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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The extra stress of being a full time carer at Christmas

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If you ask people what jobs never get time off at Christmas and the majority will list those in the emergency services or health service. These are vital services that we all expect to work through public holidays to ensure our health and safety at all times.

But among those working tirelessly on Christmas Day, Boxing Day and throughout the new year celebrations too are full time carers; unsung heroes who sacrifice their own holidays to care for the needs of others, often at little or even no pay.

Christmas for full time carers comes with so much extra stress as services they usually rely on throughout the year come to a halt for the festivities. When day care, special needs schools, home help and respite centres all have times of closure for staff to have annual leave the full time stay at home carer is the one left to pick up the pieces, work longer hours and ensure continuity for the person they care for.

Then you have the fact that pharmacies, GP surgeries, dentists, clinics and out patient appointments all cease for a few days too. For full time carers coping with loved ones with complex medical conditions this not only causes complications but extra worry. Out of hours call centres have often never heard of genetic conditions or have the training to deal with patients who perhaps are unable to communicate. Taking a person you care for who has complex medical and communication needs to an out of hours GP with little to no knowledge of their medical history brings risks and worries for a carer so they often care for someone at home when otherwise they would be able to access medical support. Getting a person who is wheelchair bound or who does not cope with new environments into a clinic they are unfamiliar with presents extra stress and anxiety for a carer who is perhaps already exhausted themselves.

Christmas comes with an expectation of giving to family and friends. For a carer who devotes their entire life to someone else this brings a huge challenge of finding time to do all that is expected as a friend, a mother or sister whilst juggling the continued needs of a loved one. There is only so many hours in a day and the pressure on carers to be everything to everyone can take it’s toll.

Carers are incredible people though. They take on the role of so many professionals without the pay or training. They do physiotherapy, speech therapy, play therapy and occupational therapy without realising. They provide stability of care, reliability of routine, love and attention that no other service or person could provide. They feed, dress, take care of personal needs and befriend some of the most vulnerable in our society at a time when these people are so often forgotten.

This Christmas Day thousands upon thousands of full time carers will be preparing specialist Christmas dinners for someone they love, who for many reasons, is unable to use cutlery or sit at the dinner table with family. They could be providing pain relief, ensuring oxygen is supplied properly or talking to a loved one as they come out of a seizure yet again. They could be changing nappies or pads, dressing wounds or unwrapping gifts for someone else who can not do it for themselves.

They do it out of love. We owe them our love and gratitude too. It may not be our loved one they are caring for right now but one day it could be.

I am one of those full time carers at Christmas and I know the extra stress that this time of year brings.

To all those caring this Christmas know that you too are cared for. I see the extra stress this time of year brings and I care.

I see you care.

Know that I care too.

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This post first appeared here

Who supports the parents?

imageAnother letter. Another meeting. You know, the ones where everyone and their dog meets to discuss YOUR child? Now don’t misunderstand me here: I am so grateful for professional input, I appreciate them taking the time to come and I value their opinions (mostly).

The thing is though, they are doing what they are paid to do. They come dressed for the occasion, prepared, fresh and professional. And I just can’t compete with that.

I know I am ultimately the ‘expert’ on my child, but I don’t always feel like that.

I come to the meetings a very different person to them. I am mostly harassed, sleep-deprived, emotional and ill-prepared. I have not had the liberty of having a relaxed breakfast or had 15 minutes to apply my make-up. I have not even have a minute to use the bathroom in peace!

The times are set to meet their schedules, not mine. While I know the challenges involved in getting so many people together in the same place at the same time, I also know there will have been emails flying around, telephone conversations and tweaking of times and days among themselves to find a point of agreement. None of which I will have been involved in yet I am expected to just be there.

And I always am. Because it is what we do as parents and because I know these things are important for my children.

And so the meeting will go on. Each person will say what they are doing to help and support my child and reports will be circulated. It may well be minuted and if I am lucky I may even get a copy. Then they go their separate ways, each back to their own office, or base, or classroom and proceed with their day.

While I go home to cope with the everyday demands of two special needs children. Whilst in school my child appears to be well supported I wonder, not for the first time, about who supports the parents?

We are the ones dealing with the challenging behaviour, the meltdowns, the endless screaming, the not sleeping, the sensory difficulties and the food refusals. We are the ones who do the personal care, fight to get the uniform on and battle to get them to school. When the holidays come we are left alone and everyone at the meeting carries on with their day.

We are the ones fighting with schools, dealing with transport issues, and filling in forms. We are the bottom line and the most important people in it all. Our opinions matter hugely, our insight is important and our knowledge crucial. We should be valued, respected and acknowledged. We are the true professionals, the best experts, and have the most invested in our child. But we also deal with the reality so much more than anyone else.

I love that so many people support my children. But I do wonder sometimes when I watch other families going through the same thing as I do, when I hear so many parents of special needs children struggling with depression or crumbling with the stress of it all;

Who, in all this, is supporting the parents?

When other people get involved

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The uniforms are bought, the bags packed, and the children prepared to once again start a new term at school. It is with great anxiety and fear that once again I release my children into the hands of others to be looked after and educated for six hours a day, five days a week.

For the last seven and a half weeks I have pretty much been with them both 24/7 and even though that has brought pressure and stress at times, it has also been a relief to not have to deal with other people and schools for a while.

Now that is all about to end.

Once again other people are about to get involved in my life.

When other people get involved…

1. It is easy to feel like a failure.
While I know my children have thrived this summer under my care there will be teachers and therapists within my children’s schools who will only see the fact that their development has not been stretched perhaps as much as the would have liked, or they have not been challenged educationally or encouraged to socialise with others their own age enough.
Then there is the fact other families will stand in the school playground boasting of holidays abroad, play dates with friends and new skills their children mastered over the summer which my children may never achieve.
Being around other children the same age as mine and seeing what they can do and say has a way of making me feel like an utter failure within minutes, even if unintended.

2. Everything suddenly becomes a big stress.
In summer we ate when we were hungry, if we wanted to have pizza for lunch instead of dinner we did. We ate out now and again, we took packed lunches and went out for day trips and we had fish and chips at the end of a busy day. But now my children are returning to school where one barely eats and drinks and now food will become a huge stress again.
Now the professionals are back involved there is also an expectation to ‘move the children on’ in areas they have become stuck at and we are expected to follow “proven” methods or be criticised even when these may not be right for our child. Stress!

3. The pressure to perform becomes huge.
Did anyone care if my son wore an un-ironed t-shirt last week? Returning to school brings with it a pressure to have children dressed smartly, in uniform, and arriving on time, having eaten healthily and slept well. All of those things are major challenges for my children with sleep difficulties, sensory issues, limited diets and no understanding of time. Forgetting homework, leaving the packed lunch at home or not remembering PE kit has you instantly marked down as a terrible mother and raises my daughters anxiety to a level that makes her ill. There is pressure to keep up with the other children in the class and do weekly activities too. Having other people involved in caring for your children puts so much pressure on us all.

4. I lose knowledge that is vital to communicate with my children.
My son is non verbal and both my children have social and communication difficulties (autism). Being with them all summer has meant we have learnt to understand each other. My son would only need to find a photograph to show me and I would immediately know what he was trying to communicate because I was there with him and I know what he enjoyed. When other people get involved I lose that vital connection and no school diary or ten second talker can make up for the fact I am not with my child and therefore I have no knowledge of what he is trying to communicate. He may have heard a song at school he wants to hear again and I am expected to just ‘know’ and because I don’t we have hours of self harming, frustration and upset all round.
Neither of my children can properly communicate to others when they are hurt or where. Neither will adequately communicate when personal needs require to be met or that a food may make them feel sick. This is the bit I hate: that not knowing and having missing pieces that they can not explain to me and I have no means of working out.

I know there are some advantages of having other people involved though. It is important my children become more flexible and less rigid in insisting only I can meet their needs. They also do need to learn independence even if they will require support throughout their life. There is also the fact that having some professional involvement can actually help by bringing new ideas, support me and help access resources that can make a difference. We just need to learn to communicate, trust and work together.

I need to let go. After almost eight weeks with my children that is hard. But for my children’s sake and my own it really is important…

To let other people get involved.

They never told me THAT at diagnosis!

imageThey never told me THAT at diagnosis!

So I am a ‘special needs mum’, more by accident than choice. I have six-year-old twins who have an array of medical and developmental diagnosis. There have been a number of occasions when we have sat down with doctors, specialists and psychologists to receive spoken, and later written, diagnosis and each time brings a huge array of different emotions. But over time you realise that while professionals may give you a ‘name’ for what your child is experiencing there is so much else they DON’T tell you. Here are a few things no-one told me when my children were diagnosed:

1. This won’t just affect your child. It will affect the entire family.
Having a child with a genetic condition, or a developmental disability or who requires on-going support, puts a huge strain on everyone in the family. Parents have to walk through their own private journey to come to terms with, and hopefully eventually accept, that life is not going to be quite how they planned it. And siblings have to cope with perhaps not getting the same attention they need or facing seeing their brother or sister go through things no child should ever have to. Grandparents, uncles, aunts, and extended family members don’t always know what to say or how to support and so sometimes appear to criticise or upset when perhaps they never intended. It is like dropping a pebble in the ocean and seeing it ripple out way beyond where it first dropped. No-one told me that at diagnosis. I wish they had. I may have been more patient with family if they had.

2. This will put a huge strain on your relationships.
Even couples who are incredibly close and resilient struggle when you add in the added complication of a child with a diagnosis. Blame, jealousy of the child’s needs, extra financial pressure and lack of sleep, make it so difficult to maintain a healthy relationship on top of the caring responsibilities of a special needs child. Then there is the strain put on friendships when you can’t make as many social events or you cancel things at short notice. Social gatherings such as weddings, parties, and christening become quite a burden to a family who can not readily get a babysitter for a child with additional needs. I wasn’t prepared for how a diagnosis would affect my marriage and my friendships. I wish someone had told me. I may have been more understanding if they had.

3. This will stretch your finances beyond recognition.
Raising children is expensive. Raising a child with any sort of diagnosis is even more expensive. Hospital visits cost not only in travel and parking costs but often in food, treats for your brave soldier and perhaps time off work. For many families giving up work to become a full-time carer is the only option and that brings with it a drop in income that never seems to get replaced. Private therapies cost and toys with the words ‘special needs’ in front seem to double or triple in price. Extra heating to keep a sick child warm, ongoing clinic and therapy appointments, carers, equipment, specialist clothing, continence products and replacing broken communication devices all put a huge strain on the financial situation of a family. I had no idea about this when we first had a diagnosis. I wish I had known. I may have been more prepared for it if I had.

4. Everyone you speak to will now be an expert.
When I had no ‘name’ for my children’s challenges people were happy to listen, offer a hug and at the most perhaps suggest a few things they thought might help. But mostly people just felt sorry for me or my children. But once we received that all important diagnosis (especially for some reason when one of the diagnosis was autism) everyone seemed to suddenly become an expert! We needed to urgently start this therapy or that therapy! It was because we had the kids vaccinated! It was the stuff we fed them! They knew someone who had the same thing and they took this vitamin or read this book and now their child is cured. And so on. We were judged, and corrected, and criticised for everything from the moment we mentioned the diagnosis! No-one told me that at diagnosis! I wish they had. I might have developed a thicker skin quicker if they had.

5. Diagnosis is the start of a journey not the completion of one.
When you have spent months and years fighting to get your children’s needs recognised and acknowledged, when you have been on waiting lists for so long you can’t even remember the person’s name who referred you in the first place, when you have put your heart and strength and fight into this one thing, you can easily see the diagnosis as the end of a very long journey. It is three years this month since we were told my son had classic autism, global developmental delay and severe learning difficulties. Three years on and I am still fighting his corner, still trying to get people to listen, and still pushing for more support. I naively thought everything would ‘fall into place’ after we had a diagnosis. Sadly that never happened and I have discovered it rarely does. They never told me that at diagnosis. I wish they had. I would have saved some of my strength and stamina if I had known.

6. There will be days or years later you will still be sad.
I expected to cry the day we were given the diagnosis. What I didn’t expect is that years later there would still be days I would look at my child and cry. That does not mean I am not a happy person. My children fill me with pride daily. They are achieving in their own way all the time. But some days I watch them struggle. Or see something another child does easily that they have yet to master (like talking or waving goodbye) and the tears come easy. And I have realised I am not alone. Some days I relive that diagnosis day and it stabs me in the chest as much as it did the first day I heard it. I don’t live there anymore but I still hurt. And that is ok. It’s just no-one told me that on diagnosis day. I would have kept some tissues with me had I known.

7. Diagnosis doesn’t change your child. Love does.
I looked at my child differently the day they were diagnosed. I saw a child struggling with medical issues or developmental issues and I worried for the future. I saw a life mapped out for them I never planned nor wanted and that broke my heart. I thought the diagnosis would somehow define them. But years later I realise that has not happened. As time has gone on people see my children simply for who they are not the name given to their communication difficulties or social struggles or medical challenges. When I introduce my children I just call them by name. That is who they are. That is who they will always be. They never told me THAT at diagnosis. Maybe if they had I would have realised it would all be ok.

They gave a name that day for the collection of difficulties my child presented with. But that was all. A name. A word. Something I could learn more about to help them. They took my breath away for a moment. But they never ever took my child.

My children are awesome. But they never told me THAT on diagnosis day either. That is ok though. I tell them that everyday anyway!
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When everyone wants a piece of you

Another day. Another appointment. Another night of being woken through the night. More phone calls. More screaming. More bodily waste to clean up. More pressure. Never-ending stress.

Every parent gets stressed. Everyone needs a break at times from the 24-7 demands of raising children. But sometimes the added pressure of having children with additional support needs just becomes overwhelming when the days and nights become one, the paperwork piles up and everyone wants a piece of you.

What do you do when a professional calls you and you need to take the call yet your child needs your urgent attention at the same time (I could list any number of things they could be doing here like smearing faeces, climbing in a bath of water fully clothed, feeding the fish a tub of sudacream, eating frozen food from the freezer or escaping out of a window or door)? What do you do when you HAVE to find the time to complete urgent paperwork but your eyes can barely stay open and your mind can not focus due to exhaustion? How do you explain to a child with very limited understanding that their routine needs to change to go to yet another hospital or clinic appointment? What do you do when one professional says one thing and another disagrees and you are caught in the middle? How do you cope when mealtimes make you cry because your child just won’t eat and the other one just won’t stop eating? How do you remain at peace when your child comes home from school wearing clothes for the opposite sex because yet again he has gone through four pairs of trousers in a school day even whilst wearing nappies?

Everyone wants a piece of me.

I am expected to turn up at meetings and act professionally even when at times my heart is breaking. Crying is meant to be reserved for the privacy of your own home and only makes professionals question your mental stability if seen in public.

I am expected to follow through programmes designed by professionals who think they know my child better than me and who think I have nothing to do other than run with their latest plan.

I am expected to answer phone calls and emails in a timely, professional manner as if working in an office environment while the washing machine is spinning in the background, the children have technology at full blast (what other volume is there?) and the window cleaner is knocking my door asking for money.

I am expected to turn up to the right appointment, at the right day and time, with the right child, focussed, prepared and calm with a child who is alert, receptive and willing to participate in whatever therapy they are having today. And all this with a smile on my face and an enthusiasm for the programme.

I am expected to do homework with my children, take them to activities to ‘broaden their horizons and stimulate their interests’, give them a healthy diet and exercise, nurture their talents and spend quality time with them, when in reality we spend our evenings making chicken nuggets for tea again, watching the same programme on TV for the fiftieth time and coping with screaming children, toys and technology being thrown across the room and being physically attacked because I dared to run them a bath!

Schools expect me to jump at the first mention of ‘parent involvement’, hospitals expect me to fly my children to appointments (well they certainly don’t expect me to park given the lack of spaces they provide!), social workers expect to come to a house that is well run, clean, yet homely and comfortable, and my children need me to hold them, love them and help them all the time.

Yesterday I had one meal. It was one of those days. And the fact is I am not alone. There are so many parents in the same situation. Living with stress that is incredibly high, balancing meetings, appointments, therapies, professionals, children and the demands of running a home whist caring 24/7. Because despite the volume of people involved with my children it will still be me tonight who cooks them both tea, has clean clothes for them to wear to school tomorrow, reads them the bedtime story and kisses them goodnight. It will still be me who lies with them through the night while they cough or cry or scream.

It is me who knows them, protects them, loves them.

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Everyone wants a piece of me. But these two have a piece that no-one else can ever have. They have my heart. Every other piece of me can just wait while I take a moment to hold them. The phone can keep ringing, the post can wait a moment and the emails can stay unread just a little while longer. Whoever else wants or needs me these two always come first.

Pass it along…and leave it to mum

imageWhat qualifications did I need to become a mum? Very little, if any.

Teachers study for years, as do speech therapists, occupational therapists, physiotherapists, social workers and psychologists.

I am just a mum. I don’t mean that in any way to put down what I do. But my role is very different to the specialists named above. My job is to love, nurture, support, encourage and guide my children to become the best that they can be in life.

For my children with additional support needs that means I will be changing nappies much longer than average, still teaching basic sounds and numbers long after others, and spending that bit longer supporting my children (possibly way into adulthood). That I can, and am happy, to do. I will happily spend my evenings singing nursery rhymes, playing board games and doing homework. I have no issue with cooking, cleaning, washing and other seemingly mundane house hold chores.That is what being a parent entails.

But increasingly I feel I am being asked to be way more than a parent to my children.

As financial pressures increase upon the services my children depend upon to support them, there is a current trend of ‘pass it along’. Basically for so many professionals their time with my child is very restricted. Their roles are goal oriented where after a few sessions it is expected they can record progress and show they are making a difference. Then they show me how to do what they have started and move on.

So for example, the speech therapist may visit and introduce some basic visuals. He or she may check my son or daughter appears to understand, then proceed to give me a quick demonstration and hey presto…they vanish off the scene leaving me to do their job! They have little choice really. They have referrals coming out their ears and fewer resources at their disposal. So ‘pass it along and leave it to mum’ is the only way for them to survive.

So now I am a parent and suddenly a speech therapist too. That adds a bit of pressure.

My daughter was finally seen by a physiotherapist this week. She was lovely and very thorough. We now have a much clearer understanding of some of my daughter’s physical difficulties. More referrals will now be made (the hospitals must think we have a season ticket!). When I asked specifically where we go from here I was told that hopefully someone can show the school some exercises and we will also be sent leaflets full of things to do at home too. No time to come and teach me. It is expected I will be able to work it out myself, without all their years of specialist training. No time, no resources, not enough staff. Pass it on; discharge.

So now I am a parent, a speech therapist and now a physiotherapist too? I can sense the washing pile mounting up more and more!

The occupational therapist came this week too. Her case load is more than some schools have on their entire role! There was insufficient time (as usual) to complete the paperwork she wanted to do that day so a pile was left for me to complete as soon as possible. And of course she left us with more practical ideas to support the children. No time to teach but ‘the sheets will explain’…where have I heard that before?

Now I am a parent, a speech therapist, a physiotherapist, and an occupational therapist!

Do I really need to tell you what sort of thing the psychologist meeting was about? I think you get the picture!

Of course I could easily chose just to default and be ‘simply’ mum. But the reason my children were referred and accepted by all these professionals is because there was a need for their services. Their input could apparently ‘add value’ to my children’s lives. They could apparently help us.

So while I am left with not only the raw emotions of finding out my child has yet more physical issues and needs, and passed to yet more health professionals and departments, I am also forced to take on roles I am neither qualified or trained to do.

And when it all unravels and my child still can’t talk or use visuals in years to come, or my daughter is still unable to carry out certain physical tasks or is still crippled by anxiety who will accept responsibility?

They will say the have done their best. They did exactly what the system expected them to do. They passed it along…and left it with mum.

Meanwhile poor mum has little time left just to be a mum. She is far too busy trying to be the professional needed for her children.

It’s just she has no-one left to pass it all along to.

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