We may not be able to go on holiday next week

[kazzie]

There is a good chance I might have to cancel my holiday of next Thursday.If I can't go I just don't know how I will cope with it.

My youngest Mattie has Asperger's syndrome and XYY syndrome (extra male chromosone).he is at a main stream school and they just weren't prepared in any way for his 'special needs' when he started last September.After a terrible year it ended with him being statemented with a LSA (learning support assistant) with him for 20 hours out of 25 starting this new year while he is in year 8.

He was excluded from school about two weeks before the summer holidays and i was told if there was one more incident at school he would be expelled.As he was going to have his support in place after the summer holidays they agreed it was best if he didn't return until after the summer holidays.The holiday for his school was extended because of buliding work so he was at home for nearly 3 months.
He desperately wants to have a friend and doesn't have one,so spends all his time with me.This is not what a 12 year old should be doing.but if I could buy him a friend I would do. He had a crisis in the holidays and had a perod of insight into his condition for the first time.He was crying and sad that he waould never be 'normal' and for the life he realised would be different.He expressed wanting to go to sleep and never wake up.I have never experienced depression in a child,it is absolutely heartbreaking.

The great new start at school lasted a week,and Mattie is excluded at the moment.The uncontrollable rage that is a part of Asperger boys in adolesence has become unmanagable at home and at school.I have an emergency appointment with a child/adolescent psychiatrist at 2 today and an emergency meeting at school at 4 with his ed. psch. and all the experts.

If I had been offered medication even 2 weeks ago I would have refused it for Mattie,but basically if he isn't prescribed some today we cannot go on holiday next week.

There are no appropriate schools in London or outer boroughs.This leaves residential education.There is a school called Southlands that is the only school in the country that has only Asperger boys.The children come home only about one weekend in three and for the school holidays,they have what they call a 24 hour curriculum.The other school has some Asperger and also emotional/behavioral challenging children where the children go home one weekend in 2 and the school holidays.Mattie is adamant he would like to go to Southlands where there will be 'children of my kind'.But though he understands he will be living away from home ,I don't think he understands the enormity of it.It is a life changing decision for all of us and I can't concieve of one of my children not properly living with us.Altough I console myself with the thought children have gone to boarding school for hundreds of years.

I don't need to explain to you how much this holiday means to meI .It is not a case of cancel it we'll go agin some other time,it is literally my lifeline that helps me cope when things rae difficult I'll think about the holiday or come on the boards and immerse myself in there.when I said to DH if we cancel the holiday I fear for what it would do to me,I'm not joking!

I'll let you know later how both meetings went.

Any thoughts or advice gratefully received.

 

[Mazzy]

Hi Kazzie

I'm so sorry, to hear this, a PM is on it's way to you.

 

[SpottyDog]

Oh, Kaz I wish there was something I can say or do to help you with this burden, but wouldn't know where to start. I just hope it helps in a little way to know you have friends that think and care about you and Mattie and wish more than anything for this to be brought to a happy and satisfactory conclusion.

I hope things turn out ok and you get to go on the holiday you all definitely deserve.

Tell Mattie I'm thinkin of him. He can come up here and sit with me anytime ( sit still that is )

Dave

 

[Astrid]

Oh Karen , I'm so sad that life is still treating you all so cruelly right now. Things all looked so positive when I spoke to you on the phone last.

Text cannot express properly how much I feel for you right now and until we speak this is just to let you know I'm sending you loads of love.

Your friend, Astrid xx

 

[kazzie]

Thanks to you both. I feel weepy reading kind things.......must not cry,must not cry!

I'll post later when I hope I won't feel so like I can't cope anymore

 

[Madjock]

Karen, I'm so, so, sorry to hear you are going through such a tough time. And poor Mattie, how difficult it must be for him. I only wish there was something I could say or do that would help

Please know that you, Mattie and your family are in my thoughts and I pray that your appointments work out for the best for you all.

Annmarie

 

[drennan]

Oh Kazzie you poor thing try and stay positive though for Matties sake as well as your own, believe me I know its easier and said then done but as long as you keep focused it will rub off on Mattie and give him more confidence to carry on also.

I'll be thinking of you this afternoon.

Take care.

 

[eyoreaud]

Oh My Kazzie,

It's all just so sad, poor you and poor Mattie, I admire you for all the stength you have shown for your child, I only hope that you'll get your holiday, by the sound of it you all deserve it soooo much!

Hope all goes well this afternoon Kazzie, I'll be keeping my fingers crossed for you,

I think someone badly needs some {{{{HUGS}}}}

God Bless,
Luv Audrey.
XXXXXXXXXX

 

[signtalker]

I will probaly email you direct, but if you dont know i have a son with multiple disabilities who was expelled at age 4(yes 4) from school,and didnt return for seven months, then i was naive at the statementing system, now he;s 10 and beleive me you soon learn what they can and cant do(my son is fully statemented 25 hours)theyre only allowed to expel for a limited period unless its gone before the board of governers, you have it in writing and youve had a meeting with the governers.

There is a support group for parents(who deal with all the legal side of school) Network 81 you pay £10 and beleive me they know there stuff, they are parent supporters, and i wouldnt tackle the school without them now LOL!!!.(there are also a few websites that give invaluable info, which as a memeber you have to pay for, but i dont mind sharing them with you)

Re medication, if you need any advise PM me or mail, Ritalin is the bog standard, with dexampetamine coming a close second, i can help if you have any ? you might wanna ask, or if you need info on schooling get intouch.
There is loads more i could say but best left for an email, contact me soon
(from a parent who has been there)!!!

jules

 

[Mowgli]

Karen,
You and your DH are remarkable people and hats off to you both for the way you have been coping with Mattie's syndrome. We all do hope that you are able to take your well deserved holiday.
On the boarding front, I did a stint of boarding when I was around 12 & both my brothers were younger when they were boarders. I think my parents felt far worse for "leaving" us - we all had a great time being with boys of our own age and developed friendships - some that I still retain some decades later!
If you can put your feelings of guilt aside (quite normal for any loving parent) perhaps boarding is the answer - as long as you are happy that this school will have your son's best interest at heart.
Hope it all work's out for you all......

 

[Hilary]

Kazzie,

I am so sorry to hear how difficult things are for you all right now. I'm keeping my fingers crossed that your meetings go well today and that you can take the holiday that you all so richly deserve.

I know you will find a long term solution to Mattie's education, even though you will undoubtedly find it tough if he has to board away from home. You have shown how much strength you have in your family by managing so well for Mattie up until now - I have no doubt that you'll find the strength to cope with whatever choices you need to make in the future for him.

I hope the support of your friends here on DIS will help you to feel that you're not quite so alone, even though words seem hopelessly inadequate at a time like this.

 

[Bwalker]

Dear dear Karen, my heart is just breaking for you and Mattie and your whole family.

I don't know what to say except that you'll be in my heart and my prayers. Life is certainly difficult for you right now and I'll be praying that you'll find comfort in the decisions you make.

There's no doubt that you have placed Mattie's needs before your own so even at the risk of sounding too cliche-ish, I'm still going to tell you how wonderful you are and how fortunate Mattie is to have been you and your husband as parents.

God be with you.

Aloha,
Lorraine

 

[Mrs Dazzle]

Karen - I'm so sad for you and Mattie - and all your family trying to help.

I have a good friend who works with 6-16 year olds with Asperger's so I can perhaps understand a little of what Mattie has to cope with each day

Please let us know what happens and in the meantime I;ll be thinking of you.

Please take care of yourself too.

 

[WDWfan uk]

Dear Karen............ what a very difficult time for you all right now, my heart goes out to you.
And dear Mattie too ......... he shows enormous sensitivity and my friend, if he feels that the weight from his shoulders would be lifted if he goes there, if he feels that is something he could look forward to and that there is a chance to make friends with children his own age and persuasion, please consider Southlands. If he goes there, and it doesn't work out, he surely doesn't have to stay.
It doesn't seem right that he should be excluded from school - the mainstream school just doesn't seem to be able to cope in the way he needs.
Please know that I am thinking about you and wish, just wish that there was something more I could do.

 

[Carol Ann UK]

Dear Karen

Not sure what I can say to help you that hasn't been said by the others. I hope sharing with your friends on the DIS has helped you a little. Whatever you decide, I know you will have done, and continue to do, your best for Mattie. Bringing up children was never meant to be easy (so my Mum keeps telling me anyway), but in Mattie you have a very special unique person.

Carol

 

[Janice]

Oh Karen, dear friend - I am so sorry that you are having these problems thrust upon you, and I feel for Mattie that he feels so depressed at his young age. I cannot offer any words of wisdom or any sound advice, but I do know that you are a wonderful Mum for Mattie and your other children and you all deserve your holiday to recuperate and recharge your batteries.

I will keep you all in my thoughts and prayers, and hope that your meetings today resulted in some positive answers for you.

{{{{Hugs}}}} for you all.

 

[UKDEB]

Karen,

I really don't know what to say that won't sound trite, but I feel absolutely devastated. I truly hope something can be sorted out - both short term so you can all enjoy your holiday, and longer term for Mattie's schooling.

Please let us know how things went today.

 

[Fantasia Sam]

Karen

Ditto to what everyone else has said my friend Thinking real good thoughts for you mate

 

[CarolynU]

Karen, I cannot add any more to what others have already said, but I too am thinking of you and your family. It seems such a shame to me that the sort of schooling which would be right for Mattie is not available at a practical local distance whether that be mainstream or a more specialist school, but I'm afraid that this is not provided at the present time. I think that many others are suffering as you are right now and this cannot be right. You have every right to feel let down. I hope that whatever you decide works out for the best for you all, and I pray that you get that badly needed holiday. Carolyn

 

[Penny12]

I don't know what to say that hasn't been said already

I sincerely hope this all works out ok for you...and for you all.

Best wishes - things will get better soon.