Not Ready to Settle

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Four years ago our family was launched into the throes of mental illness when our then 11 year old son spiraled into a dark and frantic place filled with hallucinations and out of control behaviour.  I can’t believe it has been 4 years – it seems like so long ago and yet I can still physically experience what it was like those long dark days. To give you a better feel for that time in our lives, here is an email that I sent to our then case manager who as an Occupational Therapist surely felt out of her element but who was an amazing listener during that hard time. I thought of taking out some of the email but I think it needs to stand in its entirety. Names are changed for their privacy.

 Mary – I started writing this last week when I was feeling VERY hopeless and desperate. Since then I have heard from Carrie, but I do think all the information in this email is true and I want to share it with you. In no way is anything in this email directed at questioning what you have done for our family – I speak of the “system” in general and I know that you will understand the place it is coming from.  I am fine with you forwarding it to anyone on C’s team that you think would benefit from reading it.

When I was talking with Elaine last week week she said something about maybe this is how C is now, maybe this is his new baseline. I tried to be ok with that – I tried to take that in stride and say, “ok, so maybe we just need time to adjust to this”. But that conversation has not been sitting well with me.

Then when speaking at the meeting at C’s school with Paul and Mr.V (teacher from Unit 5), I said that I would settle for C.regaining even 50% of his functioning – like if he got back to being half as happy, as flexible etc as he was last school year. Then after the school meeting I came home and I cried. Nope, correction, I sobbed uncontrollably. Because I sold him out. Because I sold us both out. And I lied. I don’t believe what I said to Elaine or Paul. I am not ready to give up. I am not ready to settle. I don’t think C should have to settle. And C can’t fight for himself right now – that’s up to us, his parents. We have to believe in him. If we don’t believe in him why should he believe in himself????

I know people who don’t really know C, who only just met him or who know him on paper think I am not being rational – and you know what – I don’t care anymore. I didn’t make it up that (with support) he was going to Cub Scouts and Karate (no support) and on the school soccer and basketball team. I am not saying that I drove him to these things and kissed him goodbye at the curb and he went on his merry way. My bar is not set that high. WITH SUPPORT he was able to go and have fun and make connections with people and feel included. And he had his good days and bad days. But we were able to get back on track and the good far outweighed the bad. He was INCLUDED in his community school in his regular classroom and he was LEARNING. yes he wasn’t learning at the rate of the other kids but he WAS learning. He didn’t sit and sort spoons or watch movies all day or learn how to make sandwiches (which can be done at home). He was an active learner in his classroom with his same age peers.

And now that is gone. People seem to think that is not such a big deal. It’s HUGE!!!!!!  He has REGRESSED! In all my years of working with children, that would be a HUGE red flag. A child starts losing skills, starts falling apart and experiencing extreme distress and discord in the home, school AND community – that is HUGE. He only goes to school for an hour a day, he hardly ventures outside the home and we are drowning here at home.

The truth is everyone seems to think he has Bipolar. And it seems like this is a big deal but no one has made the diagnosis so no one can really comment but everyone gives me one of those deep and heavy looks when we just broach the topic. And I think I would be smart to be scared. But I’m waiting before I allow myself to even go there. But from what I know (and I know too much to not be terrified) this is going to be a long hard road, particularly in light of all of C’s co-morbidities.  And its funny because every time in the past when we got a diagnosis people would say “but its just a classification, he’s still the same kid he was before the diagnosis” and yet WITH the diagnosis you get services you otherwise never could get. BiPolar is a very serious mental illness and if he has it, wow, thats a lot for us to deal with – but the amazing part is – I am here in Windsor with him all day everyday doing this ON MY OWN!!!!!!  If he has it next week then he has it now!

But right now I am here with him in Windsor doing this on our own and

We wait

No one thinks its good for him to be home alone with me

But here he is

We don’t know why this happened

I have no idea WHAT TO DO!!!!

Am I seriously being told that there is nothing that can be done, that there is no hope???

That is what it feels like

I feel so confused, alone, angry, overwhelmed, lost, scared

IF we understood what was going on with him and we had a plan and we were receiving treatment/intervention INTENSIVELY and THEN he wasn’t making progress and everything stayed the same – ONLY after that would I even be willing to entertain the possibility that we need to start accepting where he is at now.

For me to accept anything less is selling out my son. It would be failing him. When he was 7 years old we were told he might not ever read and that kids like him “never make it out of the {foster}system” and that we should “consider giving him back” and that at the very least we would need to run our home like a “boot camp”.  We could have listened to that advice. We could have let it devastate us and him. But we didn’t. Instead we fought the system (and boy it was quite the fight) and we got to CPRI and look how far he came. Think back to when you and the other OT were trying to complete that initial assessment with C and then to last year when he was able to sit on a peanut and show you his engine and tell you his plan. What a huge difference. If I hadn’t believed in him and brought him to CPRI and Mary if you hadn’t worked with us and believed in him  – we never would have known he could get to that point.

And now, we are still at a loss as to what has transpired these past several months that has launched C to this point – but we have our suspicions and we believe it is a culmination of many things. We know it is not simple. We know this is not an easy road. He had a crisis admission to Unit 5 – everyone stressed that it was not treatment. We GET that. That admission did its job, kept him safe and helped to stabilize him while he was there.  But that also means that in the over 8 months that C and our family has been in the throes of this crisis we not only do not know the etiology of it we have not had any intervention.

We are a loving and dedicated family that is at the end of the rope. We have no more left in us. Our son is mentally ill. We are unable to do this on our own. We have to believe that there is hope. We have to believe that something, someone, can help us. I get that there is a shortage of children’s mental health services in our province. But we can’t let that stop us. We can’t let that keep us sitting in our basement at home slowly losing all sense of ourselves.

Why should C have to settle for this very lonely, unhealthy, unhappy life? His life has never been an easy one and yet he has always been able to find joy in it. He has always found a way to get up and face each day even though it was a day filled with unending challenges. He has fought more than his fair share of the fight.

Its time for the system to step up and help him – we cant do it on our own and we shouldn’t have to. We are thankful for everything we have received and for all the wonderful people who have joined “team C” but day after day, week after week, it is him and I at home – trying to hold on for dear life to what is left of his self esteem and happiness and hope and what is left of our family.

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This entry was posted in Adoption, Advocacy, Learning Disabilities (LD), Obsessive Compulsive Disorder (OCD), Parenting, Sensory Integration Disorder (SID/SPD), Sorting it Out, Tourette Syndrome (TS) and tagged , , , . Bookmark the permalink.

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