My Photo
Location: United Kingdom

Yes...this is ALL about me, and mine. Marvellously self indulgent, feel free to tell me how splendid I am, leave comments, nice ones please, I have little kids and teenagers who can do the rude stuff. I am a grandma, to the glorious Joshua, I'm allowed to look frazzled and weary, I earned it. The older I get, the more I see that hanging on and being patient is worth it! They ( whoever 'they' are) are so right when they say you never know what is around the corner, it isn't always an articulated truck! It is vital to make the time for making memories, friends are the greatest treasure, I love mine. I am rich!

Wednesday, April 02, 2014

I'm not ready for this!

Oh it's been so long hasn't it? It's not as if I don't have anything to say but much more that there is SO much to say I don't now where to start and then can't imagine I would ever finish so I go back to good old FB and prat about with a couple of witty sentences and call it a good job done. in truth, I don't feel as if I am doing anything well. I am floundering with a confident bluster of fine words and convincing everyone ( but myself ) that I am doing jolly well thank you.
All I have ever wanted is to be a mother and that seems to be all that I am. Prayers answered, shut up self and get on with it!
Six children and remarkable ones they are too, never let it be said that I make ordinary or run of the mill kids, there's no churn 'em out and move along over here, I make them extraordinary and so unique that I can't find the answers anywhere on how to drag them up properly. So far I have managed to wing it, to somehow get an alright kind of result if I do say so myself.
They're a bit gorgeous, my people, the grown up ones are totally awesome. I am sure to tell all and sundry that their splendidness is all down to me, I grudgingly admit that the first one did leave his mark where their looks are concerned and that's OK because he isn't such an ugly git as it goes but the actual essence of them, the people they are, the oh my goodness they are great human beings, I take the credit for that and despite some awful hurdles, we did it, they are all grown up and rather marvellously so.
The littles, well we're still working on them.
Seth is 13, an actual real teenager. I like him. Who knew that was possible? He can be really good at the teenage thing and there have been days where I would happily swap him for a cat and an old cardi and just curl up in an old armchair and pretend that was perfectly normal but he is so smart and hilarious, if we manage to hold it together while he is doing that whole ' I am becoming a MAN and must try out my powers, ROAR' thing we can take a deep breath and then talk about how that doesn't really work in our house because I am SO old and have been there, done that and always win and then we agree that he should just concentrate on being a brilliant little basketball player with a brain like a computer and I should concentrate on being the boss of the whole world and we'll all get along swimmingly. It's working so far, I shall continue to wear the hat of mother of the year with him.
Eli, glorious, sweet, laid back Eli, about to leave the cosy world of primary school and begin being a  big boy at  secondary school, something we don't think of too often because he is my baybee and still just about has chubby cheeks and sucks his thumb when he is tired and overwhelmed. Big boy stuff can sod off for a few more months and he can stay little.
Then we have Isaac and he may be the one that breaks me. Who would have thought it?
He is the most beautiful boy, even at 12 he is still a bit breath takingly handsome, I say 'even at 12' because they do change at 12, they get all gangly and smelly, start to get greasy and awkward, he is doing all that stuff but is still quite beautiful, clever boy! He is possibly the most unique of my children, (when you see all my kids and then read that statement I would forgive you for choking on your own spit because they're all a bit weird, truth be told.) 
He's writing the book as he goes along, is Isaac, and he's sitting on the transcript, just to keep it interesting. Oh he's a prankster is Isaac. He is autistic, or maybe not and he has selective mutism, which used to be this little diagnosis that was in the background and didn't mean much because he is autistic. Now though, he has SELECTIVE MUTISM and is possibly autistic, or not. Bloody hell.
I never knew that a diagnosis could matter so much, I want to scream that it DOESN'T MATTER! It doesn't. He is who he is and frankly, professional people, I would like you to stop fretting about WHY he is this way and just find some way of helping me help him.
He isn't happy in the world, he is afraid of everything, he is truly afraid of life and every day he gets more afraid of it all.
If I were to win the lottery I would tae him out of school and I would move to the countryside somewhere, unschool him and let him learn what HE needs to learn, as he needs to learn it.
I would tae away the fear and slowly let him learn how incredible this world can be.
It doesn't matter to me that he isn't learning 'stuff', you know, French and Geography and maths. He knows that stuff, probably as much as he will ever need in his world. He learns the things he is interested in at the speed of light, he likes what he likes and it doesn't matter how important the other stuff is supposed to be, he isn't gong to do it, learn it, like it or even give it the time of day.
He can't speak to people outside of this house. That's the selective mutism and let me get this straight, he isn't selecting to be mute, he isn't choosing not to speak, the inability to speak is choosing when to manifest itself. There is no decision making for Isaac, when he is not at home or with people other than family, he cannot speak and  along with that comes a myriad of other social issues. When he is anxious and he is almost always anxious when he is anywhere but at home, his face becomes frozen, he cannot nod, shake his head, move his eyes ( other than rolling them in a barely noticeable way that I can see and interpret and now his Senco at school is beginning to understand) he can't use sign language or write things down, point to words on a board or in a book. He is, for all intent and purpose paralysed. His mind is as sharp as ever and he hears and understands everything going on around him, he notices things about his surroundings that I wouldn't see if I sat in the same place for 3 hours, even though eh appears to be staring ahead and even though it really looks as if he is completely shut off from the world, he sees, hears and remembers everything.
It doesn't matter how gentle, kind, loud, authoritative, bullying, persuasive, pleading people can be, he doesn't move and he doesn't speak. He CAN'T.
He has not been to a single lesson for a year, we have had CAF meetings, DAF meetings and every kind of paediatric intervention available and nobody knows what to do, time and time again I hear " if he won't speak, I can't help him" and really, what is there to say to that? If someone says " I can't help him" then they can't, can they?
I have found someone that I feel so sure would be able to help him and I have asked again and again, his paediatrician, GP, autism worker, CAHMS, to refer him to this specialist at Great Ormond Street Hospital and they all keep passing the buck and saying how they aren't sure they are the right person to refer him and I can only think that it is ego or pride, a reluctance to admit that they can't help and that makes me SO ANGRY.
This man specialises in children who have been failed by their local authority, he helps children who may be on the spectrum who have crippling social and communication problems who cannot find the help they need where they live. HELLO?!?! Nearly 3 years of going from one person to the next and back to the first one and on to the fifth and all the time hearing " If he won't speak to me I can't help him" and " We can't really assess him for autism if he won't react to us" and pardon me if I am out of line here but WHAT IN THE NAME OF ALL THAT'S FRUSTRATING does that matter? If, after 3 years he is still sitting like a  stone, unblinking unable to speak or react in any way does this not seem a matter for urgent help of some kind?
For the last year we have been trying to get him to learn at school, he has been on flexi time, he has been given 2 x 20 minute sessions o Tuesday and Thursdays and a Wednesday session of 30 minutes and it has taken me since January to get him in the classroom, that's it, he manages to walk in the door and stand there, not speaking, not learning, hardly breathing and then when his time is up he bolts, he is out of there and in the car and back home, where he breathes and WHOOPS and makes bizarre noises until all that tension is OUT ( the most hilarious was a wee of barking "CRUFTS!" because he saw a commercial for the dog show and liked the sound of the name and so that week was random "CRUFTS" bellowed whenever the need took him, in varying dog like 'voices'
Now the school have said they want him to log into a learning website and do some actual work. That's a great idea except, look, I am not a teacher, I am not a home educator I don't want to home school him and he is quite clear that as H and I are not teachers and this is not a school he isn't about to do school work because who will mark it? What good will it do him? What if he doesn't do it well enough? what if it's the wrong work?   Why does he need this stuff in his head? And guess what, I DON'T KNOW!
The law says he needs to learn certain subject and he has to stick with a curriculum and I want to find the law, kick it's arse and say "WHY?" Is this child of mine ever likely to go to the Job centre and line up a pile of interviews?  What work will he do if he can't speak? If he can't walk into a shop and ask for something he needs where will be use French or Spanish?
Why can't I make anyone understand that he needs to learn how to live before he can use any other knowledge, he needs to learn that he doesn't need to be afraid of fear. He needs to learn that he can be outside and nothing terrible will happen, we need to find a way to help him not be overwhelmed by the sounds and the sights and the people out there, that he can walk past crowds and be OK.
Time is flying, he is nearly 13 and as time passes he gets more afraid, feels more pressured and stressed by the most regular of every day happenings.
I feel so helpless because without money I can't do anything, I can't take him where I think he can get help. I can't buy him the help he needs or the space that will let him breathe.
I want to make light of the things we go through, this boy and I and I will. I had to get this out first and set the scene so that the little details can be enjoyed and understood and now I've done that, I can come back and give details that one day, I can look back at and laugh, I hope one day I can show him and ask him if he remembers it all, I hope one day he can explain to me what is going on inside that beautiful head while he is being a gorgeous statue, unblinking while I dance around him trying to get some indication of what to do next.
A little snippet for you though, he had to fill in a form for school about him and his family and one of the questions was "What does success look like " and his reply was "The gumtree advert" I had to look that up on youtube.

You're welcome.


Blogger Julie Q said...

I didn't have time to read the full post, but I did read most of it. The end is too funny Helen! :)

When I knew Zachary needed help and we had no insurance that would cover mental health, it was frustrating. I'm sorry it's hard to get help for Isaac. :(

They say money can't buy happiness but it sure does make it easier to smile.

11:03 am  
Blogger TN said...

Has Isaac ever been checked for Fragile X Syndrome? He sounds exactly like my two grandsons who both have Fragile X.

8:51 pm  

Post a Comment

Subscribe to Post Comments [Atom]

<< Home