never had to blog before

jnc772000's picture

so i have never had a blog before. but i think maybe this is healthy and refreshing at the same time. i sometimes feel sick when i think about ben's future. ben is my two yearold son, who was diagnosed with autism about 4 months ago. funny now he is getting a lot of services and i have yet to see a real improvement. in fact in some areas i think he is worse. in my mind i thought that once ben started getting treatment he would magicaly start talking and be fine. it wasn't until recently when i started to realize that this was him for the rest of his life. and maybe he won't ever talk to me and maybe he won't ever move out. i laugh because i really thought that he was going to just "poof" be better. but now i am not so sure. i take things day by day and i try not to think about what will happen tomorrow. but i'll tell you one thing i keep repeating to myself is "god will only give you what you can handle".

Hang in there!  My son is

coopsmom's picture

Hang in there!  My son is now 4.5-diagnosed at 2.1.  No words-absent from our world, and stims up the wazoo.  We started VB ABA home program immediately-20-40 hours per week depending on availability of therapists along with speech, ot, dt, and pt.  I remember saying back then, if he would only speak, I would be the happiest woman alive.  He did-from 2-3, his language and attentiveness blossomed....the hardest and best year of my life with him.  He still makes progress, but at a slower pace with some setbacks here and there.  School time came, and the district offered us their joke of a program, and I fought the district for a private placement (a 40 hour per week VB ABA school) and won.  I still have days when things are bad that I say well-he is going to live with me forever, and that is fine....yet the next day I am known for saying-ya know, he is going to be fine-he is recovering.  We also do biomedical which has given us great gifts in their own right.

 We all feel the way you do  today, as you know you are not alone-I know we were chosen by God to care for these kids and he expects us to give it our all to advocate for them. 

A behavioral

futurebehavioranalyst's picture

A behavioral perspective.  After reading so many theories about causes for autism, I've realized it's more comforting to read about the many ways to help these kids, through treatment.  I find many articles and studies about genetics and causes for autism lacking in parsimony.  They tend look at autistic behaviors as symptoms of an underlying mental illness, which yes, I understand autism is a disorder, but why focus on the label and the reasons why a child has autism.  Many of these studies suggest that autism is a disease and a "cure" will soon be developed, failing to see that the behaviors of an autistic child are learned.  I just hope people don't develop false hopes for a miracle cure, as I don't see this happening any time soon.   I believe we should deal with the disorder in terms of controlling behaviors by their outcomes.  We shouldn't be worried with why it happened, we should focus on what to do about it.  But there is absolutely no hope for an overnight treatment.  As a student who has worked with young children with autism for two years, I can in no way relate to what it feels like to have a child of my own with autism.  My heart goes out to all families who have been touched by this disorder.  My role now is to inspire hope in those who feel there is none.  I am dedicating my life to studying and applying treatment for children with autism, specifically applied behavior analysis, and hope only to inspire families to be optimistic.  Yes, it can take several months before you see improvements, sometimes years.  Your son was lucky to be diagnosed so young and you should have much hope for his future, as long as treatment is started immediately.  The improvements will surface slowly, just be patient and keep praying.  In regards to the behaviors of autism, I've noticed that these children are so completely honest in their expression, not deceptive or manipulative as some educators I've come in contact with may think.  This is how they've learned to interact with their environment, how they've learned to get the things you and I take for granted.  Here's a quote to go along with this idea.  "The child with autism, in all his honesty, is the closest thing to God we have on this earth."

This is a great post,

Hannah Zimmerman's picture

This is a great post, clearly you have found a healthy outlet from all that has been put on you. When I was searching for autism related stories and blogs I found a really good article opn the Pitch website about kind of the same thing it sounds like you are going through. Pretty much one of the best school district in MO is being accused of abandoning its autistic students. Here is the link if you would like to check it out...www.pitch.com

This has helped me a lot,

autismretortdotcom's picture

This has helped me a lot, focus on the WHAT and HOW type questions that include I, instead of WHY?

WHAT CAN I DO TO MAKE THIS BETTER? etc

Yes, life may have served up a nice steaming pile of crap for you to deal with, but what choice do you have?  I try to look at these things as somekind of cosmic test.  It's how you deal with the circumstance that shapes you, not the circumstance itself.

I must say that blogging is very theraputic too.  Here's mine .... http://autismparents.net

Good luck!!!!

Don't worry....though Ben

ziggypop's picture

Don't worry....though Ben may always have Autism, he most likely WILL show many signs of improvement in treatment. My twin boys, both diagnosed with Autism at age 2, are now only 3 1/2 and speak well over 100 words each...adding new words every day! When they started therapy, all they could do was babble. They had no or little eye contact and were distant. Now, you can hardly tell them apart from their neurotypical 3 year old peers! Just don't give up and be persistent. Be thankful that Ben was diagnosed so early and has early intervention....it makes a world of difference!

 

 

Smiles from Ziggypop

The journey is different and

Perseverence's picture

The journey is different and at times more painful - but oh so worth it.  At two my son had essentially no words and by three he was completely echolaic (would repeat whole movies but still no usable language).  Everything was a tantrum (I can't tell you how many times I had to just leave my groceries in the cart and make a hasty and embarrassed retreat from the store).  He wouldn't meet anyone eye to eye, had never pointed to anything.  He was in kindergarten before I got him trained, etc., etc., etc.  He has since graduated high school, drives a car, has a job, and (with a little help) is managing his own finances.  He is not yet ready to move out on his own, but I do have confidence (and am equally terrified) that the day will come.   It's hard sometimes not to "jump" to the finish line - but there is a lot of life to be experienced between 2 and 20 (even for people with an ASD).  Take some time and a deep breath - and yes there will still be many enjoyable moments to savour.

I just began blogging

ChristinaBellOTR's picture

I just began blogging myself. I have different reasons, though. I am a pediatric occupational therapist and I was feeling rather disconnected with the autism community. On the one hand, I work with children with autism every day - mostly I see students for their school-based therapy. On the other hand, no matter how many walks and events I attend and how many books and articles I read, it is very difficult to get a feeling for how my clients and their families view my therapy.
From my experience, you're desire to have Ben and his issues instantly improve is pretty common. I think it takes a lot of courage to admit this, as you have. I have worked with many families just after or during diagnosis and it can be very overwhelming. Many of the 0-3-year-olds I work with receive 20 hours per month of therapy (in-home speech, physical, behavior, and/or occupational therapy) when they are diagnosed with a developmental delay. That number usually jumps significantly with the autism label - sometimes to 54 hours per month. The stories I hear are often full of obstacles just to get to this point. After getting all the therapies in place is when the real work begins. There are nearly daily visits, sometimes for hours at a time. There are therapy "homework assignments" and the caregiver education we all try to provide. The list goes on and on, but it should all be worth it in the end.
Although I am confident that we therapists help our clients, I actually just posted on my new blog some of the questions I have about my own efficacy. I shared some recent interactions with families I used to work with (0 - 3-year-olds who have graduated) and I got some really positive feedback. I think that if, after tireless hours of therapy, you find yourself wondering when the success will come, talk to other families who have been through it. Because so many parents I work with end up trying to deal with all of the physical, emotional and social demands of autism all alone, I commend you for joining this support group early. I also encourage you to visit my blog (http://ottotherescue.blogspot.com/) and share your journey with me and other therapists. We'd love to share our experiences and opinions with you.

When Michael first started

shootingstars's picture

When Michael first started therapy I was expecting the speech portion to suddenly get him talking.  With us, they started therapy as they did the evaluations and finalized a diagnosis. I found myself (unjustly) angry with him on days we had a bad therapy session, which was most days. Somedays I was angry with the therapists. But the slow progress was what we needed for him to start school last February. There I saw an immediate change in my three year old. Different things work for different children. I guess we just have to keep trying until something clicks.

As an occupational

ChristinaOTRL's picture

As an occupational therapist, it is often hard to know how families feel about the therapy I provide. I see 0 - 3-year-olds in their homes and older children at school. I am interested in your comment that sometimes you were angry with your son's therapists. In an effort to continually improve my own practice, could you share more about those feelings. Therapy can definitely be hard for everyone involved, but do you think there was something the therapist could have done to help you be okay with the day's session?

www.OTtotheRescue.com

http://ottotherescue.blogspot.com/

Christina

I apologize for taking so

shootingstars's picture

I apologize for taking so long to reply. I just now found the track section :s

Michael saw 4 therapist-2 speech and 2 ot. Only we never knew who he would see until the woman walked into the play room to get us. I really did not get as upset with the OT as much as the speech. He saw one that was great, Treva, but she was just a temp filling in on the other's maternity leave. And then go figure the other one he saw left for her leave and the one who had already had her baby came back. She tried saying Michael was just misbehaving and that she disagreed with Julie's assumption about Autism. (he got his diagnosis a month later) And she only saw him a few times before she was pushing for dismissal. I think for therapy to really work, they need to find what the kid will do and run with it adding small challenges as they go. Michael is horrid at transistions and they pushed too much too fast.

Your child's world is

WyattsMom's picture

Your child's world is changing and first he must learn to learn. Hang in there, HE WILL IMPROVE and he will be happier when he has new skills. Progress can start out slow but I have been living through this for two years and I can tell you that firsthand that things will get better.

I, too, would become angry with my son especially if I tried to work with him myself. I mostly felt intense stress and I would love a therapist one day if Wyatt seemed to be responding, and the next day if it wasn't going well I would have to bite my hand to keep from screaming out, "Stop, stop, and don't ever come back!"

It was very difficult in the beginning for us, too. The very first sessions were filled with screaming and crying if I would so much as stand to leave the room. They say that things often get intensely worse before they get better because children test and resist. I found that to be true.

Also, try not to worry so much about your child never moving out. When the time comes for him to be more independent, it will happen. Maybe he will improve so much that he will lead a typical normal life or maybe he will need a little help and the state will pay for him to live in a group situation. Either way, you are on the right path to helping your son reach his full potential.

P.S. Welcome to blogging! I am a newbie, too, but I'm all into it right now! It's been very therapuetic.

Fear of the future. 

lorinheller's picture

Fear of the future. 

That's the biggest fear my wife and I have.  We've had actual dreams of meeting our son - homeless - on the street.  There's a children's storybook showing a mother cuddling her son in her lap - the son being an adult.  We see things like that, and they make us cry.

We're scared of our children not being independent - That we're going to have to take care of them for the rest of our lives.  But we're even more afraid of what will happen to them after we're gone. 

An expert diagnostician in the autism field has a positive prognosis for our daughter, but says that 90% of children with my son's level of autism (moderate) will never be fully independent.  We try to take things day-by-day, and appreciate the progress at the rate it happens.  We try not to focus on an end-point, but plan for the future. 

 But this fear stays with us.  What happens to an adult with autism who does NOT become independent?  What experiences can people share who have experienced this?  Though we'd like an independent outcome, we're not as attached to that as to knowing that even if it does not happen, our son will still be happy and OK after we're gone.   

 

 Wish I could tell you all

turmangirl's picture

 Wish I could tell you all will be well.... For that matter, I'd like to tell myself that!   My precious 8 year old grand daughter is also "moderate".   Fear of the future is a shared thing around here.   When I allow myself to jump forward with the "what-if's", I have to reign myslef back in and remember that today is what we have and where we are.   

My spirit helps me with this...I can do nothing on my own, but with God...ALL things are possible.

My best to you and your family.  Thanks for sharing.