My children have autism: I need therapy more than they do.


I remember the very first day I admitted to myself that my children were struggling. They were both 18 months old and neither of them were walking. One never gave eye contact not did he interact much and he had no language. The other could not crawl or roll or even pull herself up. Both relied on routine for everything!

 
I remember one Friday late afternoon making a call to my health visitor and leaving a tearful message on his answer phone.
Looking back that afternoon epitomises the entire point of this blog. Here was I in tears worried about my children while they were happy sitting on the couch watching TV.

 

They were happy…it was me who was sad.


As time went on and appointments started piling up for them both it became quickly apparent that I needed to do every bit as much as my children. Occupational therapists gave ME exercises to do with them, speech and language therapists sent ME on a course while the children were happy at home in their routine with babysitters. The paediatrician gave ME advice while only briefly examining my twins. Early intervention support relied on ME doing more with the children to ‘bring them on’. It felt clearly that I was to blame.

 

While my son scanned object after object across his eye line repetitively, happy doing his own thing, I was silently breaking my heart. When all the other children ran into nursery while my daughter needed carried in, I was the one who emotionally struggled.

 

When my non verbal, not toilet trained, highly delayed son started full time school years later he settled much quicker than I did. He assumed everyone would look after him while I knew otherwise. He had no awareness of the danger of getting into a taxi without mum (he hardly acknowledged who I was) nor any concept of what school was and just went with the flow. Meanwhile my anxiety rose to a whole new level knowing I was unable to know anything about his day, who he was with, what he had eaten or wether or not people were looking after my vulnerable baby.

 
I needed support to help me with that constant anxiety. 

 
When my son has extreme meltdowns lasting hours and he is unable to communicate why, that affects us both. The fact I now have an 8 year old who I still can not communicate with on any meaningful level has damaged me.

 
I need help to work through my feelings of failure. 

 
When I see other children riding bikes, playing with friends, going to dancing or any other of hundreds of ‘normal’ things both my children really struggle with my heart breaks.

 
I need people to understand that some times I need to mourn for the things my children will never achieve.

 
My body is carrying a heavy load. I am on full alert 24/7. I have professionals watching our every move, quick to point out if they feel my children’s struggles are down to my parenting. My mind is constantly alert thinking of our next appointment, the next thing I need to prepare my children for or the next person I need to chase up. After years that affects your body and your mind in ways you can not control.

 
I have had counselling and also have to take tablets to keep depression at bay. My thyroid is whacked and my blood pressure keeps rising. My adrenal glands are failing.

 
My doctors tell me to ‘rest’ but autism never rests. As a parent to two children with autism I can not afford to rest. There is no time off.

 
My children are generally happy. The world they live in is safe and predictable. I need to keep it that way to protect them. They need me. The reality is they always will.

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They are perfect the way they are. They don’t even see themselves as different. It is because I am NOT autistic that I see things differently. I see how they could be mistreated and abused. I see them struggling to get jobs. I see my son requiring support all his life and never living independently. I see their vulnerability. I see their lack of social understanding. I see their need for constant routine. I see their naivety.

 
They don’t need therapy to help them cope with any of that. But I do. 

I’m sorry I’m failing you my son

I’m doing my best son. Honestly.

I’m phoning, writing, applying for things that you might like or that might help you, searching the internet for anything that might encourage your development. You are known to social services, you are known to education, occupational health, your additional support needs nursery, the special school you are going to soon, the health visitor, your genetic support nurse, friends at church, the neighbours. But still I feel I am failing you my son.

I applied in February this year to get a carers assessment and an assessment of your needs completed by social work. I want to help you. It took months for anything to happen but finally the social services sent an occupational therapist out to the house to do an assessment. I know you have no idea who that was when she came son but I asked her to try and help. She came up with some real ideas to support you. She promised me so much son. She was going to get the steps outside painted at the edges so you see them better and don’t fall over and hurt yourself any more. She was going to get a small handrail on the inside stairs so you have support when trying to walk up them rather than crawling. She was going to look into getting something sorted at the windows so you don’t fall out them. Yes, son, I told her you love sitting up and standing up at them. She wasn’t impressed but I begged her to help.

But nothing has happened. The promises came to nothing. She failed us. I’m sorry I failed you my son. But I tried. I really thought they might help us.

Once we got allocated a social worker and they started the assessments I told her everything about you. I told her all about the fight I was in to get you the right school. I told her they wanted you to go to a school with stairs you could not climb, and that you could not cope with having lunch with 200 other children. But she couldn’t help. She didn’t really want to know. She said that fight was with education. They failed you too son. They refused our appeal and turned down our placing request for the local special school. I want you to know son that you now have a brilliant school to go to in August. I know you might never understand what happened but I fought and I fought for you my son. And with the help of strangers you and I might never ever meet we won. I know it will be tough on you having to travel 22 miles back and forth to school every day. I know it will make your day longer than you or I want, but I’m doing my best son. And the authority only have two special schools. The other one was full. This was the best I could do.

I know you are really struggling to communicate son. I have pushed and pushed for speech therapy. I have cried in their office. I have made so many calls to them. But still there is nothing for the 7 weeks school holiday. Apparently everyone needs a holiday they say. But you don’t get a holiday from your frustrations. And I don’t get a holiday from your head banging, screaming and crying. If we went private by the time anything was in place the summer would be over. I’m sorry I am failing you again my son. I’m doing the best I can. I have told them it isn’t good enough for you. But there is a system. That’s what they call it. I know that means nothing to you. You just want help. I do too.

I told the social worker you like to walk outside. I told her the bushes in the street are amazing to you. I told her you like to wander down the dual carriageway at the end of our street. She suggested strongly I need to stop you. She said I must watch you more. That what you are doing is dangerous. I told her I did know that but I only need to turn my back for a second and you are out. She suggested locking the doors and alarming them. She said you need to be a prisoner in your own home. I did tell her all children need fresh air. She just said that if I can’t watch you because I have your sister to watch too then you need strapped in your buggy. I know you hate that. I know that’s why you bite me when I put you in it. You don’t understand the danger of walking up and down a main road with two lanes of fast moving traffic in each direction. You just see we are hurting you and spoiling your fun. And you will just try doing it again the next time, and the time after that. And every opportunity you get. I need to keep you safe son. I’m sorry you might never understand that.

I told her you love sitting up at the window. I explained that you find a way to climb up them no matter what I do to stop you. I told her you now like to stand on the windowsills too. She didn’t look amused but it is very funny for you. I did tell her how funny you find it but she never really understood that. I wish I knew what you find funny too. Perhaps it is the people walking past, or the fun of the chase or the fact you get a different angle on the world. I don’t want to always spoil your fun. I know you have sensory needs that we need to meet. I know it relaxes you. But you really have no idea how stressed it makes me feel. You think it is fun that your window opens. Wow. How cool that you can get to feel fresh air and hear sounds louder from outside. The social worker told me yesterday that as your bedroom window is a fire escape we can’t lock it. And she said new windows cost too much for social services. I am sorry they see the cost of new windows as more than the value of your life son. I don’t make those rules. And apparently it is my fault for letting you climb up there. I don’t think they understand your autism.

In fact I know they don’t. Because I have cried and cried and cried for respite. The latest excuse is that you would have too much change with starting school soon. You would love respite son. They take you to fun places all on your own. You get undivided attention that I can’t give you because you have a twin sister at home. And the people that take you have energy that I don’t have. They get to sleep at night. Yes you would love respite. So would I. But they won’t give us it. I’ve failed you yet again. And I’ve failed your sister because she needs a break too.

I’m sorry that I don’t play with you at midnight and 3 o’clock in the morning when once again you have climbed up at the window or went searching for your favourite toys to chew. I wish I was a robot that didn’t need sleep so I could be there and be bright and energetic at all hours of the day and night like you are. I’m sorry fatigue and exhaustion make me shout at you sometimes. I feel like I am failing you but really I am doing the best I can.

I need to take you to hospital tomorrow. You have tumours that need to be checked. You won’t like it. Neither will I. They will ask me questions son and I wish you could help me answer them. They will want to know if you are in pain with your tumours. You squeal and cry a lot but are you in pain son? Or just frustrated? They will be feeling you to see if the tumours have grown. You might not like that. Please don’t bite them. Please. They will be checking for other side effects of your condition like scoliosis, eye problems, and cancer. You will like the bit where you get stripped off. Sadly we need to dress you again. It would be good if you didn’t poo when we do it this time!

Today your nursery had a sports day and graduation. I know you hated every minute of it. You cried and fought and got very upset. I don’t know why they made you do it. All I can say is that these places like putting events like this on and it isn’t about you. It’s about them.

It never seems to be about you son. But I am trying to make it about you. I am trying to stop the system from failing you. I am desperately trying to get you the help and services you need. But right now I feel I am failing you and I am sorry it seems like that.

So I am going to let the world see you having fun at the window. You don’t know the dangers. But why would you? You are only 4 and have classic autism, severe learning difficulties, global delay and neurofibromatosis type 1. The system should be helping you but they are failing you.

And I’m sorry I am failing you too. Hopefully one day you will understand I am doing everything I can. And I love you.