Autism Experience

New Blogger

lovemykid's picture

Hi everone,

I have never done a blog before so this is  all new to me.  I have a son Michael who is 12 that has Autism. He will turn 13 in Oct.

Also I am I single mom. Michaels dad is not involved in his life. I have been staying with my parent who have been helping me with my son.

I am planning on moving out soon but Im worried because  I will be loseing there support as they will have to move out of the area because it cost to

 much for rent. So I will be on my own. Anyway that is all there is to know about me. I will blog again later! Bye!

Some things amaze me...

shootingstars's picture

Michael never ceases to surprise us with things he can do or knows. Since he cannot really communicate it stands to reason our shock is even bigger when he shows us something suddenly.

My best friend is pregnant. Very pregnant. She is also Michael's god mother. We just call her Aunt Heather, and she deserves that title. Somehow Michael knows where the baby is going to come out. He does not ask how it got in her tummy, just accepts it is in her belly. But he knows where it is going to come out! And he likes to show us much to all our our embarrassments. He was a C-section so it is definately not memories of his own birth LOL

I have learned in the last several months it is time to stop underestimating my son.

My Theory of Developmental Disabilities

CandaceDorning's picture

          I had a really good theory. The theory of why theres so maney people with developmental disabities, is to teach others about differences and unit the world in peace and haremony. To bring people closer togather, it doesn't matter either way of race,sexual orgins and disabilties but to live in peace. The people including myself are probably here with disabilties to love and give chances and hope, that we can over come obsiticles and respect others as we want for ourselvs. I mean theres always reasons why we have something and that to me is the positive way of looking at it. For me to have a autism spectrem, is for me to help other people who has other types disabilties. I think I am here to help but yet show others that we can be there for each other. I don't want a cure for autism this is just going to make other people stronger and closer if we understand the differences, to not be afraid of what is consider normal or not normal. Theres no such thing as normal anyhow. This is who I am and if there was a cure I wouldn't take that chance. Cause I am beginning to love myself for who I am and yet what I am beginning to understand myself. Thats my theory.   

Sounds of breaking glass and Autism

Jenib487's picture

 For all of you who have been  having breaking glass issues. When my son was young he broke every window in our home at one time or another. I had the window repair people on speed dial. He also liked  throwing glass jars in the super market. He was so very fast that he could reach a whole row before we could stop him. After thinking and watching he really liked the sound of the breaking glass  Some times my son would respond to sound faster than anything else. This did pass in time and in time we were able to do shoping with Chris without having a worker follow us around with a mop. It is important to not only look at the behavior but maybe the reason for the behavior

I wish I could "WORK" from home!

JamieSue's picture

I have a job that allows me to work from home.  The only problem is that I struggle to get any real WORK done.  It takes me three times as long to finsih my work than anyone else in my company.  Why?  Because something bad happens everytime I pick up the phone.  My first call of the day, which lasted all of two minutes, resulted in my son sneaking into my room and dumping out an entire can of baby powder.  My second call took twenty minutes to make because my son wouldn't stop yelling catch phrases from various cartoons and computer games.  The rest will go the same way since I just told him that he can't have any more junk food and the pantry is locked.

Everyone thinks that since I work from home I have it easy but it is far from it.  It takes me 12 hours to do what should be done in 8, plus the cooking, cleaning, and home making, PLUS taking care of the boy who is not always agreeable to my agenda.  It's really difficult and I'm constantly behind.  I feel like I'm being swallowed up on most days.

Sometimes when my son goes to bed on time I get a few minutes to work on my website or to do the dishes, but usually I'm stuck having to catch up on the work I should have been doing nine to five.   I tried having someone in home to help, but it's not really worth it past having them pick up because the boy demands my attention regardless.

 So while everyone else wishes they could work from home, I wish I could "WORK" from home.  If child care and transportation were available I'd work outside the house just so I could shorter working days and more time to myself and for my kid.

What?? No School!!!

JamieSue's picture

My son has had a terrible time dealing with the summer vacation transition.  He has been literally begging for school every day for two solid months.  We did everything we could to get him into a summer program but he was either too young or we didn't have the financial resources to apply to various programs. He's been so miserable that he's reverted to headbanging and spitting and nothing I do calms him. 

Two weeks ago I received a call stating that school was starting again on the 25th.  We went school shopping, talked about school, and got all excited about it.  When the day came he got up early, dressed himself smartly, and even wanted to gel his hair into spikes (first time EVER!)  He was so excited.

We got to the school and guess what?  No school for preschoolers till Sept. 8th.  The message I got was not intended for him.

Both of us were CRUSHED.  It took all my strength not to cry. It meant so much to him and we had been talking about it for weeks.

He's not been in a good mood today, though I can hardly blame him.  The bus goes by and he can't ride and he doesn't understand why.

I just hope this two weeks goes by fast.

 

 

Hello I'm new to this site and super confused~!

MizzJosephine's picture

Hello everyone!  My name is Josephine Webster, I am a 26 year old mother to four boys, one of which is named Joshuah who is five and was diagnosed with Autism last year.  I have been wanting to join a support network for a while but just haven't had the chance to do so.  Or maybe I didn't want to tell myself that I really needed help from anyoone other than the doctors and my family.  Obviously we all know we can only go so long with the support of them.  So I am here in hopes to get support from other parents when it comes to the daily life in which we all have become familiar with.   read more »

School and Specialty Clinic Reports

shootingstars's picture

Yesterday was Michael's home visit from his teachers. The girl who lives accross the hall from me has a little boy who will actually be in the other half of Michael's class. Michael is technically in the Special Needs Class, but  after the first few weeks they combine the two so the special needs children are not isolated and they all benefit from each other. Anyways, Dallas had his home meeting at 10 yesterday and mine was 11. I was in the hall cleaning off eyeliner from both sides of my dor that the neighbor girl did so nobody would think it was Michael. The other two teacher's came out and Michael got excitedf and ran up to hug them. He was equally excited when his teachers came. They think Michael will be able to do more group work rather than the independent work he did last year. It will be nice that he gets to adjust with the other kids this year.

We also had our Child Specialty Clinic meeting today. I had to walk Michael the 10 blociks, but he did better than expected. Thank goodness it did not start really raining. It just misted on the way there. He is looking very much ADHD according to the Vanderbilt they had me fill out. And his attention span is so short. So we get to add anew medication to the list. I guess it is a pretty new one. I thought she said Vocalin XR but her handwriting looks like Localin XR. Hopefully it will help. I hate the idea of pushing pills that do not work.  read more »

Drugs

WyattsMom's picture

Yesterday we went to the child psychiatrist. She wants to put Wyatt on an off-label blood pressure medication like Clonidine, but it's called Tanoflex (or something like that). I asked for the patch, but she was strongly pushing for us to try pulverizing the pills and hiding them in Wyatt's food. The psychiatrist likes the off-label blood pressure meds because they have a calming effect on many kids with autism. And she said they also use these same medications for treating tics (spasms that are caused by taking certain medications for a long time).

But before we can start Wyatt on the blood pressure meds, we have to schedule him for an EKG. That is to make sure he doesn't have any underlying heart trouble. So I had to call the regular pediatrician to see if they can schedule an EKG at a Children's Hospital, where they have experience administering such a test to a special needs child. I had an EKG last year at a local hospital and I cannot imagine that my 4 yr old son would cooperate in the same situation. Anyway, I am just grateful that we don't have to have any blood work done. Wyatt has never had blood drawn before. I imagine it would be a horrible experience for everyone involved.

I had asked the psychiatrist about a drug called Nalprexone that has no side effects other than sedation which is used in calming children with autism. The psychiatrist said that she does not prescribe that drug in her practice pretty much because she doesn't feel that it is commonly prescribed. I heard about that drug in a Medical Management of Autism seminar at Stanford, so I was surprised that our psychiatrist would say NO. She went on to say that Nalprexone is typically used to treat addiction problems. She made it sound like that drug is only given to homeless druggies, so why in the world would I want to try it out on my kid? Well, when you put it that way...

 

Bad Luck and a Shattered Window

WyattsMom's picture

Yesterday Wyatt had a seemingly irrational tantrum and shattered our downstairs window by putting his hand through it. I was standing right there next to him, blocking the window with my body, but Wyatt's hand shot out to the side and struck the window just right. He was only wearing his diaper, but amazingly only got one tiny cut on his forehead. The window down there is about 2' x 4', an unfortunately non-standard size and hopefully not too expensive (or a pain in the butt) to replace. Ha!

He had been tantrumming for about 45 minutes and I was doing the "ignore" strategy. 45 minutes is his record for tantrums. Wyatt wanted to go back in Daddy's car and be driven around all day and possibly be taken out for french fries. Either that, or he hoped he would be driven to day camp like last week. Last week my husband dropped Wyatt off in the mornings and I picked him up afternoons. Another theory we have is that Wyatt is used to being driven into our one-car garage. We don't park Daddy's car in the gargage. It could be one of those theories that set Wyatt off, or maybe just the fact that sometimes Wyatt gets really agitated in Daddy's car and often has tantrums because he doesn't want to get out of the car. We decided that maybe we should make a rule that Wyatt never get into Daddy's car unless on the return trip we go in Mommy's car.  read more »

The Ghost Wedding

WyattsMom's picture

We went to a wedding. Actually, we observed my cousin's wedding from our car. We were assured that child care would be provided and that the fact that Wyatt has autism would be no problem.

We drove up to a little tucked away country club garden, beautiful in the late afternoon light. Since it was a Bhuddist-Jewish wedding, it was kind of colorful, with exquisite paper lanterns and men in orange robes or yalmukes, and ladies in their finest. Soothing, yet hip music was playing in the backround. Of course, Wyatt started screaming immediately, so we rolled up the windows so no one could hear him. He wanted out of the car so he could terrorize those lanterns.

We parked the car and Marc came back with the distressing news that the child care was not in a separate area, but rather just at a small table off to the side right where they were just about to have the ceremony. The staff was a lady in a very fancy purple dress and two 12 yr old girls. The childs' supper was Dominoes pizza, and Wyatt doesn't like pizza. He was hungry. I should have brought him some snacks, but we were rushed to get ready and we were late getting there. It was about an hour long drive.

So we left. I hope my family will understand that I didn't want to ruin their wedding. There was no way Wyatt could have been managed and contained at that wedding. And I was not about to run around after Wyatt sweating and aplogizing and having people give me horrified looks.  It was simply not an appropriate setting for Wyatt.

Still, I did get to hover near the celebration and see the festivities. I felt like a ghost. A ghost wearing pantyhose, which I haven't worn for YEARS, and brand-new fancy shoes for the occasion. I do hope my family appreciates that I at least made the effort.

Seatbelt issues

Yamelal's picture

New to this site and blogging all together. So if I am posting in the wrong place, please let me know.I have an 8 year old autistic son who has  finally discovered how to unbuckle his seatbelt in the car. The other day he was in the back, unbuckled his seatbelt, climbed up to the front seat and opened the front passenger door, all while I was traveling at 60mph on a busy Hwy.  It all happened so fast, I could not pull over fast enough without causing mayhem on the Hwy. He has since done this a few times. The child locks are always set in the back, so he could not open the back doors.  But even with the door locked in the front, the car door can be opened just by pulling the handle. Has anyone else ever experienced this!! Do you know of any additional restraints that are available in the market so that he cannot unbuckle his seatbelt?

 

Misbehavin'

lorinheller's picture

Y'know, sometimes in the midst of my chidren screaming, resisting doing stuff, and just plain, misbehaving, my wife and I wax philosophical about how their misbehavior may actually be consistent with that of typical children their age. And isn't that a relief? Don't we feel so much better knowing that our kids may be acting like typical children? Yes. Yes, we do.

Then the kids actually find ways to increase the volume.

And why yes, that DOES feel like a migraine coming on.

And yes, yelling at them - ineffective as it may be - suddenly seems like it might make ME feel a bit better, if only temporarily.

I haven't. Well.... yet.

And I have to also remind myself - If this IS typical misbehavior, then we - as parents of kids with special needs - have one advantage that parents of typical kids don't have.

Respite.

And then I laugh.... Maniacally.

Kids, I love you.

Horsies

WyattsMom's picture

Wa hoo!  Wyatt got to ride 'em.  They said he was a little intimidated at first, but he had a great time.  Right when I walked through the door to pick Wyatt up today, a worker whom I hadn't met before ran up to me and exclaimed, "I LOVE YOUR SON!"  So, he must've been soooo cute riding that horse.

Gotta pick my mom up tonight at the airport.  She'll be here until the end of next week.  This morning I gave my kitchen a lot of attention, vacuumed a bunch, and washed the guest linens.  That way it looks like I'm not desperately hoping that my mom will whip herself up into a cleaning frenzy and scour my house from top to bottom.  Even though I am desperately hoping that very thing. 

"Well, son, I AM a huge fan..."

owensmom99's picture

I've gotten hooked on watching the 2008 Olympics.  It's easier to watch them than it would be if my sons were at home, because Owen probably wouldn't be interested in them, and he would be yelling at the TV:  "I HATE it!"  Since my boys are with their grandparents at a time-share vacation condo in another state, I am savoring the opportunity to soak up the Olympic coverage in peace.

For most of my childhood and even during my college years, my mother and I watched the Olympics together with a fervor bordering on obsession.  Winter AND Summer versions.  Jim Craig and Rowdy Gaines, Dorothy Hamill and Nadia Comaneci...I can fondly recall all of my Mom's favorite Olympic stars.  My three siblings never caught Olympic fever, nor did my Dad.  It was just Mom and I, glued to the screen for a few weeks every four years.

Now, Mom is gone (she died in 2004).  I miss the joy of watching the Games with her.  I wish that one of my boys could help me start a new mother-child Olympic-watching tradition in our family.  But I'm not holding my breath.  We'll see what happens when they return from their trip with Grandma and Grandpa, but I anticipate that Owen will follow my prediction ("I HATE it!"), and his big bro will just sigh and say dismissively, "I'm just not really a huge fan of the Olympics."

Yep, that's my firstborn's favorite catch-phrase these days:  "I'm just not really a huge fan of ___" (fill in the blank with anything imaginable).  If nothing else, his latest saying is versatile.  At a moment's notice, he can apply it to TV shows, clothing styles, Xbox games, or food items.  In whatever way he uses it, his proclamation manages to sound at least vaguely scornful, bored, AND effortless at the same time.   read more »