Dealing with Autism: Jo’s story

Last year Jo was kind enough to share her experience of an ectopic pregnancy with us and you can read about it here. In April 2004 her beautiful boy was born. He is autistic and Jo shares their story here. She sounds like a great mum to me and I know that T is a fabulous little boy. 

Many of you have read my story about my ectopic pregnancy.   So when I finally got my positive pregnancy test result you can imagine the joy but also the fear that we felt. I was given a very early scan due to the risk of another ectopic so when I sat in the sonographer’s room and they couldn’t see anything I thought here we go again. I was called back a very anxious week later and there was what resembled a little shrimp with a heart beat in the right place.

My little boy T was born in 2004 and we couldn’t believe it, we finally had him in our arms and I couldn’t wait to get him home. A few weeks after getting him home I was holding him in my arms and looking into his eyes and he looked away. I thought that was strange and held him in front of me holding his gaze and he looked away again. I moved him around locking onto his eyes like a radar and every time he averted me. I thought no more of it but found it strange as I had held babies before and they always stared back, especially with my glasses on, as they want to grab them!

T was a healthy baby, gaining weight, lifting his head too early, crawling and walking before his peers, he loved playgroups and when he said “mam mam” I was so proud.

Then I noticed changes in him. He would scream if I mixed his foods, he hated loud noises, he would tip his walker upside down and spin the wheels fixated on them, he ran on tip toe all of the time, he never pointed or waved, he regressed and stopped babbling and talking whilst his peers were talking to their Mothers.  He would scream if I walked into a shop or supermarket and he never slept (the last one is normal isn’t it)? He would wake every 2 hours until the age of 4. I was a wreck, I felt I couldn’t go to playgroups or shopping as people stared and judged me, he wouldn’t eat what I offered so I worried he would starve and he wasn’t interacting with other children. My husband didn’t know what to do either so I felt lost. I enrolled him at nursery at 2 years 9 months for 2.5 hours a day as I thought it would help him. As we walked in on his first day T was fixated on a mezzanine in the main hall, a lady came up to me and said, he is transfixed by those straight lines, does he do that a lot. I explained he has a lot of quirks and his speech is delayed. She told me to talk to my health visitor, which I did and he was placed on speech therapy within 3 weeks. During the day a child was playing with Thomas The Tank Engine which is T’s favourite (very common obsession with autistic children)  and he screamed, threw himself on the floor like something out of the exorcist and not even I could restrain him. I was on the floor holding and soothing him and looked up to see the whole nursery and staff looking at us. I got up and said “I understand if you don’t want us to come back” and the Nursery Manager took me outside and said “no, we are watching you as we need to learn what you do to calm him, we want him to stay”

Fortunately there was a lady from our local disability team working with another child there and she noticed what happened and took us under her wing. She was like our guardian angel into this world that I knew nothing about called Autism. She secured funding for T to have 1 to 1 support at nursery as I was staying with him every day, which defeated the purpose. Watching other Mums go off shopping and for coffee I felt they were the luckiest people in the world. What I would give for 2.5 hours to sleep, read a paper or recharge and prepare for the next 21.5 hours of meltdowns, no sleep and not knowing what my son wanted or needed or what was wrong with him. I was soon appointed a lovely lady called M who got to know T and managed to get him to do things I couldn’t. I had a 3 year old in nappies who was terrified of the toilet, didn’t speak, had a rigid diet and would only be happy with his parents, but M managed to gain his trust. At 4 years old I got an appointment to attend a Child development centre for a week where T was assessed by every available medical professional, psychologists, occupational therapists, speech therapists, dieticians, paediatricians, dentists and opticians for a week in a nursery setting with other children.  I was finally given the diagnosis. “Your son has autism”.

I had heard vaguely about autism when it was in the media about MMR jabs but had no idea what it meant as it didn’t affect me at the time. I asked if he would grow out of it and their sorry face said it all. I was given an information pack, sent away and followed up by a home visit. I attended every meeting, courses, and looked on the internet at sites that were in the pack as we were told not to hit the internet as soon as we left the CDC (Child development Centre). I became what is called an Autism Warrior, I learnt about diets, Makaton, SLT, PECS, DLA, IEP’s and all kinds of jargon only known to autism mums all desperate for a breakthrough. I also learnt how compassionate companies were such as cinemas and theme parks giving, free passes, fast track passes, free carers entry just so these children can have some fun with the least distress.

We decided to put T into a mainstream school as I wanted to give him a chance and see how he coped. We managed to get a full statement which secures funding for T’s education so his 1 to 1 from nursery applied for the position at his new primary school and the Head loved her dedication and input so much she was given the job on the spot, so the transmission was seamless. It was reassuring to know he was with someone who cared for him and knew him from a young age. He progressed through primary school but I was aware that although he could read and write he wasn’t keeping up academically. I worried he would struggle at junior school and I also worried about bullying. Some children knew he struggled to interact or got scared and they would shout in his face or keep touching him and laughing when he reacted. I knew he couldn’t communicate to me if anything happened to him and M couldn’t always be there so I made the decision to move him to a specialist school so he would not be in any danger and have teachers who knew about autism. He no longer required a 1 to 1 as went from a class of 30 to a class of 7 with 4 specialist teachers.

Unfortunately divorce rates are higher with families with an autistic child and my husband and I became another statistic however we are both very actively involved in T’s life.  T is growing into a lovely, talkative, IT crazy, handsome young man. I have no idea what the future holds but I know if I don’t set any limits with the right support he has every chance. If I had a wish it would be that in the future he will have a job, a family and happiness and independence.   Something I used to take for granted.

This poem really explains my journey.

Welcome to Holland – by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Thank you so much, Jo x


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