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. 

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20 thoughts on “My children have autism: I need therapy more than they do.

  1. As a Mum of two Autistic girls and recently diagnosed son I feel your pain. Whilst I celebrate the things they are special at, I worry so much about their vulnerability and how easily they could be taken advantage of and whether I am enough to help them!!

    Liked by 1 person

  2. Exactly how I feel. I am blessed to have a lovely happy healthy bot who just happens to have ASD, ADHD, motor skill issues, sensory overload, etc, etc, etc…. The list of diagnosis’s goes on….
    He’s happy.
    It’s me who worries and takes the stresses of appointments, and things that need to be done with and for him. It feels as if the stress/anxiety is multiplied by ten due to me being responsible for it all. 😔

    Liked by 1 person

  3. A great post, thank you for being honest and sharing. I have a little girl who has complex medical issues and your description of 24/7 stress hit the nail on the head. Big hugs to you. Sounds like you are doing an incredible job.

    Liked by 1 person

  4. thats exactly how i feel! ASD is so hard especially because people youve been close to all your life dont understand it . reading this is like a sigh of relief , its not just me x

    Liked by 1 person

  5. I’m absolutely astounded by this post and not in a good way. Or at least not in a comfortable way. As a Trainee SLT we are so often told to make sure interventions look for ways to support parents, but sometimes it’s hard to see how best to support parents especially seeing as so few of we trainees are parents ourselves. I hope to think of this post every time I’m asking for parents’ help. Also, I hope you have been told by every professional that we know you are doing the best. There’s no manual for how to be an excellent parent for TD children let alone those with needs, and we do want to help.

    Liked by 1 person

  6. My eldest 2 have been diagnosed with autism, my 3rd has traits and has been referred and my youngest will be assessed when he is about three. They are all very different but have lots of similarities. Very hard trying to gauge
    The stress levels of them all and they
    upset each other as well. Always exhausted emotionally and physically.
    You are not alone!!!!
    Karen

    Like

  7. You put into words so eloquently what many are feeling and just don’t know how to say. You have every right to feel worn out and depressed, but I hope you find some good local support for times when you need it most. It’s a rollercoaster indeed, and sometimes some of the highs can actually feel quite low too. But never doubt that it keeps on rolling, and hopefully the highs get higher. Sending hugs xx

    Liked by 1 person

  8. I totally agree with you. They do say that parents of children with autism can be more prone to depression than parents with other special needs. Everything always seems to me “2 steps forward, 1 step back”. It makes me feel quite low at times although I do have a few interests that help keep me sane. Sometimes it feels that even close family do not understand and are not able to help. I was prescribed anti-depressants at one time. However, for me I felt that I needed to find another mechanism to help me cope as my son will always be autistic. It is very difficult not grieving for the child that they will never be. But at times with my son there are some golden moments. I did find reaching out to a local support group helped me at that time. Even though I didn’t join – just being able to talk to someone who understood when I made that tearful phonecall helped me.

    Liked by 1 person

  9. I sit here in tears reading your powerful words. Yes, yes, and again yes. Thank you for making it clear just how hard it can be living with the knowledge that our children are missing out on so much. The specialists give us so many instructions and so much responsibility there are days when it feels impossible to keep up with it all and do right for our kids. That guilt on top of all the other strain makes everything else harder to bear.

    Liked by 1 person

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