Why I Struggle When My Special Needs Child Gets ‘Star of the Week’

So my 9 year old son came home from school on Friday with a certificate and photograph in his bag. There was no eagerness to show me and no message in his school diary; it was just there. Of course I am proud of him and told him so and absolutely it will be displayed on his bedroom wall to honour his achievements like his sisters are in her room. That is never in doubt. However, I have to be honest and say I really struggle when my son gets ‘star of the week’ and here is why:

1. It reminds me just how far behind he is academically.

It’s a sobering thought that my son has been at school five and a half years and is still working at pre-school levels in many subjects. The very fact he still has no idea that star of the week is any sort of aspirational incentive to even aim for says it all. He isn’t being modest or shy in not showing me his certificate; he honestly still doesn’t get the whole social aspect of celebrating achievement in any way. His twin sister commented on his award saying ‘well done Isaac but…’ and she went on to ask why he is still so far behind her. That’s hard. You see I live with my child daily and I know he struggles but seeing it on paper seems to somehow make it raw. It hurts. I am proud of my son but sad that he is behind so much. I don’t think anyone wants their child to be 7 or so years behind their peers in any way.

2. It makes me scared for the future.

I try not to think of the future. I live everyday and enjoy the moment but wisdom would tell me that I do need to plan for the future too. I shared my sons achievement on social media and today someone asked me in person what happens to children like my son when they finish education. The reality is my son will likely not be suitable for college and academically will never reach the level required for university. Employment is pretty unlikely too so our current options include him living at home and attending day care services. That’s not what I planned for my child when I conceived him and carried him for nine months, and although I do need to be mentally prepared for this seeing his star of the week award just feels like his future is all planned out and that is scary. His options are limited and seeing his academic ability on a laminated sheet makes that a stark reality. I won’t lie, that is hard to accept.

3. It makes me feel he is being defined by his ability to learn.

When I think of my child I think of am energetic, fun loving, teddy chewing, mischievous little brown eyed boy who does the best squeezy hugs and who loves his food. I think of the child who has incredible gifts in communication despite having no spoken language. I get so much joy from singing along to the songs he plays on his iPad and going to lifts with him. I see a child who gets so excited every time Bing Bunny comes on the TV that he bounces in the armchair he is sitting in. I see a child who could go hundreds of miles to places on google street map even though he has significant visual impairment. I don’t see his lack of ability to read or write or speak as an issue and none of those difficulties define him. So when I see his star of the week award I hope that this is not just how society sees my child either.

My son will always struggle with some things. Professionals and medical specialists have told me it is unlikely my son will ever speak to me. Education have told me he won’t ever attend a mainstream school and college or further education is unlikely. It’s a very sobering thought but with that comes my absolute determination that my son should never ever be defined by his struggles.

So I will stick his award on his bedroom wall and smile. It’s great he has been recognised. It’s great he is making progress but I never forget that for everyone of us life is much more than our ability to learn or how far we go in education.

I struggle when my son gets star of the week because his ability to achieve should never be limited to traditional education. I am raising a remarkable, brave and wonderful child who is breaking the mould in life. He is a star in so many more ways than just trying to write the digit 2. One of the many reasons I write about him is to help others see beyond his academically ability (or lack of) so I will stick that award up and get back to celebrating my son in every other way I do daily.

Don’t ever let educational achievement define anyone. We are much more than our ability to learn.

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Six things you may not know about my child with developmental delay

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The first diagnosis my son ever had was ‘global developmental delay’ and like so many I understood this to mean he was a little bit behind his peers but would probably, in time and with support, be just fine.

He was only one year old when we were told he was struggling and not meeting key milestones like sitting up unaided, making attempts at speech and playing with toys.

I was in denial. I was sad.

I stopped taking him places (probably one of the worst things I could have done in hindsight) and I ploughed through each day willing him to learn skills others mastered with ease. I blamed myself. I cried myself to sleep at night. I sang to him, read to him and played with him for hours, but very little changed.
As years went on we collected diagnosis like a stamp collector collects stamps.

The term developmental delay is now slowly being replaced by his doctors to ‘learning difficulties’and I have come to accept now that he never will catch up with others.

Over the last seven years I have found so few people have any understanding of what developmental delay actually means. It is such a huge, all encompassing, spectrum ranging from children with mild delays in some areas to children of school age still unable to weight bear or even support their own head. It covers children who are behind in reading and writing, to children who are fully wheelchair bound and unable to speak. It can be a stand alone diagnosis or the effect of other more complex issues like cerebral palsy, autism, Down’s syndrome and many complex genetic conditions (some we have yet to name!)

Though every child and situation is different, here are a few facts about developmental delay as it applies to my son:

1. Some children DO catch up, other’s don’t.

My beautiful son, will forever be developing at their own unique pace and time and will always need support right into adult life.

2. As a child gets older the term developmental delay is likely to disappear and instead be replaced by some form of learning difficulty or perhaps simply referred to in terms of severity of other conditions such as severe autism.

This does NOT mean the child no longer has delays just that the way of describing those delays has changed.

3. Although my son’s development is way behind others there is so much about him that will always be ‘age appropriate’.

For example he started eating solid food at the exact same time as other babies at around six month old. He lost his first tooth at aged 5 and he wears clothes for his chronological age, not his developmental age. His body continues to grow and develop even if his mind and skills are years younger. He will still go through puberty as he grows and he eats just as much as any other child his age.

4. Developmental delay is often unseen and therefore can often be classed as an invisible disability.

This does not make it any less difficult for the child or adult or the carers. If you see a much older child still being supervised in a toilet or not talking when you speak to them please think about the fact they may look ok but they could be struggling to understand or communicate.

5. Milestones are worth celebrating whatever age they happen.

Child development has stages that almost every child goes through regardless of when it happens. A child with developmental delay will go through the same stages just at a different time. For example they learn to sit, then crawl, then stand, then walk. Or they learn to make noise, then babble then the first word. If your five year old is babbling for the first time this is wonderful because at some point they may change that babble to a word. If your four year old can stand unaided then one day soon they may learn to walk.

6. Developmental delay does not define anyone.

Society may put pressure on people to succeed and compete but that does not mean that we have to. Life is not about the destination but about the journey. For some they are just enjoying the journey at a slower pace and that is every bit as wonderful as those who choose to run.

As Martin Luther King Jn says:
“If you can’t fly, then run. If you can’t run, then walk. If you can’t walk, then crawl, but whatever you do you have to keep moving forward.”

That, I can assure you, is what my son is doing. If he can move forward then I can too. However long this journey takes we are enjoying it together.

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The ‘R’ word I dread as a special needs parent

I don’t use the word dread lightly. This word fills me with fear and apprehension. Ever time I hear it is makes me feel physically sick. To hear this word spoken over any person, child or adult, is utterly heartbreaking. Yet parents of special needs children, especially those of children with progressive conditions affecting cognitive development, hear it often.

Regression.

I dread that word. It is a sad word. It signifies loss, going backwards, the lack of ability to do something the person was able to do before. And it is very, very real. And at times it is scary.

Every now and again I get accused of over sharing. Some people feel I video and photograph and talk about my children perhaps more than I should. But one of the reasons I do that is because of this dreaded ‘R’ word. It is because I NEED to remind myself my child was able to do something at some point because today he has no idea about it once again.

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Memories are what keeps me going.

So all children regress sometimes they say. That is very true. Stress, trauma, neglect, illness and change in family circumstances can all contribute to moments when any child can regress. It is common for a toddler, for example, to ‘forget’ the skill of toilet training when a younger baby is born. Or for a young child to take a few first steps only to lose nerve and go back to crawling for a while. It is widely understood that during illness or even long school holidays children can forget reading skills or physical skills they had long ago mastered. I get that. This is temporary regression. And, as hard as that is to live with, almost all children regain the previous skills and ‘make up time’ when their health, education and daily life return to a stable place again.

But how do you live with the fear of regression permanently?

What if every single skill your child gains you live in fear he will never be able to do again?

I have a video of my six year old son putting numbered pieces into an inset puzzle. It was a huge achievement for him and I shared the video on social media. Now a year later, and presented with the exact same puzzle, he has no idea how to do it.

And that is why I share.

He doesn’t master skills and then move on to better ones. His development is never that straight forward sadly. I need to be able to know he once did it. I need other people to know he once did it too. He has potential. It is just inconsistent.

He once said ‘mummy’. Last week he was saying what sounded like ‘oh no’. Some days he can point to letters in a book if I ask him to. School even sent a video home a few months ago of him ordering the months of the year with support. I have a video of him using a game on his iPad to put letters in the right place to make words.

Today he has done none of those things. Some days he crawls up stairs like he has forgotten how to climb them. He now uses a straw to drink out a cup because he often forgets how to drink out of an open beaker.

As fast as we gain one skill we often lose another.

My son has global delay, autism and neurofibromatosis type 1.

According to professionals this happens.

Regression.

I dread that word.

Help me do it in private please

I did it in the back of a car…it wasn’t very comfortable!
I did it on someone else’s bed…I hope they never find out!
I did it once behind some bushes…it was not my finest moment!
I regularly do it at speed for fear of being caught…
I am always prepared for it, he wants it far more than I do
But I always, always do it out of love.

Have I got your attention now?

Of course I am referring to changing my disabled son’s nappy!

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I live in a country where disability is recognised. There are government benefits and laws protecting and supporting both children and adults with disabilities. We have disabled access rights, laws regarding discrimination and an education system that should in theory meet the needs of all children.

So why do I still find myself in this twenty first century in a developing country changing my seven year old child in the back of my car or even behind a bush? That is a very good question!

Most buildings now have ramp access where possible and public buildings ought to have accessible toilets. My son is a wheelchair user but he can also walk. His disability is not openly visible. He is unable to speak but you would not know that by looking at him. He is two thirds of my height and wearing incontinence products for a small adult. It is very challenging to clean and change him now while he is standing upright. But still the majority of disabled toilets have no facilities to lie such a child on.

Disabled toilets are mostly designed for wheelchair users who are able to access a standard toilet seat with small adaptations such as handles and pull string flushes. Many are also used as baby changing facilities therefore from a business perspective doubling the use of the room. The only advantage this gives me is that there MAY be a proper nappy disposal bin, but there may not be.

I am long past the stage of being able to lie my son on a pull out table. He outgrew that before his second birthday. He is now at an age and height where questions are asked if I even take him into the ladies with me. Though I struggle to often close the door on some ladies cubicles never mind trying to fit me, a large changing bag, and my seven year old son in too! It is most unpleasant for everyone for me to do that.

I have a key (and rightly so) for disabled toilets. Most times this helps in being able to at least get any toilet open. Why should I have to take my child who is perhaps smelling and screaming to a member of staff to ask to access what should be a public right? Why should he be treated any different to any able bodied person?

I know there is a lot of campaigns out just now to bring accessible toilets up to a certain standard and have better access to these facilities. This is fantastic! But we also need to educate. I have had stares, rude names and inappropriate questions from strangers just for using a toilet! My son may not understand but what if he did? His disability is no-one else’s business. He may need me to support his needs for many years to come and if so that is what I will do. That could potentially mean changing someone taller than me. Does that matter? I suppose people just assume that the sign shows a wheelchair and therefore I should only take him in in the days he is in his chair. That is a bit like assuming you can only go to the toilet on the days you have a red coat on! Pretty crazy really.

I changed my son once again today in the back of my car. It was not pleasant and could so easily have been avoided. A simple bench within the disabled toilets would help so much. I refuse to lie my seven year old on a dirty toilet floor. He may not look disabled but I can assure you he very much is. And he has a right to dignity. And so do I.

I would far rather see to his private needs in private. A simple bench could make that possible.

In fact a simple bench would save many others from doing it in the back of cars, in other people’s beds, behind bushes and many other places besides. I want my son to be respected and be given dignity. Is that really such a big thing to ask?

I need to change my disabled son. Help me do it in private please.

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Walking on bubble wrap or walking on egg shells?

imageHave you ever worked or lived somewhere were the mood of just one person affects everyone else? The boss is having a bad day so the atmosphere in the office is awful? The baby won’t stop crying and so everyone in the family is stressed?

I am a full-time parent carer and more and more I am realising the effect that one of my children can have on my entire family.

My beautiful son has classic autism and neurofibromatosis type 1. He is on the verge of turning seven-year-old and as yet is not speaking, or toilet trained, is dependent on me for all his care and very much lives in his own world.

Some days looking after him is like walking on bubble wrap. We are all cushioned by the fact he lives very much in his own world. People can call him anything but he doesn’t care. We can spend hours watching lifts or listening to the noise of hand dryers in bathrooms oblivious to the fact the world is passing us by. People neither hear us nor see us as we walk on our bubble wrap and only the tiniest of ‘pops’ make us heard in our community. We are isolated, invisible almost at times, but very secure in our own protected world of routine. Provided all is going according to the world of ”Isaac’ the world can be a happy, settled and loving place. He can be the happiest, flappiest, most content child in the world. There is no ‘mummy can I have’ or peer pressure for the latest trends. There is no social pressure to join in the best football team, or streams of birthday parties to go to. I have no costs for computer games as he can’t play them and he is as happy as a pig in mud surrounded simply by plastic food or a few baby books. Some days walking on bubble wrap is the most beautiful, most peaceful and wonderful place to be.

But other days he wakes up at hours only night shift workers ought to see; bedding, child and room covered in your worst nightmare that you smell before you see. Or you hear that high pitch scream for hours on end. The bubble wrap we once walked on once again replaced by a harder, more dangerous and very precarious road known to many as walking on egg shells.

This is the side of autism people don’t feel comfortable talking about. The days when nothing goes right and my child goes from one meltdown right into another. Like the morning this week he freaked out simply because our car was covered in condensation due to the colder weather. Or the fact his breakfast was not exactly what he wanted or expected. Or the taxi came too early, too late, or reversed into the driveway when he wasn’t watching! The days when everything we touch cracks those shells and impacts on everyone in the entire family. There are days, sometimes many on the trot, when we have to look out for the safety of his twin sister as he would bite, attack, throw things, pinch or push her without any prior warning. There are days when I wonder if my back, or hair, or glasses can cope with much more aggression and attacks from a child fast approaching my own height and weight.image

It isn’t easy to say but some days we are afraid for our safety and that of our other child. The older he gets the more egg shell days we seem to have. Reversing the car, stopping at traffic lights, road diversions, coming in the house from a different door, not going to lifts or hand dryers, not having mash potato for every meal, you tube layout changing, Google street maps not looking like he expects it too, no internet, presenters coming on the television instead of the programme….and so on. Endless broken egg shells and meltdowns we can not control.

I have never really been a fan of eggs and I detest walking on egg shells. School see the bubble wrap boy mostly, which is good. And sometimes we get to see that boy too.

It is the start of half term here and tomorrow I have no idea if I will wake to walking on bubble wrap or walking on eggs shells and it won’t be me deciding how my own days goes.

Autism: it affects entire families and the way they walk so much.

Because it never ends

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I woke up this morning. Once again it was far too early. One again the alarm clock never got a chance to ring as screaming became my wake up call. My mornings, like so much of my life, are very predictable.

In a few weeks it will mark six years of it being like this. I thought children were supposed to sleep through the night at some stage?

I guess that is one of the things about my children having special needs. The early waking never ends.

So to stop the screaming I dress him. In the exact same things he wore the day before. So it may be a school day but it really doesn’t matter because he wears the same jumper whatever day of the week it is. Sometimes I can shrug that off, laugh at it, even smile at the predictability of it, but other times it gets to me deep inside. We’ve been doing the jumper thing since August 2013. It is one of the hundreds of things we are ‘working on’ just now but getting nowhere. It just seems relentless. And sometimes pointless.

On a positive he has still been saying his first word ‘on’ that we spent an entire week learning last week at half term. It still isn’t fully pronounced but he is trying. And with massive prompts he is using it for the DVD player, the iPad, and his jumper. But like everything, it is all consuming, all encompassing; exhausting. I can’t let it go because if I just do things without having him try and talk I will be training him that there is no need to speak; no reason to communicate. So now we have started it has to continue. And if we manage to, by some miracle, add in a new word, it will be the same again. We HAVE to take every opportunity we can to help him. It’s just sometimes I would like a break from it all.

We’ve had some problems with the national oral health programme. Not surprising when the simple task of daily teeth brushing is a battle for both children. So now both children have to attend a specialist dentist every six weeks for ‘familiarisation and treatment’. For one of them that means dragging him away from the lift in the waiting room every six weeks. And sometimes that is just another battle that never ends.

It just adds to the myriad of appointments we have anyway; Eye clinics, paediatricians, clinics, home visits, school meetings, training courses, genetics, opticians, and regular GP visits. And unless we want them to have hair like Samson then we have six weekly hairdressers visits too. For most of these we are still struggling to get past the lifts and the automatic doors. Sometimes I could punch the person who invented such things.

I know, I know, this is my life, and I need to get on with it. Lots of folk have it worse. I know that. And I am not depressed. In actual fact I had fun tickling my son and watching lifts with him on his iPad at 4:30am.

It’s just that knowing that this is for life: Autism, genetic conditions, learning difficulties, neurofibromatosis type 1, developmental delay. They are relentless. They put stress on families and make everything seem massive. They add strain to marriages and test the patience of saints. They require more energy than the national grid can provide. They can’t be cured. I can’t walk away.

Forgive me for blogging in a negative way. Please understand I am not feeling sorry for myself. I am exhausted. I am surrounded by battles many of which I may never win.

I now understand why so many marriages struggle when there are children with special needs involved. I know understand why so many parents of children like mine are on anti-depressants. I now understand why so many are begging for respite.

The reason is this: because it never ends.

It’s not about me

When I was young it was all about me. And then one day I got married. And it became about me and my husband. It stayed like that for far longer than it ever should have been, but then we became parents. And life no longer became about us but about two little children. For five years life has now been all about them. Even more so than many other parents as both my children have additional needs. They both have autism. One also has seizures, global developmental delay, neurofibromatosis type 1 and is vision impaired. No-one would judge us for it being all about them. Hospital appointments, school and nursery events to attend, therapists to liaise with, courses to attend, medications to be administered, nappies to be changed and so on. It could so easily be us four and no more.

But life is bigger than that.

So I open my life up to others. I am on social media outlets, I attend groups and courses and meet other families going through some of the same things we are. I take the children to clubs for other children with autism. I blog.

Why?

Because I care about others. I can learn so much from the road that others have walked before me. As a family we have negotiated some tricky terrain that has only been possible through the help and advice that others have given. Together we are stronger. Our breakthroughs become others breakthroughs and give others hope. Hearing other families achieve in areas we are still struggling with gives me hope that all things are possible. Even if I can not directly identify with thier issue or offer advice I can cheer them on, celebrate with them, encourage them. We can pray for each other, stand beside each other, link arms.

Because it isn’t about me.

Or my children really.

I could easily close my social medai accounts, stay at home with my children, not answer the telephone, stop blogging. But I would suffer. And I believe others would too. Not because I think I am someone special. But because there is something powerful and stronger about supporting others, praying for other people, looking out for someone other than yourself.

I am a people person. I comment on social media because I care. I listen to your struggles because I care. I blog because I care that someone might no longer feel alone after reading my blog. That someone may be helped by a strategy or therapy that helped one of my children. That some other family might identify with what we are going through and be encouraged.

It’s not about me.

So I am happy for the National Autistic Society to use us on their website (http://www.autism.org.uk/) The boy with the bubbles is Isaac.

And I am happy for our story to be used in their Christmas marketing:

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It’s not about me.

It’s about how many other families that will be able to access the help we did as a result of campaigns like this.

It’s about someone else knowing they are not alone in this journey.

It’s about encouraging others that progress can and will come in time.

Sharing your story is not about you. It’s about humility and vulnerability. It’s about giving of yourself, even when emotions are raw, knowing you are not alone. It’s about real life and daily struggles. It’s the public recording of a journey. A journey that others can adopt as thier own, identify with, run with, be encouraged by. It’s about awareness.

It’s about helping just one person.

The sleepless nights, the endless screaming, the loss of the one word he took over 4 years to say, the yearning to see my babies walk, the pain of seeing my son have seizures, the broken heartedness of getting diagnosis after diagnosis, the fighting for thier educational needs, the public comments that crush my Spirit, the constant appointments.

It’s all worth it.

Because these two are worth it:

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You are worth it.

Your children are worth it.

If one person is encouraged by this blog it is worth it.

We don’t all have to live our lives in public to help someone else. We don’t even have to be on social media. But someone somewhere can benefit from the journey you have walked. Someone can benefit from your friendship, your encouragement, your prayers. Someone can feel less alone just by knowing you care. Someone’s life can be changed by you.

It’s not about me.

It’s not really about autism.

It’s about parenting.

It’s about others helping me and me helping others and being there for each other.

It’s about awareness.

It’s about not feeling alone or isolated anymore.

It’s about rejoicing with others as they rejoice with me.

It’s about walking beside each other hand in hand.

It started with two little children but now it’s about hundreds of others.

It’s about so many other things. But it’s definitely not about ME!

“not looking to your own interests, but each of you to the interests of others” Phil 2:14

“rejoice with those who rejoice, mourn with those who mourn” Rom 12:15

“But encourage one another daily, as long as it is called ‘today’…Heb 3:13