Fighting on

It has been a week of fighting this week. The children have been fighting off colds and coughs, and as well as fighting off the same germs as them I have been fighting with the local authority and my own emotions.

We heard from the local council this week regarding which school they believe to be best placed to suits my sons needs. We already knew from dealings with them last week that we would not be receiving the school we wanted yet I still found the tears rolling down my cheeks when we opened the letter. The placement was for a school we had never expected and in fact one which had even been discussed for his twin sister as a possibility for next year! After the initial shock and anger we called the school to visit and called the council to discuss why this option had been chosen.

It would have been nice to have had more time to get over the shock but deadlines on the letter stated that we had just 14 days to decide if we were accepting or declining this placement and the letter arrived just 2 days before the schools closed for over a fortnight for Easter holidays! I always try to see the positive side to things but even I had to agree that the timing of this letter was deliberate.

Anyway, we have now duly visited the councils placement choice for MY baby and as we expected it is highly unsuitable. The classroom is upstairs and Isaac can not yet climb or descend stairs safely without one to one support. He would not be receiving one to one support in the classroom either  and would also be expected to have lunch in the dining room with almost 300 mainstream children. The school do not have an on site nurse able to check him over in the event of a fall or injury and he would be expected to access the playground with all the other mainstream children. None of these are things that Isaac would be able to cope with and so we have appealed the decision and have requested the school of our choice.

I have had to force myself to fight. I hate fighting but when you don’t have a peace about something you just have to fight for what you believe to be the right thing.

And if there is one thing I can find the strength to fight for it is my babies. If you plant seeds in the wrong environment they will not grow or flourish. And if animals are reared in the wrong location they do not learn the skills needed to survive. How much more with children? In order to learn my children need to feel safe, loved, secure and happy. And as a parent it is my responsibility to ensure they have the right learning environment to grow and thrive.

I have even thought of home schooling. But I know as much as I love my son with all my heart and strength I do not possess the necessary skills to break through his autism and severe learning difficulties. I have been trying for the last 4 and a half years. It has taken years just to get fleeting eye contact. I spent years trying to get him to learn colours and shapes and numbers and enjoy the challenge of a simple shape sorter. He still thinks brute force will help get the circle into the square hole! And he still chews everything in sight. And we still have no language. He is still in nappies. And dressing him is still a huge fight.

In fact so many things have become a fight. The fight to get him to eat healthy and not just live off chocolate. A fight to change every nappy. A fight to get him to sleep at night. A fight to keep him asleep. And sadly a fight to get his needs met by professionals.

I’m weary of fighting this week. Weary of the battles daily.

But he is my baby. My longed for child. My reason for carrying on. I look in his face and know the fight is worthwhile. Because he is worthwhile.

And so I’m fighting on.

Sometimes I cry…

This has been one of my hardest blogs to write so far. It has been a very challenging week and most days tears have been shed. And tonight all four of us shed some tears. It hasn’t solved anything but it helps release the emotions of a stressful week.

Firstly there have been tears thinking of preparing my baby boy for starting school in just 5 months time. Having your baby start school is an emotional time for any mummy. And everyone says how emotional it is to see your treasured baby suddenly wear school uniform and carry their first school bag. But for me it really is my baby. He is still drinking out of a baby bottle. He is still wearing nappies. Still reliant on me to meet his every need, still eating with his fingers, sucking on a dummy, being carried up and down stairs and still unable to speak a single word. He only took his first steps 18 months ago. And because of the system in the area we live in we still don’t know where the local government plan to send my special baby to school. As a parent I have researched in detail all the local provision available and even tried to visit schools to see what services are available. Frustratingly the council are not allowing me to visit my first choice school until they have formally notified me of their decision. I still don’t know when this will be. Thinking of my baby starting school makes me cry. Will they know how to communicate with him in a way he can understand? Will they know he would happily carry on playing in a dirty nappy for hours trapped in his own world? will they have any idea why he is flapping? Will they let him take his socks and shoes off like he loves to do at home? Will they know what his all time favourite things are to calm him down (water and feathers)? Will they care for him like I do, hold him when he cries and tell him how special he is? It may be 5 months away but I still shed a few tears thinking of all this.

Secondly there have been tears after some difficult phone calls. Calls from people who have never met my precious boy but who feel they can tell me that his needs are not ‘severe and complex’. I cried tears of sadness after that call. Then a call from a friend telling me a good friend of mine had just passed away. More tears. And the following day calls from a charity willing to help me fight to get my son into the right school to meet his needs irrespective of what the council recommend.Tears of relief and gratitude.

Then I shed more tears after a routine eye appointment for Isaac uncovered news that due to his neurofibromatosis type 1 and other scarring on his right eye it is likely he has very little vision in his right eye and that over the last 8 weeks there has been a real deterioration in his vision in this eye. My poor boy was unable to communicate any of this too me. And to discover all this he had to endue 24 hours of blurred vision and possible headaches due to having to have eye drops put in both eyes. Oh my baby… sometimes I just cry for you and everything you are having to go through.

Tonight he fell and really bumped his head at a children’s club. It was a real sore one and tomorrow he will have quite a mark on his forehead. I held my baby boy and shed tears with him while everyone continued playing around us. I wish I could wrap him up and shelter him from life. I wish I could just sit and hold him in my arms sometimes and pretend the world is just passing us by. I know he will survive this bump and I also know there will be so many more. If his vision is so poor and his co-ordinations and motor planning so affected by his autism and developmental delay there is no doubt there will be many more bumps to come. Please Lord protect this baby of mine from any internal damage I can not see.

And now comes the hardest part to blog about. The hardest part to share with a world of people I hardly know. The part this week that has brought more tears than any of those other challenges we have faced joined together in the last 7 days. The reports and evidence that my baby boy has stated to self harm. He has started to bite his wrists until they bleed and does not seem to feel the pain. Oh Jesus….help me as I drown in my tears. Carry me through this valley. I want to talk to my baby, let him open his heart to me, hear his cries, share his tears. Instead he chews on a metal teaspoon watching peppa pig, and so locked in his own world I can only imagine the pain and frustration that could cause my 4 year old baby to self harm. Is it excitement, frustration, anger, stress? Is it sensory related or a sign you are hungry or thirsty? Oh baby…I wish you could tell me. I want to help you.

So in all this I cry and I pray. And I believe that tomorrow is a new day. A fresh start. And God will carry us through all this. I still have a strong faith…it’s just sometimes I cry.

“you keep track of all my sorrows, you have collected all my tears in your bottle. You have recorded each one in your book. My enemies will retreat when I call to you for help. This I know: God is on my side.” Ps 56:8-9 NLT

Nothing’s going to get in our way

Dedicated to Isaac Gwynne:

 

I wanted to be your play mate

I wanted to be your friend

To stomp around like dinosaurs

In the land of let’s pretend

 

Instead we’re staring at wires

Or fiddling with a piece of string

You are trapped in a world of your own

and I don’t know where to begin

 

I wanted to be your chief cook

Make you plenty of home made food

But you prefer to suck on a lollipop

or chew clothes that can not taste good

 

I wanted to be your tour guide

Show you places and people galore

But you prefer to pace up and down

The world’s just a place to ignore

 

I wanted to be your teacher

Read you stories in bed every night

To teach you independence

and a knowledge of what’s wrong and right

 

But you don’t know colours or numbers

And you struggle to hold a pen

Toilet trainings a mystery

everything’s done again and again

 

I wanted to be your mummy

show you something new every day

and autism won’t ever stop that

because nothings going to get in our way.

 

 

I just heard him say ‘mum’!

I’ve just had my mothers day present 4 days early. And it was priceless! My 4 and a half year old just said his first word and it was ‘mum’. Excuse me while I cry.

It’s not like it’s the first time I have heard ‘mum’ said today. His twin sister says it more times than my little ears can cope with some days. But this is the first word Isaac has said. I can not guarantee he will say it tomorrow, or next week or any time after that. But he said it tonight and that is something I will hold onto for the rest of my life. You don’t ever forget your child’s first word. And you especially don’t forget it when you have waited 4 years and 4 months to hear it. This split second will remain in my heart forever.

And the hope it gives me is incredible.

To get to this place Isaac has had learning support at home and at nursery, 14 months of weekly speech therapy, I have attended a four month course on how to communicate with my autistic child, and he has had daily one to one with countless nursery staff and other professionals. I have sang with him, read to him, played with him, prayed for him and did everything I could think of to help him. I have simplified my language and praised him for trivial things like ‘good sitting Isaac’, ‘good walking Isaac’ and ‘super waiting Isaac’. I have rolled balls to him for hours, ticked him to get a reaction, named all his favourite toys, whispered in his ears, stroked his hair and held him close. But most of all I believed in him.

Even though he has been making some slow progress recently I still wasn’t expecting tonight’s miracle outburst. Sometimes you just find yourself in a place where you continue on and wonder if any of what you have been doing is getting you anywhere. And then it happens: breakthrough!

And often when you least expect it.

Tonight was just an ordinary Wednesday night for us. The kids had been to their regular kids club for families affected by autism. Isaac went through his usual transition routine on coming home and the house was pretty calm. Dad started running a bath for the kids and I told them both it was bath time (Isaac’a favourite time of day as he just loves water!). Isaac understood the cue and began walking up the first few stairs to head to the bathroom. I followed behind and on the third step he stopped, turned, looked me in the eye and just said that magic word every mother longs to hear. “mum”. That was it. Nothing else. I could have kissed him, held him, never let him go. But that would have overwhelmed him. Instead I held his hand and we climbed together and headed for his favourite activity of the day. He was totally oblivious to the tears forming in my eyes and the faster beat of my heart. He had no comprehension of the miracle encounter that had just taken place. He was just happy to have my full attention and strip off and get in the water. That’s my boy!

Just two nights before this,when out in the car, his twin sister had asked, out of the blue, when her brother was going to get better and not have autism any more. And despite the fact she caught me unprepared (are we ever really prepared for the questions our kids ask?) I did my best to reassure her that her brother would always have autism but he could still learn to do lots of things she can do like saying words, playing with toys and going to school soon. With her usual 4 year old faith she replied “He will talk to me one day mummy. That’s what children do.” And then she went back to talking away about her favourite DVD characters once again. It wasn’t appropriate or important to correct her or break her faith. If she can believe her brother will talk, then so can mummy. So of course, she wasn’t even phased one bit by tonight’s miracle. She was expecting it so allowed her brother his moment of glory and then, like any child her age, took advantage of mum’s good mood and asked for extra toys in the bath! And the evening continued like any other.

Except something miraculous happened in my house tonight. We had a breakthrough. We reached a milestone. We shared a treasured moment. We overcame autism and neurofibromatosis type 1 and any other name you want to say my son has. He said a word…in context…with eye contact…with meaning. He touched my heart. He just called me “mum”.

Breakthroughs come when you least expect them. Never give up believing.