I flaked

B’smom

Active Member
We had a school prep meeting, just to get things in order. I didn’t want to go, after this summer, I wasn’t mentally prepared for it. I hate these damn meetings, they’re always so overwhelming. They’re mostly negative based even when they try to be positive.

We had 7 reps from the school/board (two resource teachers, principal, VP, 3 people from the board), two of B’s respite workers, the behavioural specialist, the case coordinator, a school advocator (new for B and he’s amazing because he knows the system, knows what the school is legally required to do).

I am super thankful that J was able to attend. I am thankful he came despite the fact that I told him he didn’t have too (he typically isn’t able too).
It all seemed ok, we chatted with everyone before the meeting started. But As soon as they asked me how the summer had been, I broke down in tears. I spent the entire meeting trying to numb myself so I’d stop crying. So I could answer, so I could advocate. I just didn’t have it in me.

J stepped up, he answered for me. I’ve broken down in meetings before, it’s rare that I don’t cry at one point. But I barely managed to get a word in. I flaked and I’ve never done that before. I feel like I need a do-over cause nothing was accomplished really. J stepped up, but he didn’t know who anyone was (we switched school boards and hasn’t met any of them other than the respite worker and behavioural specialist).
He doesn’t deal with the in and outs like I do. When they asked who to call when B has behaviours and needs to go home. I cried even more. Cried because I know it will be me. I cried when they talked about him starting school later and leaving early. I cried because I feel like I’ll never get back to work. I so desperately need to get back to something just for me. I cried because I need a break. I cried because I HATE crying in front of people, I hate feeling vulnerable, hate feeling weak.

I’m counting down the days until he starts school. I need at least a couple of weeks to just enjoy the quiet. The mom guilt is real and strong this week. I’ll be ok, just cannot believe I flaked so badly during this meeting. Anyways, I’m rambling.
 

WiseChoices

Well-Known Member
Hugs! Give yourself a break, please. This has been difficult and heart-breaking for you .You are allowed to cry. You are even allowed to lose it .
 

Deni D

Life isn't about waiting for the storm to pass.
Staff member
Yes ~ please give yourself a break. I know the feeling of hating to show any vulnerability. I go into some kind of robot mode in these situations, can't really explain it. But I have seen over and over again when someone shows a bit of vulnerability others step up more to support them because they are seen as more human. I think you did good.
 

BusynMember1

Well-Known Member
You can certainly cry! Please don't feel bad.

Does the Canadian school system have any services for children of all types with special needs? We have that here and, trust me, especially in high school, Kay needed them. Are there any private schools for difficult children? If so, are they affordable for you?
 

JayPee

Sending good vibes...
Our fear of the unknown and our fear of being wrong create most of our conflict and anxiety.

Right now you have the weight of the world on your shoulders. Fearing you’re not doing enough, giving enough, fearing you won’t make all the perfect decisions, fearing you won’t explain enough of B’s issues and behaviors and therefore you will be responsible if he doesn’t get the proper care. When we feel stuck and experience feelings of failure, lack or limitation it’s often because of the unconscious limitations in our own mind.

It seems you are trying to stay in front of these feelings and it’s wearing you down.

Try as hard as you can to increase your daily intake of calm and stillness.

Remember the reality is that whatever you are looking for is at the same time looking for you.

I believe you will find the right answers to help B. It may be trial and error but I think right now you are exhausted and depleted.

Be kind to yourself. Find some quietness deep in your soul. You will be no good to yourself or your family if you get sick.

I will keep you in my prayers.
 

Copabanana

Well-Known Member
just cannot believe I flaked
You didn't flake. This is a stress response. You have been traumatized. This is a bodily response. You are holding so much in you, that there is no place for more. You asked of yourself the impossible. To take in more. It's not possible. Think of a sponge that is saturated with water. Or a towel. Did you ever make a flood on your floor and try to mop it up with a towel. And the towel reaches the point where it will not hold one more drop? That is what happened to you.

I have been in these meetings. They are highly stressful. Even if you've been at the beach in the Bahamas for a year and come back happy and rested--these meetings are too much.

Have you been in the Bahamas lately? No.

There will be time for many do overs. But personally, I don't think now is the time.

Finally, why does B need a shorter day? He needs a longer day! You need respite and school is your respite. The school district needs to come up with aides to be with him morning and afternoon. That is the ONLY thing I think I would fight for now, more. Tell school that he needs the socialization and that it is not workable that he start late and leave early. They are obligated to educate him during the regular school day. If they can't or won't he needs a special placement at a non-public school that they pay for, and they transport him there. I can't believe that Canada is that different than here, in these matters.

The absolute priority now is YOU. Your healing. First all this pressure cooker stress has to be minimized, however possible. And second, there needs to be time for you to recuperate. I suggest that you start a thread every single week with the intention to heal, and ask all of us to support you. Now that I think about it, maybe there needs to be a separate forum for the rest of us to be supported to heal. Let's think of a name. What about Healing Ourselves? But I think we can do better.

And each of us, all of us, as part of our time here, can dedicate our time not just to coping but to healing.

You did great! Really. You stayed in the game. Let any one of those other people try to take on what you've been handling all of this time. You are a hero. But now it's time to rest. I am so glad you had the support and assistance of the advocate. He sounds kind!
 
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B’smom

Active Member
Here I go again, crying but for a whole different reason. Thank you all again, thank you for your kindness, for your support. Thank you for your time, thank you for helping set me straight.

Does the Canadian school system have any services for children of all types with special needs? We have that here and, trust me, especially in high school, Kay needed them. Are there any private schools for difficult children? If so, are they affordable for you?

They have what we called an Educational Assistants (EA), I think the states call them a teachers aid? They’re usually people with a background in disabilities. He will have constant support with a 1:1 and they are talking about making him a 1:2 (two EA to him) because of his severe aggression and violence. But they have to apply for funding. They’re not really sure what they’re going to do because they don’t really know him. We switched school boards (Catholic to public) when he was kicked out of the treatment program (residential) in May of this year.
I recently looked into boarding school (nothing private in our area) but it was $54-55,000 a year Totally not in our budget. It sounded perfect for him though.


Remember the reality is that whatever you are looking for is at the same time looking for you.

I absolutely love this! Thank you, I think I’m going to make this my new mantra. Help keep me focused!

Have you been in the Bahamas lately? No.

I think going to the Bahamas sounds like a fabulous idea though


Finally, why does B need a shorter day?

For many reasons,
His sensory issues- their hope is that coming in after the bell, after the children leave the hallways that it will be calmer for him. He won’t be so sensory overloaded. Same with the end of the day, that all that sensory will make it too much for him to handle.
B that he can’t handle a full day of school. Which I don’t think he can but I’m not given much of a choice in that sense.

The government gives us some funding for respite. Funding I’m NOT allowed to use during school hours because school is responsible for him during those hours (915-330). But then I have the school saying they can’t handle him and he cannot handle it the entire time. I am currently fighting this with our program coordinator and MPP (member of parliament-like a senator maybe in the states? MPP is elected by community). It really makes no sense.

And honestly, because they can. They can legally shorten his days. They can actually expel him from school and send a teacher a few hours a week to teach him at home. As in Ontario, it will be my responsibility as a parent to care for him during those hours.


Now that I think about it, maybe there needs to be a separate forum for the rest of us to be supported to heal. Let's think of a name. What about Healing Ourselves? But I think we can come up for a better name.

I like this idea. I’m not really sure how to heal, to be honest. When B was in residential, it felt like I could breathe again. We dropped him off Monday mornings, I did a session with the social worker there on B. On Wednesday evenings, we did a family group play session (usually a game) and then we picked him up on Fridays at 230. He’s be home on weekends. It was amazing, I felt like we were all making progress and then the rug was pulled out so fast.

My health team has free walk in counselling on Wednesday’s. I plan on going in when B starts school. Hopefully that will help with everything
 

Copabanana

Well-Known Member
The government gives us some funding for respite. Funding I’m NOT allowed to use during school hours because school is responsible for him during those hours (915-330). But then I have the school saying they can’t handle him and he cannot handle it the entire time.
In the US parents could fight the district to provide an aide to watch him in school during these hours that he could not tolerate the stimulation of the classroom setting. But the reality is most parents don't fight. They don't know how to begin.

You have done a tremendous job advocating for B.

I guess the point I wanted to make is that you have to come first in at least part of your life. You need the respite of the school day. You want to work. You need to rest. What about laying down with a book? Or spending some time drawing or painting or knitting or gardening? Or walking outside with not a thing on your mind.

This is so clearly a medical issue for B. It feels so, so bad to be caught in this alternative universe where the government pretends that they don't understand English.

I think the walk-in counseling is a great start.
 

Deni D

Life isn't about waiting for the storm to pass.
Staff member
His sensory issues- their hope is that coming in after the bell, after the children leave the hallways that it will be calmer for him. He won’t be so sensory overloaded.
I know about the sensory overload. Lucky for us by the first grade my son was in an out of district school placement where they all knew how to keep things calm for the kids. This was a school for special needs students who where high IQ but had emotional problems. The school was paid for by the local school district because the local school district could not support my sons needs to be able to attend and pay attention. There is a law here stating all are entitled to a free and appropriate education.

But for other times, like parties and such I found if we got their early before there was too much going on my son did well. By the time everything was rocking and rolling he was acclimated well enough. I wonder if they would consider doing the opposite of what they are proposing at least for the start of school. Also with my son, no structured time was a problem, recess and gym to be specific. I don't know how you handle that in a regular school district without your son feeling excluded. When we had discussions of moving my son back into the district school they wanted to put him in a conference room by himself for lunch. He never went back in district. You have and advocate, right? The advocate should be able to influence the school district. B needs a chance to thrive, no matter his limitations. I don't know anything about the laws and special needs schools in Canada so I can't offer any suggestions.
 

Copabanana

Well-Known Member
I got confused who I was posting too. I suggested these resources for shiggins in Australia but I got confused and now that I have them, I might as well post them here too.

The Lions Foundation of Canada Dog Guides is a national charity dedicated to providing Dog Guides to Canadians with disabilities at no cost. Its Autism Assistance Dog Guide program, founded in 2009, trains Dog Guides for children aged 3-18 with autism spectrum disorder.

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Crayola13

Well-Known Member
I read another article today about essential oils for sensory processing and ADHD. You might want to research it online. When it comes to my headaches and sinus problems, essential oils definitely work. Is B sensitive to smell? Do you think it might make the situation worse? Lemonlimeadventures.com tells about using essential oils for sensory processing and aggression. I would definitely check with the doctor because I don't know if this could make things worse.
 

BusynMember1

Well-Known Member
My suggestion is to give this to the medical/mental health community.

This is too large and important to take advice from non professionals. It really should be taken up with experts. Remember, none of us have been able to fix our own kids. We can't fix yours. Sure wish we could. See a Neuro Psychologist and get advice from him or her if you can.

Wishing you the best.
 

B’smom

Active Member
My suggestion is to give this to the medical/mental health community.

This is too large and important to take advice from non professionals. It really should be taken up with experts. Remember, none of us have been able to fix our own kids. We can't fix yours. Sure wish we could. See a Neuro Psychologist and get advice from him or her if you can.

Wishing you the best.

Been there (neuropsychologist) he gave us all the same suggestions we have been given in the past (processing time, quiet area, etc). He gave him a couple new diagnoses and sent us on our way. Mental health services won’t touch him because “he presents like someone with an intellectual disability” (neuropsychologist’s words) and intellectual disabilities won’t touch him either because he doesn’t have one. He really is falling between the cracks. I know no one here can fix him, the professionals can’t even seem to help him. When he was kicked out of residential services, our coordinator asked if they had any suggestions. They had nothing, they said nothing they did helped. Our coordinator was looking into a different placement further away but I don’t know if we can do that again either (driving back and forth up to 3 times a week) 2+hours. But we continue to advocate because it needs to be done. I was just more frustrated with my inability to advocate at the meeting.
 

BusynMember1

Well-Known Member
I am sorry. It sounds hard to get help there.

Try to be good to yourself and get as much respite as you can. If God is in your life, lean on Him.

It is hard to be the parent in a room full of professionals.
 

Copabanana

Well-Known Member
B'smom. I am forgetting. Does B have periods when he seems okay? Where he is calm and has self-control? I know he is very bonded to you, but then some time ago, that changed. How is it now? Does he have any physical idiosycrancies either in his appearance or limitations or health?
 

B’smom

Active Member
Does B have periods when he seems okay? Where he is calm and has self-control? I know he is very bonded to you, but then some time ago, that changed. How is it now? Does he have any physical idiosycrancies either in his appearance or limitations or health?

He has periods during the day when he’s calm and seems to be able to control himself. When he’s in school and there’s structure and routine, it’s somewhat better but anything can set him off. But he’s very inconsistent, you can ask him to do something one day, and he’s fine. The next day, that same request will set off a two hour meltdown.
I think him being home with me 24/7 changed it. I’m just always the “bad guy”, there’s no one else to be the bad guy.

He looks like a typical child. When he speaks, you can hear the apraxia so I that typically tells people “something isn’t right”. He walks “funny” because of his Dysapraxia (I believe that’s the American word/diagnosis for it). Basically it’s the clumsy child syndrome.
He gets into these fits of laughter though, for what appears to be for no reason. I hate to say it, but it creeps me out He has Obsessive Compulsive Disorder (OCD) according to some doctors, so things have to be set a certain way, he repeats words over and over again (in 3’s) when he’s upset/angry “ok ok ok” “I know I know I know” etc. The neuropsychologist said his ability to process change is so low, it cannot be compared to the general public.

He used to suffer from constant strep infections. We had his tonsils removed and he’s been fine since. I have brought up the possible diagnosis of PANDAS/PANS but the response I get from all doctors is that it’s controversial. Even the neuropsychologist said it’s a controversial diagnosis but it could fit what’s going on. I emailed last week and finally got a response today. He also mentioned that childhood disintegrative disorder fits what is going on but it was removed from the DSM. Told me to focus on the findings vs the labels. Told him without a label, I cannot get intervention. He told me he’d try to fit me in with the person working under him. Which I guess is something. It’s still over an hour away. He said I’d probably be able to find a doctor who would diagnose him with autism but that so many other diagnoses are better to explain what’s going on.
 

BusynMember1

Well-Known Member
BsMom, he sounds autistic. In the U.S. I am almost positive he would get this diagnosis. From apraxia to clumsy child to impulse control issues and anger, I think it would be seen as Autism Spectrum Disorders (ASD). Can you somehow afford to test him in the U.S? Would a diagnosis from here matter in Canada?

Trying to brainstorm for you.
 

B’smom

Active Member
Can you somehow afford to test him in the U.S? Would a diagnosis from here matter in Canada?


I don’t know, that’s a good question though. One I’ll have to ask around about. I don’t know if it would be financial possible with the exchange rate. Definitely worth looking into though. Thank you for the suggestion
 
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