I have only ever written about Little’s speech delay once, which you can read about in my post Seeing The Sunshine Through The Rain. It was an emotional post to write. And although we are in a very different place now, I have a feeling this post will be too. It’s also going to be a long post, it is a long story. So if you are in for the duration, grab a cuppa!
Our first born child is a renowned chatterbox. He makes your head spin! He had a sickness bug the other day, and as I stood with him over the toilet rubbing his back, I marvelled at how he still managed to talk non stop between throwing up in the toilet! We noticed a difference in Little in the run up to his second birthday. He wasn’t really talking. And all though they always tell you not to compare your children, it’s hard not to. On top of not talking he was having horrendous tantrums. The kind that left me in an exhausted sobbing heap by the end.
We talked this through with the health visitor at his two year check at the end of March and we were referred to a speech therapist for an assessment. The assessment was in the May, and to be honest nothing really changed in that two months. Friends and family told us he was fine and we all develop at our own rates. I’m not sure I really knew what to expect at the assessment. I didn’t expect for my world to be turned on it’s head.
Within two minutes of being in the room the speech therapist started talking about autism, and how Little was showing some red flags. He wasn’t interested in talking, he wasn’t making eye contact, he wasn’t asking for help, and he didn’t always answer to his name. She was right. I was devastated. I know there are far worse things in the world than autism. I know there is a lot of misunderstanding surrounding autism. And I know there are parents out there fighting to get an autism diagnosis so their child can get the help and support they need. But right there and then, I was a mother being told there might be something wrong with her child that would affect them for the rest of their life.
In all honesty I was a mess. In the weeks that followed I cried so many tears. I was scared. I was angry. I felt guilty. I felt like I was grieving for a life my child may never have. In an effort to get some control back on my spiralling state I started to read as much as I could about autism, I wanted to understand. I wanted to be able to help my child. We agreed to see a development consultant who would be the one to refer us for a diagnosis if he felt it was autism. We also agreed to group therapy sessions for Little. The speech therapist gave us lots of games to practice to help him with his eye contact and encourage him to ask for help.
In the months that followed between appointments I found myself analysing everything he did. Some days I convinced myself it wasn’t autism, that some things could be explained as typical toddler behaviour. Other days I convinced myself it was. On really bad days I convinced myself that Big was autistic too and maybe myself. It was an emotional roller coaster and not one suited to an over thinker like myself.
In the July something changed with Little. His confidence suddenly grew and he was making eye contact without any encourgaement. He was answering to his name, had began to say simple words like “car” and “keys” and in the correct context. He would point or come and get us if he needed help with something. We called the speech therapist to chase up the dates for the group therapy and told them of the improvements he had made. They told us to bring him in again for another assessment.
The second assessment was in the August. It was with a different speech therapist. The one that would be running the group therapy sessions. I laid it all out. Little was an expressive little boy. He smiled, he frowned, he laughed. He worshipped his big brother and loved running around the school playground with the other kids. I saw no sensory problems. He was fine with noises, he was always dirty, I mean it is impossible to keep that kid clean. Eye contact was no longer a problem, and he was asking for help and answering to his name. He just wasn’t saying much, but had started to. I didn’t think he was autistic.
My gut was telling me that he wasn’t. My head was telling me that everything I read about autism didn’t relate to my little boy. My heart was of course telling me that he wasn’t. And I spent so much time analysing and making sure it wasn’t my heart I was hearing over everything else. That I wasn’t burying my head in the sand and willing for things to be ok when they weren’t. It’s very hard to be objective about your own children.
As is the sods laws of parenting, Little did not perform any of his new found skills at the second assessment. He didn’t say a single word. He refused to make eye contact with the therapist, and he got frustrated when she tried to play a game with him. Although I do feel the therapist could have been more in tune with his needs. For example, she got a car and track out and wanted him to say “Go” or make eye contact after she had said “ready steady”. This is a game we had played a lot at home and I knew he could do it no problem. The issue was Little loved cars and as soon as she got the car out he wanted to have a look at it and hold it. The therapist wouldn’t let him, so he wouldn’t play her game. I don’t understand why she couldn’t have let him hold it for a minute and then played the game. I’m sure he would have been far more co-operative! But then I am just his Mum. What do I know?!
Despite what Little was like at home the speech therapist said it was still likely to be autism. I asked her if a speech delay was ever not autism, and she told me I didn’t have to label it if I didn’t want to. It didn’t really answer my question and to be honest it made me not like her very much. We came away with the same outcome. We just needed to wait until December to see the consultant and January for the group therapy sessions.
In the months that followed, Little’s vocabulary increased. He started to put two words together, and he instigated communication. He would point out fire engines, and aeroplanes and birds. He started to enjoy me singing nursery rhymes to him which he had hated before. And as his vocabulary grew, his tantrums decreased. He thrived watching Mr Tumble and used signs to communicate when he couldn’t say the words.
I spent a lot of time worrying. I felt sick about the consultants appointment. And I still continued to analyse everything he did. We went to music festivals and theme parks and Little always coped with it fine. More than that, he loved it.
December came and we met with the consultant. He was so brilliant with Little. He spent a lot of time with him doing different things, and he explained everything he was doing to us. He listened to what we had to say. He talked with so much passion about his job and both myself and my husband were instantly at ease with him. We were honest about everything. We felt that this man would help us no matter what the outcome was. At the end of his assessment he told us that he was 100% sure Little wasn’t autistic. That he had known within two minutes that it wasn’t autism. He was very confident that it was just a speech delay, and that with time Little would catch up. He wanted to see us again in six months because Little was still so little, just to be sure that there were no other underlying causes for the delay. But he was sure there wouldn’t be.
We left that building crying happy tears and flooded with relief. Things were going to be ok. I could stop stressing and worrying. Stop with all the analysing. Just enjoy Little being little. We were walking on air.
The happiness was short lived. In January we began the group therapy sessions. Ran by the same therapist we had seen for the second assessment. There were four sessions lasting 45 minutes each, one every Friday in January. Those sessions felt like being under a microscope. Every move he made was analysed. At the end of the last session, which also happened to be my birthday, the speech therapist told us she disagreed with the consultant and she felt Little was autistic. I am not a confrontational person. I am not a rude person. But I am a parent and I wanted to understand. Every question I asked was met with a defensive and quite frankly rude reaction. This is a conversation I have played over and over in my head as I have tried to understand why someone who works with people on the autistic spectrum was so very black and white about everything;
Us “What signs of being autistic are you seeing?”
Therapist “Well I know you don’t want to hear it.”
Us “Well no, no parent wants to hear there is something wrong with their child that will affect them for the rest of their life. We just want to understand.”
Therapist “Well if you don’t want a label you don’t have to go down that route.”
Us “It’s not about not wanting a label, it’s about making sure it’s the right label to get him the help and support that he needs.”
We left being told that a speech therapist would visit him in playgroup. I found myself in tears again. What now? We’ve got one person telling us he is autistic, and one person telling us he isn’t. It felt like the speech therapist had made her mind up in back in July and wasn’t going to change it.
When we got her report through a month later it confirmed for me that I completely disagreed with her. The report gave no context to what was going on. For example in the first session she wrote that Little had no interest in taking part in the messy play. What she failed mention was that two minutes before the messy play Little had been pushed over my another child. He had come to me for some comfort, but when the messy play started the child that pushed him over was sat in the tray of rice crispies, and Little was wary of him so didn’t go near him. Little had also only started at Playgroup that same week so it was all very new to him.
Another comment was that after taking part in a picture exchange game Little was running around the room and ‘posturing’. To give this some context, the picture exchange game involved Little giving the therapist a picture of chocolate in exchange for some chocolate. It’s fair to say that Little mastered this game very quickly and ate a lot of chocolate. When they focused their attention on another child Little was dancing around the room. He was excited and full of sugar. Show me a child that sits still when they are excited!
And on the report went. Every example she gave I could explain in a different way by providing the context.
In the March we went to talk to his key workers at Playgroup. They were fully aware of everything that had been going on. To me so much was riding on their opinion. They were the ones who spent the most time with him besides us. They were the ones that saw him with his peers. And they were of the opinion that he showed no signs of autism. They had not had to employ and special measures to make him feel safe and secure in the environment. He was like any other child there and his delayed speech was not effecting him in getting attention when he needed it. I felt more convinced than ever that my instincts were right.
That was a year ago. Next week Little turns four. So much has changed in that year. He now talks in sentences. He sings songs. he asks questions. He tells me about his day. His pronunciation is often hard to understand but he will have therapy for that when he starts school in September. He has friends at playgroup and is meeting all his targets. He has been discharged from speech therapy and from the development consultant. He is taking giant leaps in the right direction.
It’s clear he is not Autistic. But I have this residual fear of someone suddenly saying he is. I worry about him starting school, but he has coped with everything so far, so I am sure I am being neurotic.
It feels like one hell of a journey we have been on.
I feel guilt. I feel guilty that so many parents are fighting for an autism diagnosis and I was fighting against it. I feel anger. I feel angry that the speech therapist wouldn’t listen to us and made me feel like I was burying my head in the sand. I feel sad. I feel sad that my memories of his early years will always be haunted with pain and worry. I feel relief. I feel so very relieved that our lives aren’t going to be ruled by a condition that the world doesn’t understand. I feel grateful. I feel grateful for the amazing things like Mr Tumble, who helped Little far more than speech therapy did. I feel happy. I feel pure happiness when I see him and how far he has come.
The positives to come out of our story is that I have learnt to trust my instincts so much more. No one knows your child like you do. We don’t take milestones forgranted and we really really celebrate them. I also know so much more about autism, and that can only be a good thing. Understanding, educating and raising awareness of autism so we can adapt our world to suit their needs and not the other way around is so important.
And if you are typing the question speech delay and autism: Do the two go hand in hand? Know that the answer isn’t always “Yes.”
Sometimes, all our children need is time.
Thank-you for sticking it through to the end of this very long post. If you want to read more about autism I urge you to read these fantastic blogs from brilliant bloggers who are doing an amazing job at raising awareness. I feel I have walked a very small way in their shoes, but want them to know that I am on the sidelines cheering them on for the rest of their journey.
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