Thursday, 17 February 2011

Worst case scenario

C’s head banging has been out of control :(
Being pre-verbal does not mean having nothing to say! C has been trying to tell us something.

Even with ABC chartsfunctional analysis observations – sometimes we just can’t get to the bottom of such massive sensory distress. It is very frightening and frustrating for all as we can’t help him.

A best interests meeting was called to discuss emergency medical treatment and ensure there is a clear plan around what to do – a reactive management plan with a gradient of responses for worst case scenarios. I found it quite tough as it’s a subject people avoid talking about. But this is C’s reality. And the outcome of the meeting was very positive and reassuring. 

Staff now know what a detached retina looks like, concussion, whiplash and induced fits, when to call an ambulance/when not to etc. They will keep C’s health action plan up to date and make him a hospital passport.

Proactive work needs to be continued looking at alternative ways for C to communicate. Intensive Interaction is the way forward I feel for C for this. To keep his environment safe but without isolating him. ‘Engagement in meaningful activity’. C loves the local sensory room but with cuts this is closing (maybe C's home should buy it?). He loves to be out and about so staff have to feel supported and confidant. The staff are the backbone – the reflection on how C is doing.


C needs much support which comes at a high price just to keep him safe and have a life like everyone else. At this time when the LA’s are making massive spending cuts it is very worrying indeed. 

46 comments:

Joeymom said...

Wow. So we should start fund raising to buy a sensory room, yes? Glad the staff seem to be at the ready.

Akelamalu said...

It is all so worrying for you. I do hope you get things sorted out for C's sake and yours. x

kathleen said...

I'm sorry -I imagine how hard a meeting like this could be. There is so much to learn..and unfortunately-budget cuts get in the way of everything. I find it very frustrating that people with disabilities/ programs for people with disabilities are generally the first to experience budget cuts. Being kept safe and having a life-should not ever be a worry. I find myself in a quandary as to what to do .

Looking for Blue Sky said...

No, I would not like to think about worst case scenarios either. Upsetting. Hope you're feeling better now x

Ron said...

I sure hope they find a way to raise the money to buy the sensory room.

Sharing a big hug.....

(((((((( You + C )))))))))))

X

nitebyrd said...

Knowing/thinking the worst is so awful for both you and C. I hope (and pray) that the outcome will be the best scenario for everyone involved.

Debs Carr said...

I seem to have deleted my comment somehow?

Poor C and poor you. I'm not surprised you found the meeting tough. How dreadful that the people who need the government's help most are the first ones to feel the cuts.

Happy Elf Mom said...

Well. This answers the question I have about my child's eye care as he ages. I was just thinking of how to go about helping him get an eye exam this week. Guess that's difficult/impossible and I was *not* missing some golden resource that was out there.

DOGGONE IT but I guess all you can do is keep every little thing the guy does in a notebook for clues. I like the saying "pre-verbal" though... you are assuming it's gonna happen. I hadn't thought to do that. :)

Julie said...

thinking of you both...

Anonymous said...

Sending a hug through the net to you, and positive thoughts for C. I cannot imagine a worst case meeting. It made me cry just trying to, and I am very sorry.

Hope that things turn for the more stable very, very soon.

Yuji said...

It's so tough to think about the bad things that could happen, but important to be ready just in case nonetheless. Here's hoping none of that will ever be necessary. I feel for all the worrying you are going through. My heart is with you and C.

menopausaloldbag (MOB) said...

God these budget cuts when chief exec's of councils are earning in excess of 150k makes my blood boil. C's unique requirements are so challenging and your patience and positivity astounds me in the face of so many barriers. Your heart must break when you can't get to the bottom of what is ailing C. You are an amzing woman, I wish I had half your humanity. X

TherExtras said...

Your last sentence is the very essence of truth. The funding is not just for C but all the staff, you and a ripple to the community.

Barbara

Maggie May said...

It must be so distressing to see your son go through this.
It would be wonderful if enough funds could be raised for the sensory room.
It is really worrying the way everything is being cut & we have to hope it won't affect you and C too much.
You are such a good mum and an amazing lady. You deserve the best.
Maggie X

Nuts in May

Trish said...

It's so hard to think about those worst case scenarios. We had to do this on a smaller scale for the school crisis intervention plan, and I could hardly believe we were talking about some of the stuff that came up.

Hopefully it won't have to be implemented and will actually make the staff more aware of the need to intervene before he gets to that point.

Blessings to you and C.

Kit Courteney said...

Oh I wish there was something that would give a quick and easy answer to all of this. The bloody cuts are shocking when they come to those who clearly need and deserve certain activites.

Thinking of you both :)

astridvanwoerkom said...

I am so sorry C's head-banging is escalating. As a person who only head-bangs on occasion, I cannot relate to the serious danger C is in. However, I want to send out my sympathies, and hope for the best possible outcome for C.

Lilith said...

An emergency medical plan sounds like an excellent idea. I'll have to bring this up next meeting. Hope you are well. Deb

Grit said...

thanks for posting this up on bmb too. living out of the uk for now means i surf through the international issues but lose touch with some of the issues on the ground. your post help put me back in touch. can a fighting fund start to buy the sensory room? what would be the issues in running and maintaining it?

Julie L. said...

Am sorry. It looks like you are beyond upset. :( Wish C could say what is wrong.

Jen, do you know how much is needed to save the sensory room?

Perhaps you could cut and paste and send this to your local paper?

Maybe our community and the community where your live can help you. Can't promise anything, but it might help to publish what is needed to keep the sensory room going. Just an idea.

Gina @ Special Happens said...

A sensory room would be the largest gift. The impact and benefits far outweighing the costs. I hope it works out somehow!

bbsmum said...

That feeling of helplessness is awful, plus the frustration of knowing that whatever is bothering C might actually be simple to put right if only you all knew what it was :(

rainbowmummy said...

OFS they need to get that sensory room!! Damn you to hell cuts! Fund raise or protest time?!

I am so sorry that you and C is going through this just now. Hopefully things will get resolved soon. I wish I knew what he was trying to tell you. I wish I had the answers. I wish I could make this easier.

I hope this is one of those good bad times. Y'know like when a person goes through a bad spell but the result/end is improvement(eg communication).

All my love to you and C xxx

heather@actingbalanced.com said...

Wow - how scary... so far here in Charleston, we haven't seen a reduction in Liam's services, but he's also not receiving nearly what C is... but I know it's happening around us... and it's very scary that the most vulnerable are paying the price for others inadequacies and flawed systems.

I hope you can get a sensory room or at least some components for C and help him through this crisis.

Green Girl in Wisconsin said...

Oh dear.
I think about you two each time they discuss budget cuts--so quick to cut services to the most helpless and needy in our society, but digging in their heels to preserve military funding and corporate tax breaks. We're no further along on this side of the pond, unfortunately.

theconnorchronicles said...

Wow, what a challenge to be going through. Stay strong, and I'm hoping for the best.

Crystal Jigsaw said...

These cuts are being made without a thought of people's welfare. Disabilities don't seem to matter in this country anymore. They're even scrapping the DLA eventually and replacing that. It's disgusting.

CJ xx

therapydoc said...

Thank you for sharing this. Where have I been? Missed it entirely. I'll link over.

Dr. Deb said...

I hope they can get C's head banging more stabilized.

secret agent woman said...

Oh my goodness, what a distressing situation. I hope they are able to work things out to help C.

Ellee Seymour said...

I'm sorry to hear that the sensory room is closing. The home needs to do some fundraising or find a local sponsor to support it.

Angeliki said...

I'm so sorry to hear that. I hope C's head banging stabilizes soon.

jazzygal said...

How very upsetting for you and for poor C too, to be so distressed. I do hope things work out. It was a difficult meeting but had a pro-active outcome.

I do hope they can save that local sensory room. There are some things that cut simply should not apply to. What about Fund raising? Does the UK lotto grant funds??

Good luck...and hugs..

((xx)) Jazzy

The author said...

Well I am no wunderkind despite what my detractors might say and so I don't have any answer other than to say, what to you is pain and distress is only what it is to you. It's not possible to project, you can't I can't but I can say from what I have seen than injurious headbanging is something I have seen close up where you would think from the status of the headbanger that they could reason it is not pragmatic, but that is the world we do what we do and don't always know why ourselves.

Last year during a lecture I was giving I banged my head violently against the wall, it wasn't expected.

Why I did it was probably a world away from why C does, and not the same as why the other guy I reference does, but the fact that I did says something though I am not altogether sure what. All I know is that it needed to be done.

My body is sometimes like a watchspring.

To some extent it is probably more shocking when someone like me or the other guy I mention does it, because it is not expected, non U as Nancy Mitford would have said, it is the discontinuity of that which has the impact.

Attila The Mom said...

Oh I'm so sorry to hear this. Thinking of both of you!

Suburbia said...

Thinking of you both

E said...

What about private fundraising for the sensory room? Have you considered this? I own a development company and would be glad if I could be helpful and give you some recommendations
Have a look and if you want to talk just let me know

www.isabelpratt.com

Lora said...

I hope that C's head banging gets sorted out soon for his sake and yours. It is a sad that the sensory room is closing especially since it means so much to C.

MommyToTwoBoys said...

What a tough situation. My son is verbal now, but still does some extreme things when not being sure how to communicate what he wants to tell us or what he needs. I am so sorry it has gotten to this rough point for you and your son. I really do help you can get to the route of what he needs or get him a way to communicate. I can't imagine how hard it must be for him. He must have so much to say but no ways to say it.

You are such a great mom for seeing it through his eyes, for wanting to do all you can to help him. Sometimes my sons' behavior angers me and I lose sight of that. That he needs something or is having a problem with something. You help me be more patient and understanding.

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Kelley @ magnetoboldtoo said...

after the day I have had, this post just tears at my heart.

Sending all of my love to you and C. As always.

x

Anonymous said...

When my son was in his late 3's his headbanging escalated to a compulsive level. It wasn't just headbanging either, he was slapping or biting himself and wrapping cords around his neck. His sensory issues were out of control and worst of all I could see in his eyes he didn't want to do it but must do it. I could see in his eyes "Help me!" The screaming, the emotionalness of it all and he couldn't even tell me what was wrong because he couldn't talk yet.

Because he had been self-injurious for awhile my husband set up some guidelines of when we would consider medicating him. He was hitting his head really hard against hard surfaces 20 plus times a day and he is a big, strong boy. He even split his lip open and we we still failed to implement our self-imposed guidelines. Because he is only 3 we can't medicate a baby? It was an awful time and we were very concerned that he had hurt his brain. We even had an EEG and an MRI.

Once we started the scary Risperidone, things got better every day and then when his dose was doubled to .25 2x a day he was even better. I never thought I would ever come to this point because I am so into alternative medicine, that antipsychotics are not in my paradigm. But it worked and he has been taking it since October.

Now he rarely headbangs, or slaps himself, we still watch for wrapping things around his neck. His behavior at school is much better but the medicine has allowed the OT and the speech therapy to work and there are conversations going on! It has been months since he headbanged but the last time he did it he was very careful and then said ouch and ran to me for comfort. So the medicine allowed him to feel the pain or something. All I know it works and he is happier.

I certainly am not advocating that anyone medicate their child but we had tried everything including brushing and everything made things worse. Plus I don't know what the deal is but I've tried to find online support or other moms who have kids with autism who hurt themselves and it seems like either it doesn't occur or everyone is in hiding. So I am glad to have found your blog and wish you the best in finding help for your son.

Leisa Hammett said...

Oh, dear. So sorry!

K- floortime lite mama said...

Thinking of you
Sending you tons of positive vibes

Rachel said...

It is so hard when some things are dependent upon funding decisions!

I hope there is a good resolution for this - for his safe communication.... my heart just breaks!

E said...

I am failing a little bit this March,. Instead of the lightness of spring I feel the heaviness of slush and melting snow and mud deep in my soul.
I could use a little bit of your strength right about now Mama Shrek. Send me some good vibes