Conversations with a six year old about disability

We were sitting waiting in the car; unassuming, ordinary, an almost everyday occurrence. But the conversation was anything but. I have replayed it in my head a few times now because the insight, compassion and sheer innocence of it all was something very special.

Children see the world so differently. And there is so much we can learn from a six-year-old.

“Mummy, we are parked in a wheelchair space” she piped up, so matter of factly.
“I know honey, it is ok. Isaac is with us (her twin brother who has a number of disabilities) and I have put the blue badge up.”
“But you have not got his wheelchair?”
“That is ok too sweetie as not everyone who is disabled uses a wheelchair. Isaac is disabled but he does not use his wheelchair sometimes. The picture is just used to tell other people the space is for disabled people.”
“Well that is a bit silly! I don’t like that sign mummy because it is not right. Why have it for cars? They are not disabled. And it is not right on the toilets too! Wheelchairs don’t use toilets, people do!”
“I know. But they use it as a sign to mean disabled because wheelchairs are something lots of disabled people use. And on the toilets it is just like the sign for woman and men and changing babies too”
“Well the baby change one is wrong too! My brother is not a baby and you take him into the baby change too sometimes. Do shops not think that sometimes big children still need changed and they are not babies? That makes me sad because my brother is not a baby.”
“I agree. Sometimes it makes me sad too darling. But it is just a sign and nobody means it to upset people.”

There was a pause while I sorted out her brother who was upset and in doing so I knocked over his parking badge. My daughter noticed and continued…

“Well, if I was disabled I would not want a blue badge…”
Another pause while I wonder how I should reply to this but before I can she continues…
“I would want a pink one! Girls should have pink ones!”
I smile to myself but secretly think she has a point.

“Is the car beside us disabled mummy?”
“Cars are not disabled darling. It is people. And yes either the person driving or someone in the car is probably disabled as they are in a disabled parking bay just like us.”
“What disabled do they have?” (I should probably correct her grammar but decide that might interrupt the conversation too much)
“I don’t know. Sometimes you can tell quite easily if they need lifted into a wheelchair or if they use crutches but sometimes, like Isaac, you can’t see what someone is struggling with. There are lots of disabilities people can have.”
“But you can’t ask them can you? Because what if they are like Isaac and they can’t talk?”
“That is true.”

The rain has stopped so I decide to get both children out the car and into the supermarket but my daughter still has plenty to say. As I hold their hands tightly my daughter raises another valid point.

“Why are all the other trolleys next to the parking bits but the one for Isaac always so far away? Everyone else can walk but he needs help.”

Good question!

As we eventually find the trolley we need and strap her brother in she has some more observations.
“People that help like you mummy are very strong. And I think you need to grow too! The handles are very high up even I can’t reach them!”

Another valid point. This child will go far! She sees things most adults don’t.

She proceeds to carry on talking and questioning and commenting as I try to think what essentials we need. Meanwhile her brother flaps and makes noises and presses the same noise on his iPad continually. I finally make it round the store and pay for our goods.

On the way back to the car the rain has got heavier and my little blue-eyed six-year-old decides having a special bother is actually a good thing.

“At least we got to park near the shop so we don’t get wet. I don’t think disabled people like getting wet so that is why they have spaces near the door.”
She isn’t quite finished…
“If I had a shop I would have spaces for people with children, spaces for disabled people and spaces for people like you mummy.”
“Spaces for people like me?”
“Yes. Ones for tired mummy’s like you!”
I am not too sure what to say to that idea but I do think it would be very popular!

As I drive the short distance home with them I am so grateful for both of them. Grateful for one who can talk, and question and discuss such subjects as disabled parking, changing facilities and suitable shopping trolleys and grateful for her twin brother who is making these subjects such everyday events and breaking down prejudice and taboos without even saying a word.

What does my six-year-old think of disability? She just thinks her brother is special. He has a blue badge, sits in a special trolley and goes to a different school. But he is her brother and she loves him.

What if no-one ever understands him?

I am a parent. So by nature of the job description I worry for the future of my children. I worry about wars and disasters and car crashes and bullying and wether or not my children will be messed up by my parenting. But mostly I worry if anyone will understand my son.

Because at six years and nine months old I still struggle to understand him myself.

My child is so unlike me. I try to imagine what life is like for him but in all honestly I just can’t.

I talk to him all the time. But he never talks back. I read to him every day but he never asks anything about the story or attempts to learn to read it himself. I make him food and although he eats it I have no idea if he is just tolerating it out of hunger or if he actually enjoys it. I sing nursery rhymes to him but I have no idea if he understands a word I am saying.

When he is sick I have no idea if he is in pain and if so where.

I know he loves lifts, hand dryers and mash potato. But I have no idea why.

For over 600 days all he would wear was the same jumper. Lots of people have had guesses as to why but only my son really knows. And he can’t tell us.

I took him to a sensory room recently where there was something called a musical wall. He touched that wall in the same place over and over again to hear the same song. I was so desperate to ask him what is was about that wall he so loved. I would have loved to hear his little voice join in as that wall sang ‘you are my sunshine’ for the hundredth time.

What was he feeling? Has he enjoyed the other places I have taken him this summer? Does he like school? What would he like for his birthday?

There is just so many unknowns.

I have read books. I have spoken to therapists who apparently have trained for years in his conditions. I have attended so many courses. I have even spoken to many adults who have the same conditions as my son. I have spent six years and nine months living with my son.

And still so much about him is a mystery. We are all guessing. And we could all be wrong.

Why can’t he speak? Why does he flap? What is it exactly about lifts and hand dryers that he likes so much? Why is it so traumatic when I cut his nails, or wash his hair, or use a different plate for his dinner? Does he miss me when he isn’t with me?

I want to know. Because if I don’t know who else ever will?

So yes, I worry about the future of my non verbal, severely autistic son with neurofibromatosis and learning difficulties.

I worry that people will take advantage of him. Or hurt him. Or never allow him to be himself. I worry about whether he will ever learn to communicate or whether anyone else will be able to communicate with him.

There were moments today as he pulled my glasses off my face yet again and climbed all over me that I wondered how much longer I would be able to care for him full-time. And that scared me.

He is my son. I adore him. But I don’t always understand him.

And not for the first time I wonder…

What if no-one ever understands him?

If he was your baby would you not worry about that too?

They never told me THAT at diagnosis!

They 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!

How do you explain they won’t ‘get better’?

If I had a pound for every time someone told me my children will ‘grow out it’, or ‘be fine when they are older’, I would be a rich woman. People expect you get ill or have difficulties for a short time, you have a period of struggling, and then you ‘get better’. You ‘get over it’ or ‘snap out of it’, or you have an operation or take medication, and then you become ‘normal’ again and function like everyone else.

But what if the difficulties and struggles are life long? What if you won’t get ‘any better’ even if you improve?

It is three years this month since we received my sons first major diagnosis. Though the initial shock and pain has eased I still get sad some days. Because three years on we are still in that same place.

He still has the exact same diagnosis. He hasn’t been cured. He hasn’t went into remission or stopped having his difficulties. I can’t read his diagnosis report and think they are talking about an altogether different child than the one sitting on my knee.

Yes he is making progress. But it is slow. And in spurts. And sometimes we still get regression. Oh are we allowed to mention that? The dreaded ‘regression’ word? Am I allowed to admit that sometimes my children struggle more than they did before? Or lose a skill they previously mastered?

How do you explain they won’t ‘get better’?

It sure looks like my son is getting better. After all for 678 days all he wore was the same red school jumper yet all of a sudden now he will wear other tops? That sounds like improvement. And it is! My daughter has started to master reading and writing. Surely that is her ‘getting better’ you suggest? And yes it seems so.

On the surface my children are both coming on well. We have had a recent successful play date, we have had them taking part in school activities I never dreamt they would ever manage, and two weeks into the summer holidays we have managed some days out and visits to parks. It seems like everything is ‘getting better’. It seems like to some that all is well.

Because people find the life-long bit so hard to understand. People see what they want to see. And after a while they get bored with seeing the same struggles, the same excuses and the same problems. People want to help and get upset when they do help but the problems still exists even when they have done everything they can to support. We look for quick fixes and short-term solutions and life long conditions need on-going, energy draining, never-ending support. It requires a commitment few are willing to make.

It is hard for people to understand why three years down the journey I still get sad some days. Why? Well because some days it feels like I am still where I was three years ago. It hasn’t gone away. And it never will.

There is no cure.

My daughter may ‘get better’ at social situations but it will never quite come naturally to her.
She may ‘get better’ at understanding that not all language is literal in meaning. But idioms and sarcasm will always need explaining to her with patience and understanding.
My son may ‘get better’ at being understood without any speech. He may one day learn to communicate via a device or language or pictures. But he will always have severe communication difficulties to some degree.
My son will never ‘catch up’ with his peers. He is not suddenly going to run a race, or write a story or learn to swim. He may never speak.
I have no idea when they might master potty training.

We are in this for the long haul. When others get ‘bored’ and move on we will still be here. We will still be struggling on.

Doctor’s can’t ‘cure’ my children. They won’t ‘get well soon’ or ‘grow out of it’. It won’t ‘magically disappear’ when they get older or become teenagers. In fact it may magnify.

You may not see them struggle but they do. It may seem ‘cute’ to flap and suck on your clothes at six but what about sixteen? It may seem ok to have your tongue out all the time at six but what about ten? Or thirty?

My children have autism. My son has neurofibromatosis. They will become adults with autism one day and my son will become an adult with NF. His tumours will grow with him and his skin will grow fibromas and patches throughout his life. He will become an adult with social and communication difficulties and a learning disability.

They will ‘get better’ at developing a thick skin and coping with ridicule. They will ‘get better’ at devising coping strategies and becoming a part of society in some way or other.

But they won’t ever ‘get better’ from their life long conditions. And I may never ‘get better’ at coping either.

I may have more good days now than bad. But some days I am right back where I started three years ago. Life long condition means a life long journey. I know some people find that hard to deal with. But you know what? So do I.

Am I doing the right thing?

Self evaluation is a very positive skill to have. All good parents stop and think at times ‘am I doing the right thing’ right from the very moment their child is born. Decisions about wether to breast or bottle feed, what sort of clothes to put on your baby and where they will sleep are all everyday personal decisions all parents face. And there will always be others who feel you are doing it wrong.

But what if your children are not meeting milestones? Or they receive a diagnosis of any sort that makes ‘normal’ development more of a challenge? What should be a time of needing more support and encouragement often becomes not only the time when others judge and question you more, but it also brings with it an even greater level of self-doubt as a parent.

Did I do anything wrong when pregnant? Was my birth to blame? Did I feed my baby the wrong foods or give them inoculations that damaged them? Should I not have gone back to work so early? Did I not bond with them enoughh or sing to them the right songs?

So many of us have been there. I have too. And even though my twins are now 6 I am still asking myself almost daily ‘am I doing the right thing’?

It seems that at times I am controversial without even meaning to be. Even blogging publicly about my children seems to make some people feel I am damaging them. I am not naive. I am well aware that one day my children could read my blog. In fact I will be letting them both have a copy when the time is right. This is my journey but it is very much their journey too. I actually hope having a written record of how far they have come is helpful to them in their own way as they begin to understand more and question who they are and what their diagnosis means to them. Naomi aalready shows much more awareness and we talk together about her autism, her brothers autism and her brother’s neurofibromatosis. I don’t believe in hiding these issues from her and there is not one blog I would be embarrassed for my children to read one day.

Naomi has recently been assessed and approved for a wheelchair. I never really thought that would be controversial either. No-one seemed to question when her brother got one months ago but somehow because she can talk, she can walk and she attends mainstream school it seems that I am ‘making’ her disabled by putting her in a chair. Maybe I am more vocal about her brothers difficulties, maybe they are more obvious than hers, or maybe the fact he attends a special needs school seems to make it more ‘acceptable’ for him to use a wheelchair. But Naomi has her own struggles and I am not pushing her to use a wheelchair if she is not comfortable doing so. I have asked myself many times if I am doing the right thing pushing her around places where she may be seen by others in her school or community. I know the impact this could have on her far more than she understands at just 6. But her safety, her pain level and her comfort also must be taken into consideration. And whether she is in a wheelchair or walking she will sadly always come across people who will stare, laugh and bully. It is my job to help her cope with this as she grows and develops greater awareness.

My son loves lifts and hand dryers. He craves them much like a smoker craves a cigarette. And so I take him to them. And I let him press the button to turn the dryer on or call the lift for someone. It brings him huge delight. And the majority of people I meet are happy to let him have that pleasure. But the other side of this is that sometimes in life we go into a shop and we have no need to use the lift or the dryers and therefore his sensory craving can not be met. And that results in meltdown of epic proportion. And then I once again question myself ‘am I doing the right thing?’ Do I allow him to have his craving in small amounts to allow me to achieve other things I want, or do I insist on carrying on with my business and that he has to learn that life is not always about him? Everyone has their own opinion on this and people will judge the fact I have deliberately taken him to retail parks just to see lifts and not buy anything. It is a balancing act and I have to live with my son and my decision. So I do what is right for me and him and my family.

People may be shocked to know I have resorted to feeding my six-year-old baby food at times just to get her to eat. I have allowed both twins dummies way beyond an age where it is publicly acceptable, and I have seen to their personal hygiene needs from the back of a car many a time. And just yesterday I took my eyes off my son for a second and found him alone in a supermarket lift (he is non verbal and could have been anywhere!).

Everyday is a challenge. Everyday I am making decisions based on today’s needs and tomorrow’s future. I live for today but am very aware of the future repercussions that my actions may have on both my children.

And I know I may get it wrong. And so will you.

Because I am human. As as a mum I have the future of two very special children in my hands. I take that very seriously.

It is ok to disagree with me. It is ok to worry about how things I do now may affect my children’s future. It’s even ok to do something different with your own children.

Just know I love my children. And I am doing what I feel is best for them. Both now and in the future. And every single day without fail I am thinking to myself ‘am I doing the right thing here’ because my children never came with a manual. None of them do. And when they have extra support needs that makes things so much more complicated.

Am I doing the right thing? Time will tell I guess.