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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When you don’t feel ‘enough’ as a special needs parent

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By 4pm the panic was setting in. Later afternoon is the time it mostly hits. I begin to think about dinner, cleaning up, baths, stories, and hopefully bedtime, and I realise yet another day has passed and things haven’t changed. When my children eventually settle to sleep my mind will run through all the missed opportunities, all the forms I never quite had time to fill in and all the moments I left my children to entertain themselves. Did I do enough today to help them? Did I do any of the exercises the physiotherapist told me I should? Did I ensure my daughter had her insoles in to correct the turn in her feet? Did I teach them anything or encourage any social skills?

Even if I did something, was it enough?

If I read my children’s speech reports I am reminded of all the times today I forgot to use pictures to reinforce understanding, and why do I suddenly remember all about makaton signs the second my child has fallen asleep?
Then I remind myself I am not a speech and language therapist. Even more important I am not MY CHILD’S speech and language therapist. I am his mum. I can never be ‘enough’ for his speech and language development as that is not my speciality. So I could do more! What parent can say they honestly do all the exercises with their speech delayed child all the time?

If I read my child’s physiotherapy report my heart sinks. Once again another day has passed and we never did those leg strengthening exercises she hates, or invented games that required rolling. When I was busy cooking I noticed she was sitting in that ‘W’ shape again and I left her too it. I never did enough. Actually I don’t think I have ever done enough to satisfy her physical needs. I feel guilt about that daily but then I am sure all parents feel like this sometimes? Maybe it is just me?

I left my non verbal son to watch videos on his iPad today. Not the most ideal thing according to therapists I know, but sometimes I just can’t do it all. I even put my two autistic children in the car and went somewhere today without first reading them a social story about it, showing visuals and going through the route on google street maps! Oh dear, no brownie points for me today!

The fact is they survived. I survived. We lived to see another day, and yes I will always feel guilt at what we didn’t do in terms of therapy or research or exercises, but in many other ways I was more than enough for my children today.

They had more than enough of my time.
They had more than enough to eat and drink.
They have more than enough toys and technology.
They have more than enough clothes to wear.
They have more than enough access to medical and educational support.
They have more than enough love.

Fellow special needs mum, remember this: never let any professional make you feel less than enough. Never let your child’s struggles make you feel less than as a parent. You ARE enough! Your love, encouragement, support and dedication WILL be enough. Did you make it through another day? You were enough today and you will be enough tomorrow.

Never ever forget that!

This post first appeared here.

 

 

 

Please stop blaming the parents!

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It starts from the minute you get a positive pregnancy test. Somehow those two blue lines seem to propel you into a world where everyone feels they have a right to judge you, watch you, give you advice and generally make you feel like you are doing everything wrong.

“You really shouldn’t be doing that in your condition”
“I’ve heard that isn’t something you should eat when pregnant”
“Oh, don’t forget to take such and such a vitamin. I took that when I was expecting wee Johnny and look how great he is doing now!”
And so on…

In fact you could even say before you finally fall pregnant that it starts. When we were trying for a baby (it took almost 10 years before I had the twins) everyone seemed to automatically think I was to blame! I wasn’t eating the right food, I just needed to take a holiday, I needed to stress a lot less, or just ‘forget about it and it will happen’ or even the comments about my personal medical life and private life at home. Although I know most people were only trying to help it felt like I was being judged and blamed for my inability to conceive.

Then there’s the pressure to breast feed, wean a certain way at a certain time, only use certain products for your baby, only let them watch a certain amount of TV, sing enough songs to them, take them swimming every week and so on.

So when my children struggled to reach milestones when professionals said they should it all started again. Was I encouraging them enough? Were they put in walkers for too long, or not enough? Did I have push along toys to help them walk? Was I reading to them, singing to them and spending enough time with them? Because it clearly had to be my fault that these milestones were not being reached when books clearly stated babies should be doing certain things at certain times. And so parents, doing everything they can to help and support their children, start feeling guilty very early on that somehow they are failing their children.

At what point do professionals start realising that the child needs help? Or start looking into the child’s development to see if there are any signs of a disability or something abnormal? Even when it seems obvious a child is showing signs of a developmental delay or autism or perhaps a genetic disorder the system still seems set on blaming the parents.

I have been in the system long enough to see now that the first thing all the professionals do is look to the parents. Speech therapists send parents on courses, early years workers come to the house to show and teach parents how to interact with their child, paediatricians suggest ways to help them sleep or tell you to try toilet training them. Psychologists tell you about the importance of boundaries and rewarding good behaviour. Sometimes it can be so patronising.

Now don’t get me wrong, I have learnt some important things from many of the courses I have been on and made friends with others in similar situations too. I am enjoying learning to sign songs to my son in makaton to help him understand them better and it is always good to be reminded of proven parenting strategies. But that does not mean that the difficulties my child has are down to my bad parenting. I get it wrong some days, what parent doesn’t, but does that mean I am to blame for my child not being able to talk? Or not being able to jump or climb?

While I do understand there are a small percentage of children with difficulties caused directly from harm inflicted whilst in the womb or parents not able to look after their children these are very much in the minority. The vast majority of parents I know whose children have any sort of developmental delay, or autism, or genetic conditions or additional needs in any way do a huge amount for their children, often devoting all their money and time to support and help them. Far from being blamed for their difficulties they can take credit for their achievements against all odds. I know parents who spent their days fighting for services to support their children and nights being up with a child who does not sleep. Parents who have established and run charities to support other parents and families to give children opportunities to succeed despite their challenges. Parents who spend hours making visual timetables, laminating and printing visuals for their child, attending workshops and training courses to learn more about their child’s condition to support them better. Many are still fighting against the constant guilt placed on them for giving their child inoculations, or working as well as being a parent, or for not having the money to pay for private services or the best school. Some are spending years trying to get their child diagnosed when all professionals want to see is poor parenting when the child is actually struggling with a condition that affects their behaviour, understanding or ability. These parents are far more of the norm.

So when my child is screaming in public and others are looking at me and judging me because I physically lifted and carried a five year old who ‘ought by now to know to behave in public’ or people stare at me because he is still in a buggy. Or they read yet another media article that says autism and other such conditions are just an excuse for bad parenting or a modern phenomen. Or my child has a bad day at school and the diary suggests ‘is there anything going on at home we should know about?’ It just adds to the guilt and the blame. And that isn’t helping me or my child.

So please media, professionals, schools, and society look at how amazing parents are, especially parents dealing with children and adults who have extra needs. Yes we may get it wrong some days, because we are only human like you. But we are trying, learning, supporting and doing the best we can for our children. We don’t need guilt added into our already difficult lives.

Please, stop blaming the parents!

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