Raising Two Autistic Children and How It Has Affected My Weight

I have never been super model material and that hasn’t ever bothered me. Prior to having children I was a size 12 and my weight wasn’t anything I ever thought about.

I am not prepared to say what size clothes I wear now because I know I am over weight and now I think about it a lot!

At nine months pregnant with twins I weighted much less than I do now, ten years later. The years have not been kind to me that way sadly.

As a new mother my weight was the last thing on my mind. It went even lower on the list when I told the health visitor I had some concerns about my son’s development. At 20 months I took him to see a paediatrician.

That day the paediatrician first mentioned autism and I went home and ate chocolate…because we all know that HAS to make everything better don’t we?

I had secretly hoped my sons struggles with speech, his delay in reaching milestones, his need for routine, his lack of social skills and his continuing rocking was a ‘phase’ he would grow out of. I was struggling with him outside of the house(and inside too where he would scream for hours on end) so I slowly but surely stopped going to anything with him. No toddler groups to be embarrassed at with my screaming child, no rhyme time at the library to watch other kids his age singing when mine could not say a word, and certainly no church when he would never settle in crèche.

The isolation started to affect my weight.

If you are not going out and meeting people what does it matter what you look like? I coped with the isolation by making poor food and drink choices.

Neither of my children were great sleepers. My daughter would only sleep if nursed from the breast and my son could stay awake all night at 18 months and still have more energy that a Duracell battery!

The lack of sleep started to affect my weight.

When you are tired your whole body is lethargic. You haven’t got the energy to cook and wash up so calling a delivery from a take away felt so much easier. It seemed like one less stress to think about in the chaos of life with young twins who consumed me all day and night. Sleep deprivation also meant that if I did manage a supermarket shop I would always forget essentials out of exhaustion. It took less energy to open a can of fizzy juice to drink than to remember how to even make a cup of tea. I was that tired!

Then as the children started nursery speech and language therapists, early years workers and educational phycologists became involved. The thought of people coming into our lives and our home brought so much stress and anxiety that I would cry into my cup of tea while munching on a chocolate biscuit.

Stress started to affect my weight.

The stress of finding a nursery place able to meet the needs of a non verbal child in nappies at three who wasn’t yet walking. The stress of putting the children in transport when neither of them could say if they were being treated well. The stress of feeling like I was always being judged because my children were not like others would make me want to reach for cake and fizzy juice while the children were at nursery or school.

Outside of nursery or school I had no other child care. My son was still screaming at 6 and beyond and the children’s insistence on rigid routines meant I could never ever be away from them. Going to the bathroom caused my daughter to have a panic attack and my son to scream! Everyday was a repeat of the previous one and outside of school we never left the house. I felt I was letting my children down.

Guilt started to affect my weight.

I felt I must be to blame for my children’s struggles since I was their main carer. I would read about autism being genetic and cry myself to sleep. I would read about early intervention and courses and wonder if I was doing something wrong since my child was 7, then 8, now 9 and still not talking at all. I felt guilty asking the NHS for nappies for my child as if I was somehow stealing from them. I felt guilt I was unable to work and pay taxes. I felt guilt at not noticing the autism in my daughter until she too was diagnosed a week before her 5th birthday!

I coped with that guilt with more take always, hot chocolate and crisps.

Food became my comfort when my world was falling apart.

I lost my self esteem, self worth and pride.

It’s taken me years to accept my children’s autism. I have walked through the isolation, the lack of sleep, the stress and the guilt and though things are not without difficulties, I am in a much better place.

Then one day I realised: if I could accept my children’s autism then it was time to wake up and accept how overweight I really was and do something about it.

Now I am slowly trying to lose weight. It isn’t easy though as my children are just as autistic as they always have been. They still only accept me doing certain things, rely on rigid routines, require a very high level of personal care and still struggle with sleeping a lot. I still don’t have child care and we have an abundance of appointments.

But I am making better choices. I am exercising when I can and not ordering take always like I used to. Change isn’t something my children like and it was so easy to settle into our unhealthy rut and stay there.

But for the sake of my autistic children and for my own health I am now slowly taking control of my weight.

I don’t blame my children for my weight issue nor do I blame autism. It was MY reaction and MY choices combined with the social isolation, lack of sleep, stress and guilt that having autistic children brought that pushed me to seeking support in all the wrong places.

I know it’s not going to be easy but one thing having autistic children has taught me is that even when progress is slow it is so worthwhile.

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I Used To Worry About My Autistic Child’s Future Until I Met An Adult Just Like Her

All parents worry about their children: Will they make good healthy choices? What if they get hurt? Will they have friends? How will they cope with handling money? Will they be safe?

It’s standard parenting really to worry.

That worry is amplified if your child is autistic. You worry even more about them misunderstanding language, making friends, and being independent because they are more vulnerable and different to their peers, and because society isn’t yet as accepting and embracing of difference as it should be.

I worry about both my autistic children but for very different reasons.

My son is profoundly autistic. He is, however, likely to have the support he needs throughout his life because his needs and difficulties are very obvious to people. The fact he has no spoken language, he has significant medical issues and severe learning difficulties on top of his autism mean that my worries for him are more about will he carers look after him, will he be understood, will he be respected and so on.

With my daughter, who is also autistic, but who has no accompanying medical issues other than anxiety (which is huge and I would never underplay that), and certainly no learning difficulties, my worries are very different. I worry about people taking advantage of her when she is socially naive to their motives. I worry wether she would manage a work environment with her unseen and often misunderstood sensory difficulties. I worry that her communication difficulties and social anxiety will mean she is isolated and unsupported. I worry that her naturally caring nature and very tender heart would mean she is vulnerable to bullying and cruelty.

I try to never let her see my worries but they are always there. When she struggles with change at school on days like sports day or comes home in tears because she had been unwell and unable to tell anyone. When her anxiety is so high she has panic attacks and nose bleeds and I am powerless to make everything right.

She worries about everything and I worry about her.

Then I met Tom on a social media group. I say ‘met’ him but he was a stranger posting on a group both by commenting on posts relating to my daughter (and other posts too) and writing his own posts. Very quickly to us both it became obvious that Tom and my daughter had so much in common. Examples included little things like the fact:

1. They both preferred to sit on hard surfaces like the floor instead of traditional furniture like armchairs and sofas. Naomi spends hours a day, often all day, playing on the floor. It turned out Tom does that too but as an adult to relax in other ways like watching TV.

2. Naomi really struggles with needing personal space. She builds barricades out of toys to create circles around her that no-one can enter. Tom struggles with personal space at work in a similar way.

3. Naomi takes language literally timing me for example if I was to say ‘I will be back in a minute.’ Tom was struggling with the same thing and mentioned misunderstandings at work and with his family due to the same literal understanding of language.

4. I mentioned in one post that Naomi was terrified of flies, wasps, bees and any other small flying creatures. Tom was reminded of the time his parents told him he was so scared of bees he refused to get out the car.

5. Both Tom and my daughter would rock to self soothe.

I could go on but the resemblances continue to grow the more Tom posts about his life and the more he reads about my daughter.

Coming across an adult who is so like your child is incredible. It gives me hope when I once had worry, it excited me when I used to fear and it inspires me when I was once disheartened.

I know Tom isn’t my daughter, but with so many similarities I feel we were meant to meet to ease my worries. You see Tom is independent, he has a full-time job, he has friends, and though he struggles with isolation at times he never loses hope and he never stops trying. Of course he still has struggles but he did well educationally and he has achieved in so many ways. He lives the sort of life I hope my daughter might have one day but yet I worried wether it would happen.

Tom only found out he was autistic as an adult. My daughter was diagnosed aged 5. Tom doesn’t live in the same country either and his family life and dynamics are different. Yet the similarities are just enough to make me feel encouraged. What is even more important though is that hearing about Tom is helping Naomi.

While my daughter isn’t on social media yet I have been telling her about Tom. She is amazed at the similarities (have I mentioned Tom even shares her birthday?) and so encouraged to hear that while he may have some struggles (don’t we all, autistic or not?) he is achieving, happy and doing well.

She may never meet Tom but that doesn’t matter. We don’t have to meet people in person to be encouraged or inspired by them.

My daughter will one day soon be an autistic adult. Hearing about an adult just like her has been life changing for us both.

Thank you Tom.

I used to worry about my child’s future until I met an adult just like her.

If only every autistic child could meet an adult just like them too. Believe me when I say it really is life changing.