I feel so isolated and am soooo tired of fighting for absolutely everything!!!

Angela - posted on 08/13/2010 ( 10 moms have responded )

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My son is 8 years old, has a twin sister and an older sister of 10. My son was only diagnosed as having an Autistic Spectrum Disorder in January of this year! I knew it was Autism several years before this after reading a book that reduced me to tears as it was as if someone had written all about my son!!! I could not believe that here was a book explaining everything about my son, from not answering to his name, lining objects up, his profound obsession with Thomas the tank enjine, his over mobility and flat feet, his sudden screaming, running around, constant climbing, flipping and flapping, his irrational fears,his inability to understand his own emotions or voice his needs and his unbelievable distressed, violent tantrums that last for hours, the list goes on! But so called proffessionals refused to listen to my concerns telling me he was a perfectly 'normal' little boy as his reading ability was well above average and probably just needed more 1-1 attention!!! After continually pushing, they then said they thought it could possibly be ADHD! I disagreed and after finally being referred to the relevant proffessionals was proved right yet again, there have been several other health problems that i have had to fight equally as hard for ( including much needed operations!) to get my son seen by the appropriate people and recieve the appropriate treatment. In fact i am still fighting for many and don't know how much longer i can go on like this for. I feel angry that most 'proffessionals' still don't seem to have a clue about Autism! I was struggling with my son from when he was a baby and raised several concerns with my health visitor. I think that because i had twins and a 2 year old they put my concerns and feelings of inability to keep Adam safe ( i used to sarcastically joke that we needed a padded room for him! in fact i now know that could'nt have been more true!)down to exhaustion and post-natal depression! I was just told over and over by the childrens nurse that was coming round weekly and observing my sons difficult behaviour at such a young age, that i was a very good mum and was doing everything right and that he would soon learn not to do certain things the more he hurt himself!!! He of coarse did not learn from hurting himself and we recieved no help!!! All of his accidents including concussion and a broken collar bone aged 16 months still break my heart!!! I just want to be able to help my son in any way possible, is that really to much to ask for when you scream for help?

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Angie - posted on 08/14/2010

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I learned that my son had autism when he was almost three and I was pregnant. He's 8 now and I still have family and friends that don't believe he has autism just because he's so high functioning. What they don't realize is it took A LOT of work to help him function so highly. I skipped the route of therapists and dr.'s and learned to do my own therapy with him, and I homeschool my kids. It was much easier for me to do this than to try to constantly convince people that he didn't receive the wrong diagnosis. A friend of mine has two kids on the spectrum, and she couldn't get help. I knew her youngest had autism when I started babysitting him at 9 months. While she was busy trying to get appts. scheduled, I began working with him immediately. We videotaped my sessions with him so that dr.'s could see what we saw. She did the same two years later when nobody believed her older son had Asperger's. In both cases, the dr.'s watched the videos and saw immediately that they were on the spectrum and she got her dx's a lot quicker this way. They couldn't deny it, it was right in front of them. No, you're not alone. Unless you have a severely autistic child, too many people won't listen.

Shari - posted on 08/13/2010

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Angela,

I am so sorry for all your struggles. It does not help when no one takes your concerns seriously. We had to take matters into our own hands with our sons after many battles with their pediatrician. Now we have a developmental pediatrician who clearly understands what we are going through. He has helped our boys greatly. I would suggest looking for a developmental pediatrician...there's not many out there but they have far more knowledge about our kids.

Best wishes!
Shari

Melissa - posted on 08/13/2010

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I am isolated too. I hope you can find him the help he needs. That can make a huge difference.

Kathleen - posted on 08/13/2010

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Angela,

I want you to know you aren't alone. We have all been through this in one form or another. the disbelief of the doctors/family/schools to see or hear what you know. Hugs! we have all had the thoughts that we are doing or did something wrong. Hope things start to get easier for you.

Kathleen

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Christine - posted on 08/14/2010

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wow! that sounds like my 6 year old son. He was diagnosis with PDD NOS ADHD combined. I hate taking my son places because of his behaver. Sometimes I feel like giving up. My husband I have no family suport and the people that work with my kids are now threating to take my kids because I just don't know how to deal with him. It's really hard to deal with on your own. He also has a sister 8 with ADHD Everyday I just feel like running away from them. Because my son is just so hard to deal with. But I love him so much.

Rita_2_davey - posted on 08/14/2010

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Dear Angela: Just know that you are not the only one fighting for your child. My daughter has done so for years with my darling grandson. Of course they put him on medication at the age of 3, tried Five Counties (which is where they are assessed) to no avail. He would scream, throw tantrums, hit,scream, you name it, he did it. She has yet to have the school Physciatrist to check him out. The school keeps saying we didn't receive your Pediatricians' note. Finally this year (grade 6) the Pediatrician called the school and he let them have it. Mind you it was to late in the year. Hopefully this year he will be seen and treated properly at school, instead of them saying he is just disobediant, defiant, wont' listen. Well people wake up and smell the coffee!! My poor grandson has been in trouble in school basically half the time hes' been there. Last year alone the calls' from the school to my daughter or myself "come and get him, or hes' gone" I've totally lost count. Its' like these parents have to bang their heads against a brick wall, and even that doesn't help. Pls. make sure that when your son enters school that a Child Phyciatrist checks him out, and DO NOT take NO for an answer. It is heartwrenching to watch. Then you bring your child home from being in trouble, try and discipline him and it doesn't work. Their poor little brains just don't get it. Its' just to bad with this illness being on the rise that Doctors, Pediatricians, Physciatrists just dont' get on the ball. I will be thinking of you, just as I do my grandson daily. They treat children with a cold better than they do with a disability. It is so wrong. Like I said, get the help you need and if help doesn't arrive, advertise it, whatever. Just have your child given top priority. Thats' what he and all others deserve. They want to be loved as well and not just pushed aside like a pen on the teachers' desk. It is so wrong. Take care and I hope help comes to you.

Angie - posted on 08/14/2010

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I wanted to add, also, that you are not crazy in your observation that most professionals are clueless about autism. I have so many stories of how my friend and I had to train the therapist that came to do in-home therapy with her youngest son, about autism. It was really sad, and completely inexcusable. That's why I didn't go that route. I learned from a couple of awesome books and parents who were in the trenches learning as they went on a special needs group on Yahoo. You CAN work with your son on your own, don't let anyone tell you otherwise. My son started out as either pdd-nos or high functioning autism, they weren't sure which (it's all the same, though) and now I don't think he would be diagnosed at this point. The youngest of my friend's sons started off as being severe-moderate autism and is now high functioning/gifted at age 6, all improvement being from home therapy only, no school therapy, no 'experts'. Once she figured out the home therapist didn't know what she was doing, she stopped the EI program.

Angie - posted on 08/14/2010

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What about doing it yourself would be expensive? Printing things out yourself? That wouldn't be expensive if you just print out symbols you need as you need them. I found this: http://www.google.com/images?hl=en&q=mak...
You could copy and paste onto your word pad or word processor and make as big or little as you would like, then print and cut out the ones you want. You would want to build his use of these gradually, so you wouldn't have to print a lot out, just the main ones you wanted him to use to communicate. I'm sure you could find others, type in 'Free Makaton printouts' or something along those lines. It seems this would be cheaper than buying them. Then, just work on one or two until he understands to use those, then add one or two more. It's just like using sign language, you slowly introduce the idea until they grasp it, then you can add more. Is he verbal at all, or just forgets the words, or what? If you'd like, add me on facebook (Angie Lindsay, picture of a dog's face) and we can take the discussion off here. I have a ton of questions for you. Ha!

Angela - posted on 08/14/2010

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Hi Angie,

Thanks for the advice, it seems like you have alot of expertise!!! I am trying to look into teaching my son some Makaton to help him communicate his needs, especially to use with teachers and other people ie to ask for the toilet! Also for us to use with him as he responds better and understands more with something visual rather than verbal. The only thing is i don't really know how to go about it? I do know though that to try and do it myself is quite expensive, any ideas would be much appreciated!

Best wishes

Angela

Angela - posted on 08/13/2010

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Thank you so much for replying!!! I was'nt sure if anyone would! It means so much to hear from others who understand and care! I am very grateful!!! It is such a relief to have others in the same situation to talk to!!!

Thanks again
Angela

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