Why don’t you believe me

5 Jun

Why don’t you believe me?

As a parent to a child with Aspergers syndrome, I’ve heard myself ask this question a thousand times in an array of situations.

I really couldn’t care anymore if the lady up the road thinks I’m a bad parent and my son is the child of the devil!

But there have been some situations in the past when I have felt like bashing my head continuously against a brick wall, times when I needed support and understanding. People I felt should be naturally supportive were not, instead they made me feel as if I was an overreacting pain in the arse, one who had a problem with parenting… One who was full of Nonsense!

Those people were my child’s teachers, these people almost cost my child his diagnosis!

My child is challenging at home yet he doesn’t show such behaviour when at school is a common issue for parents who are going through the procedure of trying to obtain a diagnosis of Autism for their child (this is so common it should be added to the criteria for diagnosis)! It’s not that we are crying out for our child to have an attached label but without it we have little chance of obtaining the support we crave for both our child and ourselves.

It’s important to remember that us parents are not alone in such situations, but at the time it sure does feel like it!

It comes to a point when one really does question their own skills as a parent, we often find ourselves questioning our own abilities to do the job correctly. I actually started to envy other parents, their relationships with their children! “Why doesn’t their child violently hit, bite and kick them?” You start to wonder if your child loves you and if he doesn’t then why the hell not? You start to walk on dangerous ground when you start to wonder if this really is a case of “poor parenting”

It’s not easy knowing that your child is sat like some little angel in the class room, yet a few hours later his walking through the door and trashing his bedroom! Then someone suggests the autism spectrum, at first you instantly refuse to believe it, but the more you learn about it the more you realise the pieces of the puzzle begin to fit, in some sense you find comfort in the fact it isn’t down to you, your child doesn’t hate you, he just has difficulties regulating his own emotions, why? Because his frustrated with over loaded senses and an altogether different take on the world.

You climb mountains to get on that waiting list for an assessment, when you finally get that appointment the paediatrician nods his head and tells you his confident that your child has traits consisting of a diagnosis of autism ( in my case Aspergers)! More assessments follow and every medical professional your child meets draws them very same suspicions. Then they requests feed back from your child’s school and although you understand there to be no challenging behaviour you are confident that the school will share other concerns, odd behaviours and so forth!

So, why is it that they don’t… Instead they write a report that indicates your child is a typical boy, a child who communicates on the same level of that of his peers? Why do they fail to highlight any bullying, obsessions or quirky behaviours?

I speak for thousands of parents who have all had their child’s diagnosis held up or dismissed completely as a result of such report writing!

I remember feeling completely alone, So angry, So let down.

Every concern I had was disregarded as a lie, my child’s head teachers blamed me for the way my child refused to dress for school of a morning or when he failed to sleep the entire night. I began to hold back my concerns for fear of being judged!

I had now entered a new world, one that no longer got left behind at the school gate! A world of TAC meetings, CAF forms and assessments, a world of battles ones I’d eventually become accustomed to!

Sat in my doctors office, head in hands I cried, I cried so much I could hardly get the words I needed to say out of my mouth and into the listening ear of another! I was tired of fighting the system, I was tired of fighting my child to get out of bed and dressed each morning, I was tired of having my concerns pulled to pieces, most of all I was tired of being me.

It doesn’t help when your own mental health begins to slip away, when you find yourself only able to get through a day once you’ve tanked yourself up on Prozac! I remember reading my child’s education record some 2 years later, I remember the statements made in relation to my own mental wellbeing! What still makes me angry is the fact that my own health only suffered because of them… I didn’t do this to myself, they did it! Being strong enough to now say that with confidence is a wonderful thing!

Despite the depression I continued to battle on when eventually one year after that report my child received an official diagnosis of Aspergers Syndrome!

Why now? He had now seen a number of professionals and the very last assessment was the one that finally closed his case. A video interview with a speech and language assessment who specialised in the autism spectrum, plus a play assessment which helped highlight his intense special interest and rigid thinking.

School still failed to acknowledge his diagnosis as they should have, he was no longer 5 but 8 his traits were more noticeable yet the school failed to make prober adjustments. It normally came back to the issue of little man having no statement of special educational needs (something I later went on to successfully acquire, though not without a fight). Eventually though things changed direction and finally little man settled at home. This was down to working out his triggers that lead to meltdowns, different reinforcements for desired behaviours etc. Not everyday was problem free (far from it) but the hitting slowed a bit and I felt as though I had gain some control back. This was due to now having a better understanding of his needs. However, with the school’s complete lack of adjustments or understanding, little mans challenging ways started to surface once more… Only this time, it was within the school setting!

It’s a long story, but put it this way… That same child (the ‘typical’ little boy) was now excluded on a weekly basis, never taken on school trips and even taught In isolation. All this lead to a disability discrimination case which I finally agreed to settle before the hearing once all my commands had been met! (letters of apology, rewriting of policies and teacher training)! What a turn around!!!

My child now attends an independent special school for children with autism and Aspergers. Life isn’t perfect, who’s is! But we have the diagnosis, the statement and finally the right school… One where I no longer need to ask “why don’t you believe me”

I’m in the final for the mad blog awards in the inspiring category voting closes today (6th June 2012) at 5pm! Please if you love the blog pop over and give us your vote. Mum and Dad Blog Awards 2012

6 Responses to “Why don’t you believe me”

  1. exitsouth June 11, 2012 at 1:29 am #

    so once again some one else is elequently writting about my experience- except i refused prozac!! why oh why is it all so hard….

  2. Gloria Cruz June 9, 2012 at 1:52 am #

    I felt like I was reading my life..,I’m still in the process af the Asperger’s assesment(my son is 10) I had so many breakdowns trying to explain things..it took me to move to another state to finally have someone understand …and I was able to get support through alot of people..Im grateful for the teachers my son has now..they are fully supportive

  3. sara June 8, 2012 at 11:22 pm #

    Wow….. thats all i can say, this is very similar to my son, but he is 10yrs old. Meltdowns at home, but fine in school….. we are at the beginning of our journey, he has been assessed by a peadatracian who mentioned learning difficulties and aspergers. waiting for the next appointment. but yes i am worried about school, although, did have a good meeting with them last week, so hopeful to have them backing me :$
    I hope everything stays calm at home x

  4. anon June 6, 2012 at 8:30 pm #

    I can identify so much with this ….. we were having so many issues at home, but school said “he’s fine” …. “he has no issues” ….. and the classic …. “if he DOES have a meltdown he manages to recover quite quickly” (thought he was fine!)

    Things much better as he has moved on up the school (he is now 7), but still not particularily supportive.

    Hope to meet you at BritMums. Have not yet shared on my blog my son’s diagnosis (Aspergers) so will remain anonymous for now.

  5. StHullClaire June 6, 2012 at 4:35 pm #

    That was just like reading my story, however my mental health went AWOL at aged 3 years, and his exclusion from nursery! Thankfully as an SLT I knew what we were dealing with and finally at 4yrs 10 we got K diagnosed with Aspergers. As an SLT who specialises in ASD assessment and early intervention, I see many schools who don’t ‘get’ Autism. They just do not see the subtle difficulties; he’s sociable and talks to everyone about Dr Who = he doesn’t listen and take turns but talks atanyone on his one obsession! Some areas in the country are better than others, I hope the families I work with feel they get the best as per NICE guidelines. As for my son, thankfully school have accepted his diagnosis and, although don’t get it right all of the time, are at least trying hard. He has full time support incl break & lunch times, and has no Statement of SEN (yet!).

  6. Violets Diary June 6, 2012 at 3:48 pm #

    It makes me so angry that we are all writing similar things and the powers that be don’t seem to be listening. We struggle to get any support because B doesn’t display any anxiety at school. It is all saved up for his sister and me at home where no-one else can see.

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