autism Spectrum Disorder. We started a Special Needs Class in a mainstream Private school and it works wonderous. For more information go to MyBlog

You'll find it very uplifting.

 

We are sometime very low because we really do not have any support what so ever. Family and friends do not understand it.  But we try to cope.

Hi Iam new but have a question. We have two sons both with autism one is 18 the other  is 12. Now the older on I can has autism but my younger one has never been told he has autism but the school and others say he has it. Now my Wife every since our oldest was told he has autism, she thinks that everything and everybody has it, oh the cannot read they have it, oh they can not talk they have it and so on. well here is the problem our youngest has came out and told me twice he dodes not love my and that he hates me and my wife says it just the autism talking. I had two strokes in 2007 and he said I should have died , the other day I was helping with a game and he said I going to give you the finger and then said f---- you man, I tryed to talk to him about this and he said I do not need this from a old fart like you and left the room. I told my wife and again she said it was the autism and said I can not give up on him cause that would be wrong, she talked to him and he did say he was sorry but only after she talked to him nothing else happened to him for this. I fell trapped I do not think it is autism it just that he hates me. Our oldest has been told by the doctors he has it and you know he has it , but I do not see it in our youngest at all he plays and does everything other kids do

I just saw an interview of an actor I like, and he was quoting (or paraphrasing) Proust who said - Life is something that no one can do for you, and and no one can spare you from.

 

Wow.  That really touched a nerve, or a chord, or something deep in me.  It almost hurt when I heard that.

And expecially, as a parent of a kid who faces so many more challenges, hurts, hard times, confusion than the rest of us, the thing I always wish and pray for is that I could take on the hurt for my son, instead of him having to experience it.  As a parent, I don't ever wish that someone else could take my place or do the hard work of parenting for me, but it is painful to see my son in pain, or struggling, and I want to take that from him upon myself.  Yet God is here, accompanying us on the painful ride, and I guess I have to be OK with that.

I have no other choice.  I have made the decision to believe in Him, to trust in Him, and I won't go back.  But it's a hard road, isn't it? 

Middletown Centre for Autism - Funding Cut

I detect a level of fear and intimidation felt by some parents to speak out against the status quo. One of you even intimated the fear of litigation being lodged against you if you expressed your real opinions. This is appalling. I doubt very much that you are the only people in the North who feel this way.  read more »

I am 33 with 4 kids. My oldest will soon turn 13 and my youngest is 6. My autistic twins are going to turn 11 in July. I happen to have one of the least structured homes amoung autistic families that I know of. We try to have supper and bath time and bed time at around the same times, but nothing is absolute. We do different things on the weekends. This summer will be hiking and swimming and maybe a couple of mini vacas along with trips to see their father (well, maybe and I'll explain later). As i write tonight I wonder if there is an opening in the wall of trees I see before me. One of the twins has decided to destroy our home and he is doing a credible job of it. In the past month he has torn up books, clothes, window screens, wallpaper, chair rails, dining room chairs, mattresses, air filters, and a bathtub. I do not know that I can continue to support his destruction. I have a limited income and resources. We are trying, but I feel that I am failing. Tonight, I put "I" to bed in his room with a movie. His and his twin brother's beds were sheeted, but his twin had decided to sleep in another room. No blankets, no pillows for "I" as he had already tore them into shreds and every replacement has had the same treatment. I went to shut the room down for the night and he had torn his sheet into strips along with a towel. He had stripped both beds of sheets and mattress covers. He had taken off his clothes, but did not tear them up. I do not know if I should try to take him a blanket when he goes to sleep or not. Will he go to sleep?  read more »

I need to use this more often.  I fear I am venting too much on FB.  We have had a lot of good news lately, but still mixed with burnout.  I was sick for about 3 weeks, and not only do you deal with yourself not feeling well, but your highly sensitive kid picks up on it and gets out of sync, you're too tired & sick to do the things necessary to help him, and life gets a bit chaotic and overwhelming for a little while.  I think I'm beginning to catch up after folding about 10 loads of laundry this morning, and catching up on some much-needed sleep.  read more »

Ok, so remember when we first started with our therapy and we tried "do this", and I would clap my hands and he was to clap his? well, today when I was clapping my hands and showing my excitement during our session he started clapping his hands too! So, I started saying "do this" and clapped my hands and sure enough he got it!

Doing very good on his sharing and allowing me to touch his toys out of sequence. Today was the best eye contact I have ever gotton! I swear I wanted to cry, really.. It was so awesome! When doing table time sessions he now looks directly into my eyes when he has completed a task and with such a sparkle! I love it! He is coming along so wonderful compared to the first couple days. Which consisted of dragging him, being hit, pinched, head banging, screaming, um..... did I miss anything? oh, escaping... I think thats about.  We have become friends and he now trusts me as well as respects me and my requests. He doesn't even look for his M&M's for his rewards. We do high 5's and tickles. Still loves his tickles!

I am wondering about taking a two and a half year old to a pyschiatrist...have you done this with your child, and if you started this young, how did it go?  What are sessions with a child so young like?  I have taken preteens and teens, but never a toddler and I am wondering if you could share with me your experience if you have gone through taking a toddler autistic child to a pyschiatrist...I would love to learn from you. 

Well, I am presently awaiting a shipment of liquid melatonin.  I have asked a lot of question, read a lot of info, and now I going to see if melatonin will help Michael and Kaylee settle down and sleep.  I pray, seriously that this works and tonight they stay asleep.  I am not getting my hopes up, but am hopeful, if that makes sense.  If this doesn't work, I am going to have to plead with the pediatrician to help me figure something out.  It is getting so out of hand here, and I am just running on empty.  My chest is pounding, my head is throbbing, my hands are shaking, and I am scared to go down my stairs and do laundry for fear I won't make it down or up the steps without falling from weak legs.  I know I have to take care of me to take care of the kids, but today I feel like somebody needs to take care of me.  I literally got on my knees and prayed for God to help my twins sleep so I can get some rest and gain strength.  I am not having a pity me party, and I hope no one thinks I am.  I just want to have my energy back so we can play and bounce and jump around like we all love to do.  I know so many of us have the sleep deprivation issue in our lives, and I just needed to blog and get it off my chest.  I feel better for just having got it out.  I know I can do all I need to do.  Laundry can wait, dishes can wait, just concentrate on keeping the three of them safe and smiling. 

I am not sure if anyone saw the article about the genetic study recently conducted by UCLA and the progress they are apparently making towards understanding, from a DNA standpoint, what may cause children to have ASD.  I have mixed feelings about this because I read blogs of families with autistic children, and believe that in some instances, vaccines are the cause of ASD. Yet, each child is so different so DNA may play a part.  The jury is out for me on this one.  Nevertheless, we agreed to take part in a sibling study at UCLA since our son Caden is on the spectrum, and he has two twin siblings who are boys.  They will track the twins over the next three years, testing them every 6 months, starting at one year.  It is a bit of a hike to Los Angeles for us (about 4.5 hours, without traffic) and the stipend is minimal ($40), but I feel like if we can make a small dent in the mystery of autism, then it is worth it.  

Therapy going great! Everyday a new and more exciting day! Mom had a bad scare on Tue. He is a runner like I  mentioned early on. He was able to escape out of his livingroom window and run down the road to about 6 houses down. They had search parties out and called 911. He was found inside a neighbors home sitting in their fish tank. Well, the good news is they found him, the bad news is they are missing a fish! Oh, dear.. what can you say? I so want to take this mother and kidnap her for a weekend get a way. It's hard for me not to get close to the moms of the kids I work with.  Anyway, therapy is going wonderful and we are planning on ending the sessions earlier in the day due to him being so tired after 5. It's just a waist of everyones time running therapy until 6. He is burnt out, I'm burnt out and want to cry right along with him! ;) School is also ending for him on the fourth and they want to be able to plan some family time as well this summer.

 Sessions are becoming more challenging for him which, makes him more interested in being at the table. He is getting so much better at sharing. He loves doing the magnetic letters on the white board and placing out the alphabet. For the first couple sessions, he would not allow me to touch the letters at all. Now he has learned to take turns. He places a letter down, I say, "my turn" and I place one down. He still likes to touch it and make sure its to his liking, but leaves it on the board! Very exciting progress!

Location(s)

See map: Google Maps

 Education Through Engagement, LLC  in partnership with Vista Del Mar’s Inspire Program, will support autistic youth development by offering socialization and learning camps, which will offer developmental support in social learning for youth and teenagers on the beautiful campus of Vista Del Mar.

Campers will learn social interactions and problem solving skills, as they understand their community through new knowledge pathways.  By utilizing: collaborative group projects  relaxation/self-regulating techniques, multi-media, arts/crafts, sports, theater games  and life skills campers will discover themselves, their peers and community at large.

The unique attribute of our camp is that a trained professional  will have a developmental profile of your teenager and their individual differences before the camp begins.  We use this to truly support your teenager in learning in a developmental and experiential framework.

 

 http://educationconsultingservices.schools.officelive.com/camp.aspx

http://www.icdl.com/usprograms/schools/DIRSchools-CA.shtml

Today, one in every 150 individuals is diagnosed with Autism, making it more common than pediatric cancer, diabetes, and AIDS combined.  More specifically in the state of California 1 out of every 154 students are diagnosed with autism according to Autism Prevalence Public School State Ranking 2006-2007.

As these children grow toward adulthood these difficulties continue to persist for the children and their caretakers. The age appropriate life skills that typical children established naturally are quite a challenge for the child with autism. Life skills such as: navigating and engaging the community, problem solving, playing team sports, expressing needs and desires with peers and adults and self-care are areas of need for young adults with autism.  The communication of the world at large becomes difficult to navigate for autistic youth who struggle with communication and sensory deficits.   The primary caretakers of these young adults can assist in paving new pathways of experience yet; the caretaker alone cannot fulfill the necessary social needs of their child.  These young adults need a variety of age-appropriate, experiential, social, and learning developmental support. This learning developmental support should be delivered with a humanistic, systematic, individualized framework that supports and expands each youth as they explore and engage new learning environments.

I'M HAVING TROUBLE WITH MY SONS BEHAVIORS, HIS SENSORY DEFENSIVENESS IS CONTROLLING OUR LIVES. I CAN EVEN REMEMBER LIFE BEFORE AND HE'S FOURTEEN ALREADY. WE'VE TRIED 17 DIFFERENT DRUGS TO SLOW HIM DOWN,NONE HAVE WORKED AND AGAINST MY GUT FEELING THAT ITS NOT NECESSARY. HE IS IN A HIGH SCHOOL SETTING AND THEY CONTINUE TO TELL ME THEY DON'T KNOW WHAT TO DO WITH HIM.HOW DO I GET THEM TRAINED TO HELP MY CHILD LEARN SOMETHING?

Chris had a good visit. We went to a college graduation of a family we had known for years. We decided to take Chris. He was very well behaved and was very happy to see his friend and her family. We have watched this young lady grow into a fine young woman and she expressed the impact that Chris had on her life. Even at a very young age she would always ask questions about Chris and in time accept him as a friend. It was hard for Chris as his conversation is very limited but Erica never gave up. She was so happy to see him at her graduation party.

When Chris left to go back to his group home. I had started thinking of all the milestones that I had missed with my son. College, Marriage, Grandchildren. I am an only child as is my Mom and now my son is an only child.  I only spent a small time feeling sorry for myself and tried to understand all my blessings. I am a cancer survivor, My Husband is my very best friend. My Mom of 80 is in good health for her age ( she is living with us ) This is sometimes a blessing.  My son is happy Loving and has grown into a fine young man  I am truly blessed and will enjoy all the milestones with all our friends and family

hi i'm new here so let me introduce myself my name is laura and i have a 5 1/2 y.o. daughter emily who's been diagnosed with autism. emily is very verbal but most of her speech is echolalic. she especially likes to repeat favorite phrases from cartoons. amazingly enough, she usually uses them in the right context to get her point across. after alot of work the last 2 years in preschool she's finally started to want to be friends with peers rather than only adults. her teachers tell me that her classmates don't seem to think of her as different, just that's the way emily is. my best friend has a daughter a year older than mine and since she's moved close by we've been getting them together quite a bit. the girls get along as well as most kids their age, my daughter adores her friend. her friend has started asking questions and making comments to me about emily's differences and i'm kind of at a loss as to how to explain it to a 6 year old. we've talked about how emily is different in some ways but they have more in common than not and how in some ways emily is alot younger in her thinking than her friend but the little girl seems to just think emily is stupid. i'm not blaming this child at all it's obviously a failure on my part to explain, so any ideas? her mom is on board to talk with her but she's at a bigger loss than i.

For anybody in sunny Suffolk, UK, there is now a branch of the National Autistic Society (NAS) set up for the west of the region.

We had our official launch at the Suffolk Kite Festival where 30 of our Autistic Children and their helpers all had a go flying rainbow coloured kites in the main arena.  There was then a 'comet drop' where we dropped 1200 small paper comets from a large kite and the nearest prizes.

 Now we are up and running, we collected loads of membership forms on the day and can start sending details to all those on our mailing list.

 We now want to start doing loads of activities in the region, starting with a family picnic in the late summer - details to be decided.  A large number of our members have expressed a need to offer events and support to all with Autism, but especially teenagers and adults, for which there is very little help in our county.

For more information about the West Suffolk branch of the National Autistic Society (WSNAS) click here

Writers often experience a block.  As a mother, with everything so out of hand right now, from laundry to meltdowns I feel like I am having mother's block.  I feel out of ideas, out of tactics, out of energy to keep up with three little people with tons of energy, out of motivation.  I know this feeling will pass.  I know I just have to pick my butt up and go forward.  I know I need to concentrate on the good, what is better, what is improving, but frankly right now I can't see it.  I know all of us have felt like this, like how can I possibly get everything done that needs to be done.  I know all of us have felt overwhelmed and drained.  I am going to start small, start on the list of what needs to be done and what can be put off and begin checking things off.  Prioritize.  That's the key to not remaining overwhelmed.  I am cheered at the thought that summer is almost upon us here with only a few more days of school left.  The teens, Joseph and Liana will be home more and I will have more help.  The pool is possibly going to be here tomorrow if Mickey's mom finds one she wants them to have today.  This will bring hours of joy for the 5 kids and hopefully result in naps and better sleeping at night.  Last summer it did help a lot with sleep to have had them out in the water, active.  I am determined to keep my chin up today and not let the little ones feel like Mommy is not ok.  I know the strength I need to stay on top of things is within me.  I just have to hussle it up, rope it in and use it!

Anybody share their experience with members of family that travel for work, have no support system (i.e., family/friends) that live close, and have a child on the autism spectrum?

We have a had a pleasant break from major meltdowns for about three weeks.  The last two days have been so rough on Michael.  He is melting down over anything and everything and the sessions of throwing himself around the floor, banging his head on the floor and wall, crying uncontrollably are worse now than before.  Desi, his OT says she senses he is just so over tired.  From being sick, things being different with no therapy for two weeks, and all this up and down all night, she feels Michael is just in desperate need of sleep.  This morning he had not eaten anything, was tired and Sally came for speech, and Michael was fine till she was leaving.  He went crazy with the crying and was pulling on her when she would try to leave for her next appointment.  She felt horrible for being the cause of the drama and was shocked to see him so upset because he has never melted down while a therapist is actually in the house.  She kept trying different things to distract him.  I finally just told her to go on and go while I had to hold him down so he couldn't chase her out the door.  She called me after a few minutes to tell me how sorry she was.  Bless her heart, it is not her fault.  I know she knows that, but she just felt so horrible about it still.   read more »

 

 

School can sometimes be a great experience, but like all things this can also be a very scary experience for a child. My daughter Misha'al started school around a week ago and when she first went and met the teacher everything was great and all was good with the world. Well, everything was good until her teacher got sick and called out of school for a couple of days. This was devestating for Misha'al. It became a big problem as she told me that she didn't want to go to school anymore. You see it took me a couple of days to put things together. Come to find out  the substitute didn't know that she was new. So when the routine was going on in class Misha'al  felt completely out of place. She would come home and cry all the rest of the day and all night to the point where she would cry herself to sleep. When she would awaken she would  beg me not to send her to school anymore. I told her that she is a big girl and big girls go to school to learn.  Finally, her teacher felt better and found out that Misha'al was crying during school. So her nice teacher called home because I decided to keep her home for a bit. When her teacher called I explained what happened and she told my daughter that she missed her so much while she was sick and was hoping that she would come back. So Misha'al agreed and went back. She now once again she thinks that all is good with the world and hopes to stay with her teacher forever. I wonder what is going to happen in September when she gets a new teacher?

 

 

Izzy finally started school. He was so excited and so was I. We both went to meet his teacher Mrs. Wall, who happens to be a very sweet woman.  I took him to class for the first time because the teacher thought it would be a good idea. You know just incase he got nervous. I think I was more nervous than he was. It took him all of 2 seconds to get used to the situation and then he looked at me and said bye bye mommy. I was so scared when I left him there but his teacher said he had a great day. I now see the pro's and con's of sending a child to school. One of the great pro's is that a child gets to interact with other children their age. Two of the great con's are that a child starts to pick up other childrens bad habits and also they start bringing home all those great colds us parents love so much. So, we will see how it goes and will take one step at a time.

Ok, So I know Wyatt's mom told me once before...but I can not find the blog and I want to do the side bar thingamijig where you say why you joined, a brief story...blah blah...I don't get how to do it because I am computer illiterate in many ways still...could someone give me a brief instruction on the how tos of this, pretty please?

I'm a DAN! doctor and am a real believer in the healing power of hperbaric oxygen therapy for treating autistic children and was wondering what people's experiences are of HBOT:-

• Have you tried it with your child?
• Did you  notice any improvements in your child's health or behaviour? If so, what?
• Would you recommend HBOT to other families?
• Did your child enjoy it?
• How many sessions did your child receive and if they improved how many sessions did they have before you noticed an improvement?
• Did you combine HBOT with any other types of treatment?

I would love to hear of people's experiences, positive or negative, as it is a field that I am extremely interested in.

 

Thanks,

 Chun

Has anyone ever had to deal with a vice principal and principal physically, mentally, verbally and emotionally abusing their child?

Can anyone tell me if it is normal for a child on the autism spectrum to have their head become really hot from having to think real hard during class work?

It has been suggested that Michael have ABA Therapy over the summer, before school starts.  I am going to have to think about this.  It means two hours daily, 5 days a week and it is him with the therapists working, not much involvement from me.  They will basically be in a different room with the door closed...not too practicaly in my home, but doable.  Michael hates closed doors.    This would be a new approach.  When our therapist come now, they model the activities with Michael, coaching me how to do them myself with him.  Mickey and I will discuss this and make a decision this week.  I am going to go over the pros and cons of this new proposed therapy plan, and see what I come up with.

This was way before he was Fast & Furious. We're very proud of Paul =)

Tomorrow is the big day!  Mickey and I go to our first IEP meetings for Kaylee and Michael.  I am ready!  I am looking forward to seeing what they have planned for my kiddos.  Anyone have advice for me about tomorrow go on and send it my way.  Any warnings for me?  Any words of wisdom or things to keep in mind?  Well, I will blog tomorrow and let you all know how goes it.

I thought this might be helpful for some parents and educators. Please click on the link for more information.

 http://www.ehow.com/how_5000912_discipline-child-autism.html

Tuesday, 12 May 2009

One parent in particular asked me "what good is an autism Act when we are sitting here with a child who doesn't know its own parents? He needs help, we can't afford it and in Northern Ireland, even if we could afford it, it's not available."

The autism charity AutismNI (Autism Ulster/PAPA/ACT) has lobbied for some time for legislation (they want it to be called the 'Autism Act') to underpin the "rights" of individuals with an ASD in Northern Ireland. When convenient, AutismNI/Autism Ulster rolls out their support of this non-existent Act to show how committed they are to the label of autism. The idea has dragged on for years, and is really just a stick that AutismNI/Autism Ulster grabs to beat it's own drum.

My daughter will be seven this summer and I've thought a lot about the diet but never implemented it (my pediatrician and therapists often say that the effects of the diet are placebo effects and this has disuaded me).  As a mother, I feel guilty for not trying the diet, more out of laziness than anything.  But since my daughter was diagnosed at three (my son was six weeks old), it has been almost four years and we've worked on ABA, Emory Autism Center, Babies Can't Wait, PECS, IEPS, School issues, Speech TX, OT, and the whole gamet of things we've all endured. Not to make excuses but I quit my job this year and feel like I am just now able to breathe and focus (I was working to pay for ABA therapy but decided that the price of sacrificing a mother/advocate for a college student who know ABA was too much). 

My question is this, has the diet helped to reduce stimming for anyone?  My daughter is a vestibular stimmer and it has increased recently.  She has the poorest eating habits, no fruit, hardly any vegetables and will only drink whole milk.  SHe is also constipated a lot it seems.  I think I am ready to start this but I am still skeptical I am reaching out for something that's really just hype.   HELP!

my son has been on a few biomedical things this past month. I want to share them with you in a bit, but first I want to tell you a new thing that he never did before. Just this past month my son (who is 5) never before, been understanding the comprehension of language. Now he seems to be understanding language. For instance, I ask him to do something he does it! He did it twice. The first situation he patty caked, I told him no more and go back in the kiddie pool, (i have to regulate his patty cakes, he will do them all day and night). and he turned and went back in! The other thing I told him it is potty time. He got up and went to the bathroom, pulled his own pants down without prompt. My son has always repeated words, but never understood them quite well. This is a new experience of progress

These are the treatments he has been using this past month:

Methyl-B12(again i tried it last year no real improvement) from his DAN Dr (defeat autism Now)

Oral Chelation and the clay bath at www.evenbetternow.com (by the way i got this site from another parent on here and i would like to thank him or her for sharing it with us)

Probiotic ThreeLac (he has been on this for year, helps him stay regular) www.threemax.biz or email him atmwinicki@yahoo.com (this is the cheapest sight that i use to order probiotic. Its a powder and mixed in drink. Its lemon flavor.

 

 

Why do I want this? Because Sam is developing what I call Night anxiety (there probably is a technical term but I prefer my own!)

As soon as it gets dark Sam changes into a frightened little child who is scared of his own shadow. Anything makes him jump, he will not leave my side whatsoever and all lights must be on in the room we are in and surrounding rooms. Any noise will make him jump, even if its me asking him something, he will start to cry saying "I've scared him". His eyes flicker around the room as if hes looking for something and he sits huddled up with a frightened look on his face. He also suffers more and more with bad dreams and thinks that monsters are going to come and get him so i have to make sure there are no gaps in the curtains.

His whole persona changes, his face has a "scared look" on it, he talks in a baby voice and he shows signs of anxiety....fiddling with his hands and his general body language

Its getting to the point now where its becoming a problem, for him and for me so I need to try and stop it in its tracks before it takes over.
He only does it at home, which leads me to believe I know what the cause is. He is fine when he stays at his Dads (he says because its a flat nothing will get him because the monsters are not sure which flat to pick)  read more »

A  study by Washington University in St. Louis professor Paul Shattuck, Ph.D. reveals that the average age of a child diagnosed with autism is six years old — that’s three to four years after a diagnosis is possible. Dr. Shattuck asks parents to trust their instincts, and follow up with any developmental concerns immediately. Closing the diagnosis gap will ensure that a child obtains the proper therapy and treatment as early as possible.  To review the entire summary, please visit the Washington University website at http://news-info.wustl.edu/tips/page/normal/14077.html 

Well, what a week we are having!  My spirits are lifted with Joseph being up and around.  And Michael is so happy that Joseph sat and did puzzles with him today for a little while.  He keeps taking Joseph's hand and leading him around the house, he is just happy to have him around. 

Michael is really missing his therapists since no one has been here for two weeks now with the flue going round our house.  A car pulled into our driveway this morning and he actually said with a bit of question in his tone "Lis?"  Miss Lisa is his DT and she sings all the time to him and he loves her.  I think he was hoping it was her.  I look forward to getting back into the swing of our life so next week he can see his therapists.  Thursday Kaylee gets her testing for First Steps so she and Michael can both have therapy all summer till school starts.  I am feeling much better about them going off to school and actually looking forward to having time with just my Alex.  So, in general my spirits are lifted a great deal, and I am so grateful to all my friends for their care.

  

Ive been trying to persuade Sam to go to the shop, which is only 2 minutes away, for ages now. He wont go. He said he is too scared to go on his own....which is fair enough.

Friday afternoon he went with his friends to the shop to get something, a cap gun. Then Saturday morning he got up and shouted "is the shop open?" I said yes, and the next thing i know he is dressed and running around saying hes going down the shop to get some caps for this toy gun. After a manic few minutes of me trying to talk to him, have you got your phone, have you got money, what are you going to do after etc, He went of to the shop...on his own...end off!

So because *he* wanted something desperately that was within reach he didn't give anything else a thought...."I need caps from the shop" was his motivation and nothing could distract him from that! If I had said...get me some milk while you are there...he would have said "no, I'm not going then!"
It always has been on his terms....everything from playing to learning. The school call this manipulation!! yes...they have no idea, don't even get me started!!  read more »

We started an in-home behavior program about one month ago for Caden.  The therapist who was working with him today is fairly new to the program (about 1 month out of college) and wasn't being supervised.  We brought them in, in part, to work with him on doing projects as a team, and to put him into situations that are not preferred, in order to teach him how to cope.  His current coping skills consistent of saying, fairly loudly, "No thank you" if you do something he doesn't like.  He is also fairly good at walking away if other kids don't listen to him. Today, as the therapist and I were doing a puzzle with Caden, he wanted to trade a puzzle piece with me.  I told him "no" because I wanted to put the piece I had chosen in, thinking that is what other three year olds will often do.  He got super upset and tried to remove the puzzle piece I had just placed.  His therapist responded by holding down the puzzle piece.  That action threw Caden into the most horrific tantrum.  I have never seen my son get so angry.  He started screaming at the top of his lungs "No thank you" and pounding his feet on the ground.  The tantrum went on for a good 5 minutes, with him fluctuating in and out of sobbing ("mommy, mommy, please hold me") and screaming.  The therapist kept saying, over and over, "you can have the piece when you calm down" and "nice calming" when there was a lull, but those words only seems to escalate his behavior.  My heart is broken because I didn't know my son could get so upset.  As of late, he has made huge progress with his willingness to share.  He doesn't throw tantrums at school, just minor protesting if someone grabs something from him, and his tantrums have always been fairly mild at home. If he does start to tantrum, we immediately put him in the calming chair or redirect him.  read more »

Well, we had a new therapist start with the little guy last Friday. I just met her and really couldn't say either way if I thought she would be good or not. Mom came to me right away today and stressed her concerns to me and just not having a warm fuzzy feeling inside. She told me that the little guy just screamed and cried while she was there. I had to carry and pretty much drag him in the room today. He was totally off on everything I tried. HOH on programs that he has mastered. Noises that didn't bother him, today did. I could tell by the cries that they were different. It wasn't a mad cry or even tierd or sick. Something was really bothering him. He came to me while I was standing in his room and wrapped his little arms around my legs to give me a hug.  I told Mom to stick to her first instincts she felt about the new therapist. Normally he doesn't have problems meeting new people and adapts well to change. Today however, something was wrong and it bothers me like he is my own.

HAPPY MOTHERS DAY

TO ALL YOU FANTASTIC MOTHERS OUT THERE!!!!

Hope you all enjoy your day!

Shawn

I'm just glad to have this site so I can read or write and know there are others who understand what I go through on a daily basis.  My son, Seth was officially diagnosed with High Functioning Autism this past March. He is six years old and in kindergarden.  He has been through alot in his little life starting with the day he was born.  Had to have emergency c-section because he was so big (10lbs 11oz) The doctor cut his face from cheek to top of his head, had a dime size hole in his heart and sleep apnea. The latter caused him to get sick alot. At 4 years old, He went to Duke Medical and had the hole patched, they also discoved a crimped pulimonary vein but it's not presenting a problem so they just moniter that (every year he goes to a cardiologist) Six monthes after his heart was fixed he had his tonsils & adnoids removed. Then he went to pre-school where they thought he was developmentally delayed... This year I talked to his regular doctor and asked her to refer us to a doctor to be evaluated.  After all the doctors this babe has had to put up with... for a couple of weeks after the evaluation he had fears that people were watching him.  We have to go back in July twice.  We live in a rural area and it's 125 miles one way to go to these doctors but we make a day out of it looking for waterfalls and waterwheels.  I try to keep my sense of humor and he has a beautiful one...it has stopped several meltdowns from occurring  (we have rule #11 IF I GET UPSET I GET TICKLED)  I am really thankful to have this site because I don't have alot of free time as you all understand I'm sure.  My husband tells me everyday when he leaves for work "KEEP SMILING" and that is what I will pass on today.... KEEP SMILING! 

Greetings -

Recently I began reading Sarah Napthali’s book, Buddhism for Mothers of Young Children.  Have you ever read it? 

 read more »

Hi everyone.  I just joined.  I'm hopeing to find some kinship and understanding here.  I would like to give back as well.  My son is 16.  Do any of you struggle with episodes of rage?  How do you handle it with a child who is so big and strong.  It was one thing when he just threw a trantrum once in a while when he was younger.  Now, it's a huge problem.  It only happens once every two months or so, but when it does--look out!!!!  Hope to hear from some of you soon.   Leona

Hi everyone. I just joined.  I look forward to meeting some of you.  My son is 16 and a handful as I'm sure some of you know.  I hope I can find some people who understand.  Do any of you have teenagers that rage and what have you done about it?  Leona 

My brother bless his heart called the other day and told me he didnt want my husband mowing our big yard anymore so every two weeks his gardners will be mowing our yard. They came by awhile ago. Three men with big mowers, had it knocked out in about thirty minutes. My husband was grinnin' ear to ear as he sat in our cool house sippin his coffee. Gotta love big brothers =)

Sorry I've been gone a few days here, finals are next week so I have been crazy busy!!

I had 3 sessions with my new bestest buddy this week and everyday gets more exciting than the next.

I had to laugh because I use a lot of verbal praise and tickles when I work with kids and mom  told me that when he is in the therapy room on our off days he says "good job!" He echo's so he is echoing me! Other than that he is non verbal besides echoing cartoons. Hey, this is a mystery question for anyone out there that might know. When he echos cartoons his pitch is normal. When he trys to say words on his own, he has a real low gruff voice?  I've never encountered that before? Has anyone else? They haven't started with speach therapy yet, but is this something that is normal? I was sitting in with the family, county and Dr. meeting when we first met the family and the Psych was rather confused himself.

Monday we did have some tantrums but nothing major. He still does struggle with sharing and writing perfect on his board. Today I tried again and he erased it 2x's and just walked away. That was good, it was head banging, my glasses got torn off, (contacts next week) I also work in a group home with the developmentaly disabled and there my glasses end up on the floor as well, It's time to make a change! Maybe they just don't like my style of frames?? There not that bad! Anyway, like I said, today was a awesome day! Mixed up the programs and gave him some bigger challenges to tackle, we work together slowly on new items seeing his patience isn't that good.

He still loves his bell the best, even though he has mastered that I bring it out to capture his attention and get some smiles!

 My son has autism and I took him to a DAN doctor in Sarver, PA-Natural Pathwys to Health 724-524-1527.  Dr. Mary was great, warm understanding.  She has been doing this for many years.  My son's name is Eric and I didn't think I could find help.  I had tried other doctors before.  Nothing helped him.  I was going crazy.  But finding Dr.  Mary was the best thing.  Eric is doing much better.  Eats better, behaves so much better.  I really like her.

All I know is that being the one to stay home while the other goes to be with Joseph is really tough.  I need to see him with my own two eyes, but it's not a possibility right now.  Mickey's mom can't come take care of the little folks because Liana is still sick.  Nana has Morgan, my niece today and can not get her sick.  SO, I am just home, wishing I could hold my Joseph's hand and assure him of my love.  I thank everyone for their prayers.  We still do not know what really happened, but now the police are getting involved since Joseph has not recollection of yesterday at all.  His three friends will all be getting talked to by the police and maybe we will get some answers.  It is quite apparent he did not just fall and hit his head.  He has bruises, cuts and scrapes all over his body.  His head is fractured from the back of his head to his ears.  They did stop the blood in his brain so that is good news.  He did answer the typical questions about the president and what year it is, but has no memory of his day yesterday except for walking in the door to lay in his bed.  His friends are hiding something, but Ian's dad is on the case.  Ian is Joseph's best friend.  He was there and knows something.  THese kids are thick as thieves when it comes to one another...Thank God Ian finally had the sense yesterday to inform my daughter on Facebook that he was worried about Joseph since he hit his head...we did not know anything at all and just thought Joseph was getting the flu like Liana.  SO, Ian's dad is going to talk further with all three boys today and see what they fess up.  Better to tell him before the cops show up.  His friends are all very scared for him and I think for themselves.  I have a feeling it was something that could have so been avoided.  It is horrible to not know what happened and to know your child is suffering and not know the why.  I am holding it together pretty well, my sis calling me often to ke  read more »

Alex, Tank we call him is one today.  He is now sick with something...not sure if it is the flu...think it's teething, ears and gums bugging him...at any rate...I watch my Alex like a hawk, now more than ever.  I know the risk in boys is higher for being autistic...and I must admit to the fear.  I will deal with it if it comes to us again, but I do pray it passes him over.  Today is a day to celebrate and be grateful for all his health and sweetness!  My last baby to turn one.  It's a big deal for me, that last baby turning one.  I am very blessed with 5 just downright sweet kids.  Happy Birthday Alex!

I have missed my friends here, but I just am going through a whole spectrum, no pun intended really, of feelings right now.  It was hard to sit through two hours of people letting us know all the delays they see in our Kaylee and Michael.  I am grateful for their insight.  I know they need to go to school this fall.  I just have never had to put my kids in someone else's care at this young of an age before on a daily basis, well, except Fridays, school is 4 days a week.  I know I will have time with my Tank, our Alex who is one year old today, by the way, and he will thrive on it.  So, I will send them off, but it is really going to be rough on me, letting them go and trusting others to meet their needs for three plus hours a day.  Ugh...I will survive it, and I know they will probably love it.  I know they are going to gain a lot of skills.  I just wish we did not have to go through it, that's all...ok, so I feel better for just getting that out.

I want to start with   I love my son!  I can't imagine life without him.  But I'm also not sure how to live with him.  He was diagnosed with Asperger's almost 6 years ago, then the doctor basically said 'here's the pills, have him talk to the counselor.'  We didn't get any more help then that.  We recently went looking on our own, and people keep telling me we're on the right track. But then we have a day like today, when he tells me what a worthless parent I am, that I don't do enough to help him, and I don't know what else to do.  I'm at a loss?  Am I the only one that feels like she can't get it right? 

This Spring has been harried, maddening, and full of hope.  Just like your typical day as a parent of a kid with ASD.

Eldest daughter continues to have chronic terrible headaches, is dependent and fragile.  Second daughter is in therapy for eating disorder and struggles with self-esteem.  Son  with autism is doing OK, but wants to remain forever young and gets threatening when his growth is referred to.  Youngest daughter may be in early stages of OCD and anxiety, and has recently revealed to me that she has been a chronic "sticky fingers" kleptomaniac thru much of her youth (very youthful, since she is only 11 - she must have been tucking loot in her diapers).  Dad has decided that we should move to save $$, then changed his mind.  Grandmother needs a pacemaker operation (this Friday), and is trying to sell her house so as to move into luxurious senior citizen housing.  Mommy (that's me) had an awful abcess, and had to have oral surgery - looked like a 'planet of the apes' extra for a week.

The last straw was when youngest daughter was asked to stay home from school, since there are 3 cases of pertussis in her grade, and she has not been immunized.  The kids with pertussis had been immunized! 

I gave you all the awful stuff first, and saved the hopeful for last.  My son, 14, participated in Special Olympics for Track and Field this past 2 months.  There were so many compassionate hghschoolers, male and female, who volunteered to be "coaches" and run around the track in the cold with my boy every week...and at the final competetion, he won 3 gold medals.  Our kids with autism have so few opportunities for sports and clubs, and here he had 3 teenagers actually delighted to see him each week!!  He loved it.  I tell you, I wanted to hug and kiss each teen volunteer there!  So that was April and May...crazy and terrible and wonderful.

AutismFreeZone is a unique web-site focused on helping families impacted with autism deal with the financial hardships that overwhelm us. The site allows its members to give each other items that are new or slightly used that have lost their value or did not work for a specific child or family and to ask for "wishes", items that we need. In addition, companies donate or give discounts on items that are specific to our community. This group is here so our members can discuss ideas on how to help us build and expand AutismFreeZone.com and a place where they can discuss any topics they might want to get advice on. If you are not already a member please join us at AutismFreeZone.com. It's free!

 

Thanks, Randy

Founder and Autism Dad

www.AutismFreeZone.com 

Has anyone had to deal with a school board regarding a child on the autism spectrum coming home with bruises on his collar bone from the vice principal?

Hello!  I came across this site by clicking onto a link from "Twitter".  I am looking forward to viewing blogs and commenting on them.  Anything I can learn on the subject of autism that can help me to help my grandson will be wonderful.  He will be turning 11 in a few months.  He was diagnosed at two yrs., so I have been there, done that, but it seems a whole new ballgame now, as  he is becoming...what do they call these yrs...."tweens"?!

I don't have a lot of time to be online this morning, as I must run to my daughter's house and get four grands up and deliver them to three different schools.  Their mom (my daughter) has to leave for work in a few...So, I wanted to reach out and connect here before my day takes off in full swing.

My hope for you today is to have a great one.  I'll leave a hug here for you.

There was a mini thunderstorm earlier this afternoon and Michael is obsessed with watching the rain. Not that I can blame him, I love laying by an open window while it pours (as long as it does not come in and soak everything). After a flash of lightening Michael insisted that somebody took his picture. At first I tried to explain that it was just lightening from the storm but he insisted it was a picture from somebody in the sky. So I asked if God took his picture, and Michael immediately rolled with that. God took his picture. I have not really tried to teach anything religious to Michael. Ma believes that all children are born with the knowledge of God and as they grow and lose their innocence they forget about him., especially without the reminders around them. So maybe that is true about Michael. And since his love and mind are more pure and innocent than most at his age, I hope he can hold on to that knowledge...

I just recently borrowed (from work) and read a book called " It Takes Two to Talk" by Jan Pepper.  It was easy to read and easy to implement.  My son is not on the autism spectum but does have articulation related speech delays and we can use all the resources we can get.   I would definately recommend this book to anyone wanting some practical ways to interact and bring out communication.  Now, since I work in the autism field, I also borrowed another book from the same publisher called "More Than Words:" by Fern Sussman, which is specifically designed for bringing out communication skills in children with autism.  I did not read this one yet, but they have similar pictures and a similar format, so I am guessing it is just as good.  

I was so impressed with them that I added them to my affiliates page my "Communication Techniques" Page
http://autismclassroom.com/home/index.php?option=com_content&task=view&id=37&Itemid=45

Today I totally overreacted when my husband calmly reminded me – yet again - that our computer’s memory system is almost at capacity.  I didn’t even know my reaction was going to be so volcanic and unexpected until it was all over.  And that’s when it became abundantly clear to both of us, eyes wide in disbelief, that I am exhausted and overwhelmed.   I find myself feeling peeved about letting this state of imbalance happen to me and to those I love…again.   I feel angry at myself for letting this pattern repeat itself.  But it has.   Later, in calmer retrospect, I review what’s been happening in my life.  Yes, I overreacted in response to – in addition to my daily tasks as a mother to two preschoolers and holding a small part-time job from home -  the additional jobs of being my son’s occupational therapist, driver, general disaster prevention officer, social skills coach, personal trainer, psychologist and advocate.    We are about ready to end our first ever successful year in preschool where we have top-notch support from a trained team of professionals and support staff.  We now face the transition to kindergarten, where we will emb  read more »

I have a 10 year old son who has PDD-NOS(pervasive development disorder-not otherwise specified) which means he has some characteristics of Autism, but not enough to be diagnosed as so. He is basically very high functioning.

It took 2 years, but our son was finally evaluated for Occupational Therapy/OT (which he had in 1st grade).  The OT realized that Evann had difficulty staying focused and felt he had a vision problem. She referred us to a Optometrist who does extensive exams. He felt that he had something called "convergence insufficiency" double/blurred vision. Basically his eye muscles are not working correctly causing his vision to mess up. He said that he had it since birth. He then referred us to Dr. David Cook in Marietta, GA who specializes in special needs children with vision difficulties and has written books. He confirmed that our son does have "convergence insufficiency".  After testing he determined that when our son is seeing things 10" or closer they appear in "double vision" and/or blurred. When he sees things further away they are "blurred".  This would explain why he was having difficulties reading, math and even picking up a cup from the table.  I cannot tell you how many times he had spilled things.  Dr. Cook said that our son would need to have vision therapy for 6 months - 1 year. We chose to have our son go to Dr. Cook once every week for therapy and I do it the other 4 days at home. I just wish the school would have performed the OT evaluation 2 years ago when I requested it, so my son could have the help sooner. If you go to www.cooksvision.com you will see a questionnaire to help determine whether your child truly has a vision problem.

Just posting to say hello and I hope to add to the already incredible stories and research that have made Autism Blogger so successful.

Came to me 3 times today without any prompting! Love it! He was so full of energy today! I have never seen him like this. I had a hard time trying to get him to focus on a lot of things. Except the bell, he still loves the bell! I couldn't even get him to do the burrito. But, like with any behavior with autism something might work one day and the next day forget it. I still feel like he likes to be challenged. Too much of the same thing he gets bored and will start being a stinker and thats expected. Who doesn't get bored doing the same thing over and over again? He is making great progress though. Again today he came and wanted to sit on my lap and look through a book together and started saying the animals in the pictures. He usually only echos for verbalization so its good to see he is trying. It was a beautiful day so we spent breaks outside on the trampoline. Good day  :)

This is just a note to state I have lost my little Boy :.( He came home from his group home with a beard. He has a beautiful face and I just miss it. I know it is easy as he has trouble with shaving but one more little reminder that my son is growing up. I have agreed at his request and am dealing with it. He came home for Derby and has done well so far. Enjoying his visit so much even though I am cooking and washing more clothes but that is OK as well. Group home going well and Chris seems happy

I was a bit nervous for my sister to come, only because she has been to see us since the autism began in Michael.  I know she loves us all, but I was worried at how she would be feeling, more, worried she would be sad upon coming face to face with it.  And she did get a little teary when he had a minor meltdown, and we had to put him in the swing and sing to calm him...she got really quiet and went outside for a bit.  She came back in, and her eyes were puffy.  When I asked her what was wrong and hugged her, she hugged me fiercely and said, "Michael sure got the right mommy in you.  You are so patient and compassionate and you have such confidence in what to do for him."  She said it had not really hit her that anything was different, or wrong.  She has just seen photos since her visit before all this set in,  and then here it was in living color; he has special needs.  And it just hit her kinda hard.   He was so sweet with her, crawled into her lap with a book for her to read.  I love how children love, they just do it.  They don't think about it, wonder if they should, they just do it. 

http://en.wikipedia.org/wiki/Childhood_disintegrative_disorder

I don't know a lot yet, but I am looking into this because Michael was a month over two when the speech was totally lost...I know he had some other signs of autism that began appearing around 15 months, but he had a great deal of speech until suddenly at 2 years old...one day he talked up a storm and the next day the silence began.  Fishing, fishing, I know I am fishing here. 

I am hoping we will find out more specifics on where Michael is on the spectrum once June comes and we begin the testing and research at the Knights of Columbus Center here in  St. Louis.  Do all moms whose kids get newly diagnosed feel such an urgent need to just have a real specific name for what their child is going through?  I know it is  probably not going to make any difference in how its treated to have a true idea of where he is on the spectrum.  Yet, I feel a great need to have it named and spelled out for me so I can get my peace and go on with the work and learning.  Then Mickey, daddy will accept it and we can get the show on the road. 

What a great day we had. He sees me and the first thing he did is grab his blanket and wrap himself up like a
Burrito! So, we played the "I twirl the burrito in circles, until I get dizzy", game. Everyday he seems like he wants more challenges at "table time therapy." Today I introduced a bell. "Do this", I ding the bell, Then he does, he loved the sound of it. It somewhat surprised me that he did because, he does have sensory issues with a lot of other sounds. AND!! He sat on my lap and we read 1 book at a time!!! It was nice to have that special bonding time with him. I think he realizes more now that I do expect certain things out of him but, we can also have fun and cuddle too. It was so nice. Seeing the progress these kids make on a daily basis is just so amazing!

So, how come not a single one of the doctors that has seen my son has brought up CDD?  I am reading latest autism news about the gene studies and here is this disorder in bold print with a link to read about it, signs, symptoms, treatments...etc... Anyone here know about this disorder?  Should I be asking these doctors he has about this or is it all in my imagination?  Seems like a lot of what my son has gone through.

I would love to hear the stories of each of my new friends and how autism came into their lives.  I wish there was a place here on AB to write your story, so others could read it, if they wanted to.  I know there would have to be a word limit because some of like to write a lot...so, just wondering if this could happen here. 

Also, guys with all this great writing and wonderful experience and sharing....surely others could benefit from what we are talking about here.  I really think there is a book here, somewhere, or something with collaboration from all of you...

Hi all,

Great news!  We bought our 15 year old, nonverbal, autistic son the iPod touch, in order for him to have a more mobile talker than the one the school district provided.  A simple text to speech app existed called 'Speak it'.  As our son can read, write and type, although not ideal, we thought that this could be useful for him.  After a bit more research, we found that Assistiveware was almost ready to release a new app called Proloquo2Go.  We bought it the day it came on the market.  It is excellent!!  Those guys are genius!  It is simple, has great pictures, and is easy to program.  Our son, David, has always loved his earlier iPods, so this was an easy transition.  It is so nice and slim, it slips right into his pocket.  The added bonus, is that now he gets to take his movies and music to school with him too.  He has been proudly showing off!  Now he is carrying something cool and desirable, instead of something kind of weird.

 We were a bit worried about his ability to manipulate it, as his fine motor skills are not really good, but happily, no problem!  If anyone out there uses an assisted talking device, I urge you to check this out.  They are selling packages right now for $500 that includes an additional speaker.  So far, we have not found the speakers to be necessary.  The 8g iPod was $229, and the introductory offer on the Proloquo2go app is $149.  

 I highly recommend this product!

 Lauri  

My son is getting an assistive technology (AT) device.  I'm trying to figure out how to use the thing, signing up for training and all that, and I noticed that various groups around the country offer summer camps for AT device users. Some of the camps are for kids and some are for adults.  Here's a link to a list of camps that I found:

 http://www.prentrom.com/camps/

 It may be too late to sign up for this year, but in years to come it is something to think about.  My husband and I are hoping that my sons potty training and a couple of other behaviors will be under control enough to be able to send our boy to camp, preferably in an area of the country that we would also like to see--so we can have a concurrent vacation with a built in "camp" babysitter!

Lately, there has been a lot of news about the various treatments out there for autism.  Does anyone here know if these  treatments could be used on adult cases or is it only beneficial in children?  Normally, I only ever hear from people who have found these treatments such as a change in diet to be effective and claim they have cured their child's autism  Since the rate of autism in the population continues to rise I am assuming that these interventions do not work on everyone.  This really wouldn't surprise since the spectrum is so wide and the population is so varied.  I'm hoping with this new news of a common genetic variant in a subpopulation patients we might start being able to figure out how many versions of autism we really have hidden within the spectrum.

I think that the one thing that seems to be clear is that there probably is not only one cause and in the same token not just one cure.