Monday, 10 December 2007

Boarding school and why i sent C

Why I sent C to boarding school.


C started his school life in the local SLD (severe learning disability) school. From day 1 they couldn’t cope. They would tie him down to restrain him. Or call me up and ask me to collect him early.

The local respite home also couldn’t cope with him and he started at the age of 4 going to a home for adults with challenging behaviour. Hardly ideal. There was nothing else in the county.

After much talking with Lorna Wing and doing a lot of research. I took the enormous decision to send C to a specialist school as he needed a 24 hour curriculum (he needed more than just 9am to 3pm). There I hoped they would be able to help him as he needed more help than I could give him. And as a mother, like any mother I wanted the best for my son, not just maintaining him, restraining him, and medicating him.

I looked far and wide. He was turned down at many places because of his behaviour ( He would knock himself out through headbanging) , so my search became wider. Eventually I found a school, a new school, based on Higashi in the UK that sounded as though it would fit his needs. It took 18 months of battle, but eventually I got him there. The down side was it was so far away.

It was not easy to send C there, to leave him in the hands of others. But I put his needs first over mine. I had this hope in my heart they would give him the tools he would need to help himself with his anxieties. And that hope kept me going, even though my heart was breaking.

Being in a specialist school has given C more opportunities to access things than he would have been able to locally. More specialist input from speech therapists, music therapy, physiologists etc which are few and far between. The terms are shorter and there are only 6 in his class. With 1 teacher and 5 helpers.

I don’t regret my decision I don’t feel guilty and i feel no shame. I didnt 'send him away' because i failed him or couldnt cope. The school has not always been ideal, (but no where would be perfect) they do their best, and parents like me keep them on their toes! I do keep a close eye on them.

C has to leave school at the end of this next school year. It has taken me 2 years to find an adult place for him, and one that will accept him. Thankfully it is a lot closer than he is now. But that is a post for another day.

There are two things you give your children. One is roots and the other is wings --Jonas Salk

And thank you to DJKirkby for my award!

62 comments:

Cathy said...

You have absolutely done the best for C and it can't have been easy for you. What he has gained from a specialist environment and 24 hour curriculum will last for the rest of his life.

Cx

Family Adventure said...

I'm so glad that you fought for him to find a place in a school that met his needs, rather than left him in a school that just wanted to restrain/medicate him. How lucky C is to have you!
I hope this new place will be a good experience for him. Will he be living there, too?

Heidi

Casdok said...

Thank you. Yes he will be living there.As the new place is nearer to me it means i will be able to see him more, which is fantastic!!!

Crystal Jigsaw said...

You are a wonderful parent. The best C could ever wish to have and I am sure he knows that too. You have done and will continue to do your best for your son. Your love for him shines through ALL your posts and I for one congratulate you on your neverending ability to cope with your beautiful son.

Love Crystal xx

Elissa - Managing Autism said...

"There are two things you give your children. One is roots and the other is wings"...

... and I think this can only truly be given with love.

As parents, all we can ever do is our best, and Casdok, your best (and your love) shines through!
xx

Nancy said...

I can only imagine how difficult this must have been for you. But it seems like a wonderful place for your son.

Can I ask you why Jenny McCarthy is a touchy subject ....

belle said...

Congratulations on finding somewhere nearby for your son. It's hard having to send them away. My daughter has just started at boarding school and golly, what a first week we had! But I know it's the right place for her.

Nancy said...

BTW Congrats! on the award!
Truly well deserved! ;-)

PI said...

It must be such a relief to find a follow on school and good that it is closer. The head banging must be very distressing. Is there anything that makes it less frequent?

Casdok said...

Nancy, Jenny McCarthy talks about curing her son. People who are autistic dont want to be cured as that sends out the wrong message. They want to be accepted for who they are.

Pi, yes the headbanging is very distressing for all those around him. Routines seem to work best for him. So when he has to leave school it will be a massaive change of every routine. Something everyone is very concerned about.

BenefitScroungingScum said...

I don't think any mother could have done more for their child, C is so lucky to have you. BG x x

Elizabethd said...

Never ever feel guilty. You have done everything possible for C. From experience, I know how hard it is to find the right place, and often had to go on visits for the children under my care, to help with transition.

bullet said...

You definitely shouldn't feel guilty, it's very evident from this blog that you love and want to help your son as much as possible. Getting him into the right environment to help him was the right thing to do. I'm pleased that you'll be able to see him more soon :).

Jen said...

You're a great mom...I'm glad that you've already found an adult placement for him! And very glad for both of you that it's closer :-)

Thanks for writing this.

ChrisH said...

From where I'm standing you're a dedicated, loving mum who's bent over backwards to try to make society value and respect your son as much as you do.

My nephew is classed as having severe learning difficulties. He also has physical disabilities. every day seems to bring fresh challenges for him and his familiy. They just go on coping and I don't know how. It doesn't help when they, like you, have to battle for the things in life that the rest of us take more or less for granted - like a decent education - and I understand what a fight you have had to get the placements C deserves.

Suzy said...

You put C in the hands of professionals that could help HIM and even though your heart breaks every time you leave him there, he is being helped more than anyone else could do.

You know your son. He approves your choice.
It has helped him expand his activities and his life.

I would kill for a mother like you.

Love,
Suzy

Casdok said...

Yes C is certainly accessing more than i ever thought possible because of where he is.
Such a pity that us mothers have to fight to get what is just basic needs for our children.
But places and funding are limitied, i do understand this. But it dosnt help!!

laughingwolf said...

what a super mom!

grats on sticking to what's best for your son, and blessed be....

Merelyme said...

you are a good mom. we parents often face decisions we never thought we would face.

Ivy said...

Brilliant blog as usual, the only thing that disturbs me is that it sounds like self defense. Have you been confronted with so many insults that you feel you must defend your decision that was really a sacrifice?
If so I am really sorry. Like most parents you do what you think is best for your child and an extraordinary child needs an extraordinary mother to be extraordinary brave. You are the best mother C could ask for.

Christy said...

Putting your son before yourself is something all parents should do. I think it is admirable and you set a fine example for all those around you.

Zoë said...

You're an inspiration Casdok, you show us all that there is always hope, and that anything is possible, even if it takes time and a massive amount of work. You exemplify the power of a Mother's love for her child.

Nancy said...

I understand.. I thought that might have been the reason.. ;-)

You and your son are very lucky to have each oher...

MY OWN WOMAN... said...

"....roots and wings." Why does allowing your children to use their wings generally bring tears to a mother's eyes? The bittersweet lessons of doing what is "right" for your child aren't easy.

Phil Plasma said...

I don't think you should feel at all bad about sending him away, it is undoubtedly better for him as he is with people who have learned how to deal with autistic behaviour over many years, and it is better for you as it gives you the opportunity to live a reasonably sane life.

BBC said...

I imagine that there is no one person on this planet that could care for a person like C 24/7/365.

So the right care center (or whatever) is best for them. I suppose that such a person is trying to any staff though.

I'm wondering, does the staff rotate a lot? As in maybe only working two or three days a week so that it's not so hard on them?

I'm thinking that it would be hard on a staff person to deal with a problem five days a week.

It seems like he would need a staff of about twenty rotating care takers/givers. I'm just thinking out loud.

I hope that you don't take offense at my using the word 'problem' but a fact is a fact.

Casdok said...

Hi BBC, I care for C 24/7 on my own when he is home.
Yes the staff at Cs school do go home at the end of the day, and the staff turn over is very high. In the last 7 years he has had over 14 key workers.Yes some of the staff do find him very hard, and when that is the case, they asign him other staff.
Actually i do take offence as to you calling my son a problem. As he is not, he is just different. But i know what you are getting at! So i will let you off just this once!

Self employed mum said...

You have been able to put your feelings aside and find the best place for C, it leaves you heart broken but you know it's best for him. Courageous thats what you are.

Your posts recently have been fantastic, I have been showing them to my 10 year old son, letting him see how to look at things differently, his 11 year old friend is mildly autistic and it helps us talk about his issues and behaviour, he was so interested in C and I've told him all about him and his esculator riding and stimming and explained we should look more deeply at a person before making fun. It has been a great learning process for us both and I would like to thank you for that. I know this is your whole intention and you are doing a damn good job.
x

lime said...

that had to have been a very difficult decision but i am glad that over the years you have seen that it truly has been beneficial for him. i hope his new location will be equally good if not superior. best wishes to you both.

Don Mills Diva said...

You obviously did the right thing for your son. And thanks for that inspiring quote - it's so true.

Cyndi said...

I can tell (via your blog) that you are an awesome mom and I'm glad you fought to get him where he is and where he will be next year. I'm also glad he will be closer so you won't have to take so many trains & taxis! I'm sending Matthew to a special needs preschool beginning January 2nd. It's 27 hours per week (ABA based) and I am terrifed...I can only imagine how you felt when C was 4. Hugs, Cyndi
http://matthewsautismjourney.blogspot.com/

Maddy said...

I think the nub of the issue as you say is the lack of facilities and choice. I don't think we ever get the perfect fit and I'm sure you have to work very hard to make sure that they keep in tune and in touch.

I'm also very glad to hear that you've found the next stop already. I hope that transition is smooth for both of you - also glad that it's closer.
Best wishes

This is my calling card or link"Whittereronautism"until blogger comments get themselves sorted out.

dawn said...

I've always told you you are a remarkable Mom. I know it had to be so hard sending him so far away. I wish I had your strength sometimes. C is blessed and very lucky

d. chedwick bryant said...

There is an excellent boarding school in our area, and the children start at age 8 I think. It is much better for the families and kids. The kids thrive with the 24 hour care. I have one friend who has a son there and know one young teacher there. It isn't like sending a child away anymore, it is like sending him into his best possible future.

Ian Lidster said...

You deserve whatever rewards come your way, dear heart. You are one of my heroes.

Jade said...

Its good to hear that you've got a plan in place for C when he is released from his current placement. I highly respect and appreciate (for C's sake) your responsibility and dedication when it comes to C's best interest.
You have no idea how many parents I work with, being both parents with kids on the spectrum or "typically functioning" children's parents, that show no interest in their childrens success or safety.

You continue to show grace in the middle of what may feel like a hurricane and I applaud you. You may not see the grace that I speak of, but its there, and many of us can attest to it.
Keep on keepin on girly!

Marla said...

We researched boarding schools when ours were continually not working. We could not afford it and now that time has passed and she does not need it. I am truly thankful for that. I can totally understand the need. I am glad you found a school. Eighteen months is such a long battle!

Little Wing said...

Bless you and your son.
There is a place in Heaven for both of you.
Hugs........

Beck said...

That must have been such a hard decision - but it sounds like you made absolutely the best decision you possibly could for your child. And having him closer next year will be a huge blessing.

Kassiane said...

C goes to Higashi? I visited the American branch this summer & was fairly impressed. A student folded me an oragami crane b/c my foot was in a cast (this is why the no empathy thing kills me, every time I hear it...).

whimsicalnbrainpan said...

C is so lucky to have you for a Mom.

Omega Mum said...

You are, as always, magnificent. Thank you for posting this.

Ms.L said...

I think it takes courage to do what you've done:)

Samantha said...

I love the quote at the end.

Laura said...

What a difficult and loving decision you have made. We all want what is best for our children so that they can grow into the people they are meant to be - you are an amazing person and mom. You have been able to put his needs before your own. May this new arrangement be a blessing for both of you.

HUGS!

Thanks for sharing!

ALF said...

found your site from djkirkby's - just stopped by to say hi!

Angela said...

It is hard that sometimes what is the best for our kids isn't the best for us.

deb said...

I appreciate you sharing this with us/me. The school has not always been ideal but they do their best. I guess that's all we can ask for. I worry about my daughter moving on Sat., I feel sad that she won't be in my life as much but relieved as well.

I don't know if you got the link I left you on my blog but here it is again. This boy is 11, he also bangs his head. The articles are written by the boy's father and he's a wonderful writer.

http://www.theglobeandmail.com/v5/content/features/focus/boyinthemoon/part1/chapter1/

Get Off My Lawn! said...

Roots and wings. I'll remember that.

TheBirdman33 said...

It definately sounds like you did the right thing and are continueing to do the right thing.

His headbanging is life threatening? What does he do? WHat does he bang on?

Casdok said...

Kassiane. We dont have a UK branch of Higashi here, but the first boarding school C went to was based on thier principles.

Birdman33 C bangs his head on the hardest things he can find. He knocks himself out, or can induce a fit.

Tanya Brown said...

Taking care of a non-autistic, non-head banging child is no piece of cake, particularly for a single parent. I can't even begin to imagine what your life has been like in comparison.

You have done a good, responsible thing in looking for schools and environments where your son will be nurtured and hopefully safe without being restrained or drugged to the gills. He is your beloved son first and autistic second or third or fourth, something the rest of the world often may not understand. You have done well by him.

Mary P Jones (MPJ) said...

There is nothing more stressful and difficult than finding the right environment for our children to help them achieve to their individual potential. And as you said, no place is perfect -- it's a constant process of evaluation and compromise. It sounds like you are doing the very best for your son, as always.

Anonymous said...

I am curious what "American Branch" of the Higashi school Kassiane visited this summer as she states in her comment. Since Kassiane is someone who counts herself as an "Autism Advocate" I am surprised that she claims to be "impressed" with Higashi since some teachers at Boston Higashi have been convicted in the past of abusing the students and the parents of Scott Tedeman won a $2million lawsuit against the Higashi School in Boston for abusing their 14 year old son. The articles are readily available on line regarding these incidents. How can that be considered "impressive" Kassiane?

JUST A MOM said...

WOW I am 54 I think,,, great I have to say you are very brave! I sit in such an aray of emotions when I come and read here. I love the phote/poem/picture. I am stealing it if you don't mind.

Hope you have a great holiday.

Foresam said...

In case you're interested, I stopped my son's headbanging simply by giving him more Vitamin C. It might be worth a shot.

Casdok said...

Thank you foresam. i already do give him extra vit C. Glad to hear it worked for you.

Anon, thats rather disturbing news.

Pig in the Kitchen said...

What a hard decision, and so brave of you to make it.
Pigx

Amanda said...

that is a good student/teacher ratio at C's school, its a shame its so far away.
I'm glad you've found a good adult home closer to you.

abstractjenn said...

I'm glad you don't regret your decision. You shouldn't feel guilty or ashamed. You made a terribly hard decision but it sounds like it was the right decision.

xox

*Coop* said...

I think you're an awesome mom for understanding what's best for your son and for being selfless enough to give it to him.

Sara said...

I've been away for a bit but I'm back and reading...must be so overwhelming to try to find the right place and the right thing to do for C