Friday, April 29, 2016

Somewhere on the Spectrum. Written by Single Mum of 3

Somewhere on the Spectrum

In 2004, I gave birth to a beautiful baby boy. He was the ideal baby, he barely cried, he would feed and then sleep four hours, feed then sleep four hours. I felt so blessed!

At three months old, he was hospitalized with pneumonia, he recovered well. As soon as I brought him home, he was different, he would cry constantly, he slept a total of three hours per 24 hour period. I put it down to him just getting over his illness. As the months went on the constant crying continued. If I held him, he cried more. I felt useless. 

At a year old I called my Health visitor. I begged her to come and see me and advise me. She spent an hour watching my son and asking me questions about him. She pointed out that he didn't respond to his name, didn't point, hadn't developed the pincer grip, barely smiled and spent his time just lining up his toy cars. It was my first child, I was very young and didn't know this was a problem. The Health visitor was lovely, she set up a care package, for someone to come out and give me tips on how to encourage my son to sleep better. Nothing worked.

The Health visitor referred my son to the child development centre, he was seen at 24 months old. I remember sitting in the doctor's room, with the Health visitor. My son had climbed onto the bed and was picking the paper sheet into tiny pieces. He was rocking, flapping and shouting "urgh urgh urgh" To me, this was just my son, he had always done this. I was asked hundreds of questions, my son was observed, two and a half hours later, the doctor said " your son has autism."

I remember replying " ok." I wasn't upset, or shocked, because I had never heard of autism before. I was 18 years old. The doctor didn't give me any information, apart from a leaflet. I left the building, called my mum and told her my son had autism. She told me not to worry, everything would be OK.

I was becoming confused, so later that day I called my Health visitor and asked exactly what autism was. She explained it was a lifelong social, emotional and communication disorder. She told me that my son may never talk, may have severe learning difficulties, she said he would always be in his own little world. I cried. I broke down and cried. I just imagined my perfect little boy being stuck in a two year old head for the rest of his life. I was scared. How would I cope? I was barely coping as it was on less than 3 hours sleep a night, how would I cope like this forever?

As the weeks went on, appointment letters were coming through the door, one after the other. I attended these appointments in a blur. First was speech therapy. After two sessions they discharged my son because he was too distressed at each appointment, they said to come back when he was older. He attended sensory therapy, after 3 sessions they said he was too hyperactive to take part, bring him back when he is older and might be calmer. It felt like everyone was giving up on my son. Well I wasn't about to. I managed to get him into a special needs nursery, I spent hours a day at home doing play therapy and sensory therapy and my own made up speech therapy. I vowed to myself that I would give him the best chance he deserved. 

A few years later I fell pregnant unexpectedly. I gave birth and had another "ideal" baby. My first born, had started to talk, I was so proud of him! I was that busy concentrating on trying to teach my son to talk,feed himself, and show the professionals that my son didn't need people giving up on him, he just needed extra help, that I  hadn't noticed my second born wasn't developing properly, he was 16 months old. He hadn't so much as babbled, he spent his time spinning around or rolling toys under his fingers, wasn't responding to his name. I called the Health visitor who made a referral to the CDC, at 23 months old he was also diagnosed with autism. 

This time, I knew what I was dealing with, I knew how to help my child. I wasn't upset this time, because I knew that it wasn't the end of the world, that my child would develop if given the attention and support he needed. So I set off again, this time teaching both how to talk. 

By the time my second child was 30 months old, he and my eldest child were in speech therapy. My eldest child was blossoming, my second child wasn't developing as quickly. I didn't fret though, he had plenty of time to blossom too. All that mattered was that they were both happy. And they were. My eldest was happy in a unit for children with autism, my second child I found out had severe learning difficulties as well as autism, he was given a space at a special needs school. Not long after he started I found myself unexpectedly pregnant again! ( me and birth control didn't work!) This time it was a girl. I paid close attention to her development, I was expecting her to develop like my sons, but she wasn't, she developed neuro typically. Hit all her milestones. At 15 months old, she woke up one morning and literally stopped talking/babbling, stopped eye contact, and just generally regressed. I just knew from that day she had autism. At 27 months old it was confirmed. I was scared. I was in shock, because it wasn't expected.

I was scared because now I am a single parent to three children with autism, but, do you know what? I wouldn't have it any other way. My children are my world, they make me laugh, they fill my heart with so much love it feels like it will burst! Yes, I am exhausted at times, but it's a small price to pay to see my children happy and well cared for. The people who said my eldest may not ever talk, were wrong, he is nearly 12 and has the language of a 7/8 year old. My second child is nonverbal, my youngest is saying some words. I will never give up on my beautiful, sweet children. 


**If you want to share your story, please email me at grapejellyonpizza@gmail.com.  As always, join us daily at the GJOP FB page.  

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