Needing to vent

[Juliep_coupons]

I am having a lot of problems trying to make everything right and I don't seem to get anywhere!!

My daughter has a condition that creates tumors. She has 5 brain tumors, Sensory Integration Dysfunction and most likely ADHD (trying to get her evaluated). She is in grade 4 and use to absolutely love school! She would cry if she was sick and had to miss school. Now its the total opposite! She is crying every night now because she doesn't want to go to school. She thinks everyone in the class hates her and she never has anyone to play with. She has found kids in grade 2 to play with and rarely someone in grade 3.

She has been going through so much and I don't know what to do for her! She is afraid for me to talk with the teacher because she knows some of her behavior has been getting her into trouble. Her impulse control is terrible and she does things she knows she's not suppose to do but can't help herself!

We have tried for a referral to CPRI but the doctor didn't send info and they didn't let me know and after about 7 months of waiting (I was told it normally takes a year) I called to find out where we were in the list and we weren't on the list at all and no one bothered to let me know! So now I have to do the application all over again. Our family doctor is on Maternity leave till March sometime and its really hard to get into the doctor taking over patients. And to get her evaluated without a doctors referral will cost over $1,000 close to $2,000 from what I hear. I don't have that type of money!

I wrote the teacher an email to see if there was a way to have a buddy for my daughter that would be willing to play with her sometimes and to help her self confidence and try to help her. I don't know if this is the right thing to do I just don't know what to do for her anymore!

She use to be such a happy little girl and now she is always so emotional and wishes she was sick so she wouldn't have to go to school!

I am moving to a smaller town in the new year for a new start and I am really scared this is going to happen again!

Anyone have any ideas what I could do?? I am a single Mom and I am starting to feel like I am losing it! I just want things to be easier for her. And I don't know how to do this!!

[sheetsofemptycanvas]

Oh honey, I feel for you... although my son's problems aren't as severe he still suffers from mental illness and life is so hard for him. Getting anyone to help is next to impossible. I can't offer any advice as we are still on the quest for some help but I can offer you hugs and prayers!!

[glowworm2k]

I am so very sorry to hear about your daughter's troubles.

Does your school have a big buddy/little buddy program??? I went to a school with a program like this for a couple of years, and they used to assign buddies, linking a conscientious grade 7 or 8 student with a student in the lower grades who had special needs or needed extra support. The older buddy was responsible for keeping an eye out for the younger buddy at recess time to make sure that s/he wasn't being picked on. They normally checked in on them at the start of recess, said hi, and would sometimes be a playmate for part of the recess if the younger buddy wanted to play on the swings or do jump-rope (do kids still do jump-rope at recess??? I feel old asking that!). The older buddy also got a free pass out of class once a week for an hour or two to do activities or give extra school help to their younger buddy. I remember it being anything from doing storytime with them to helping them finish a page of math problems. Getting your daughter into a program like that (assuming they still have such things!) wouldn't solve everything - far from it I know - but it would at least ensure that she has a few times to look forward to in the week and that there is an extra set of eyes looking out for her in case the other kids are being mean.

*Big hugs to you both*

[KrazE]

I can tell you, from my experience, that small town schools have a much better support system for kids than any city school. They pull together quickly, they are usually a much more supportive group, and they are so much more helpful to each other; you may find that the move is the best thing you've ever done!

[ninna]

I'm sorry to hear of your troubles. It is frustrating to think you will get some help only to find out that the help is going to take A LOT longer to arrive. The wait list for CPRI service is horrendous, it's true and your doctor ought to be horse whipped for dropping the ball. Sorry if that offends people, but my god. That should never have happened.

You mentioned difficulty with impulse control and sensory difficulties. CPRI offers a program called "The Brake Shop." It's targeted mostly toward families/kids with Tourette's syndrome but is also useful for the issues you mentioned. Waitlist IS horrible. BUT-- the good news is, they post videos etc online and you can view those for free for helpful advice on how to support your child. I think there are both parent AND child videos to view. Here's the link to their home-page: http://www.cpri.ca/content/page.aspx?section=26

Here's a link to a brochure for the 6 week parent program they offer. I believe it runs 1X week in the evenings.

http://www.cpri.ca/uploads/section00...er-general.pdf

It's free and I'm sure you'll find it helpful even if it's just to find out about other supports available to you and to get you in the door to finding more help specific to your case.

Also in London that may or may not be useful to you:

1. Thames Valley Children's Services has a program called "Let's Talk." It runs every Thursday morning from 9:30 - 11:30am at the Thames Valley Children's Centre (779 Baseline Rd). It's a drop in support group for parents/caregivers of children with special needs. Registration is not necessary.

2. Vanier Children's Services offers the "Friends for Life Program." It targets kids ages 8-12 who may worry or be anxious and teaches them how to increase emotional resilience and problem solving abilities. Not sure if that's a "fit" for your daughter's issues, but worth checking out. I haven't used this one before. Call their intake department for more info: 519-433-0334. Vanier Children's services may also have other programs that could be useful or they could tell you where else you might want to look.

As for the school stuff, other posters have mentioned having an older mentor who watches out for your child at recess etc. Recess is probably extremely stressful, especially if your child is saying the kids are being mean to her. The teacher needs to be aware that there are issues because awareness is the first step to solving the problem and it shows the teacher that you are an involved parent. That being said, see if it might be possible to have a day or two per week where your child is allowed to be a "helper" either in a kindergarten class or at the library or the office or where-ever. This alleviates some of the social strain recess causes AND gives her something she can feel proud of-- a way that she can be a helper to someone else, this boosting her own confidence.

Good luck!

[gracesmommy]

i think what nina has suggested - to see if there's a way your daughter can be a helper in a jk/kindergarten class or the library is a fantastic idea. i was bullied alot in elementary school and got to be a 'helper' for the secratary on recess sometimes and it was really a big help. *hugs*

[gspmamma]

I feel for your daughter. I think getting an older student to be a buddy would be a great idea.

Both my sons have special needs and one is ADHD/ASD. For him it was a two year process of getting him evaluated. It finally took me putting my foot down with this doctor and demanding to see a specialist to finally get a full diagnosis. One thing you can do because your daughter is in grade 4 ask the school to get a psychological evaluation done. This will not cost you and it is your right to ask for this. (my oldest is developmentally disabled but high functioning and this is how it was found) Even with the specialist my youngest sees, the school board still wanted their own done and it was done within 6 months. Most schools will not do this until a child is 9 years old or in grade 4. I was lucky that my kids were in a school that did the fighting with the board to get this done for me. But you may have to make a small fuss.

[ninna]

I feel for your daughter. I think getting an older student to be a buddy would be a great idea.

Both my sons have special needs and one is ADHD/ASD. For him it was a two year process of getting him evaluated. It finally took me putting my foot down with this doctor and demanding to see a specialist to finally get a full diagnosis. One thing you can do because your daughter is in grade 4 ask the school to get a psychological evaluation done. This will not cost you and it is your right to ask for this. (my oldest is developmentally disabled but high functioning and this is how it was found) Even with the specialist my youngest sees, the school board still wanted their own done and it was done within 6 months. Most schools will not do this until a child is 9 years old or in grade 4. I was lucky that my kids were in a school that did the fighting with the board to get this done for me. But you may have to make a small fuss.

^^ That is excellent advice about the psych-ed assessment. Schools don't normally do these until grade 4 because difficulties related to learning don't really show up until grade 4 (often a student can hide any problems til then). By the time a kid hits grade 4, they have to perform tasks that require much more complex skills and thinking and processing and if there is a problem, that's when the difficulty becomes evident.

However, be warned: while a school can be asked to do these, they are costly (a privately funded one costs $1800.00) and time consuming (takes a couple days) and so even from a school's perspective, they usually only assess a certain number of kids per year--usually there is a list they have of kids that they want to assess each year. By the time a kid gets on the list, it's pretty evident that they are in need of the service because of things the teacher has observed and it's pretty good odds that if the school decides to assess (without you having asked for it first), then they've already decided the child is having some issues and will likely need to be identified as exceptional and they just want the paperwork to tell them precisely what the exceptionality is.

Some schools will be fantastic to work with; others will be a bust and it won't matter HOW much you beg for service, they will find ways to stave you off and avoid doing it. It all depends on the administration of your particular school.

OR, they may ploy you with a voluntary IEP as a way to solve the issue and wriggle out of having to complete assessments. Try to avoid the voluntary IEP trap. Because a voluntary IEP is just that- voluntary-- there's nothing saying it needs to be legally reviewed every year like one that has been formally identified through IPRC. (IPRC explained below). Also, if you move or otherwise change schools, there's no guarantee that staff at a new school would honour the voluntary IEP.

What you need to do is get the school to agree to complete a psych-ed assessment, and if the results of the assessment find that your child has some difficulties, it would warrant identification as an exceptional student and they would hold what's called an IPRC meeting. Here is some info on that process:

http://www.edu.gov.on.ca/eng/general.../identifi.html

Once a child has been formally identified and an IEP is in place, it must be updated every year.

Oh yes...and avoid the "behavioural" label at all costs if you can. "Behaviour" is an official identification that can be given to your child but it's basically a "catch all" category and virtually useless in my opinion. In fact, the "behavioural" label is worse than useless; personally, I think it does more harm than good. Teachers see that and think, "disrespectful little brat," or "May physically assault me because they just didn't learn how to be told 'no." Or whatever. But imagine the picture you get in your head when I say that someone has a "behavior" problem. What it really sorta suggests is that a kid chooses to act out or wasn't raised properly, or whatever. It' s my own personal opinion, of course, but I believe that if you have to label a kid "Behavioural" then you've obviously missed the true and real underlying issues that is causing the behaviour in the first place.

Here's the link to the various "categories" of identification:

http://www.teachspeced.ca/index.php?q=node/665

In my experience, the public school board here is very good about assessments and I've not had to fight for service. The "other" school board in this area, however, has been very problematic to work with.

Good luck. Any questions, feel free to pm me.

[HealthcareResearcher]

I hope everything works out, my heart goes out to your daughter.

[katboss07]

Its so important for us women to have a strong female support!!!

[amybhullar]

Hope everything works out!