Developmental disorders/learning disabilities/genetic syndromes & more support group

[sun]

welcome 24/7

Essie: hope you feel better soon... I'm the sickie in my house, and G won't cuddle! he's too darn busy

we have our initial appointment with the geneticist tomorrow... more bloodwork and I'm hoping nothing shows up. or at least if there is something, it's really minor. it's strange, but I feel very uneasy about all this testing.

Yes we declined the genetic blood work after the initial testing (for things like fragileX, etc). The tests were very stressful for him and if they had by chance found something (but they were pretty sure they wouldn't) then it wouldn't really change anything. So we decided not to do it.

 

[sequeena]

I am the opposite, I am keen to see what, if anything to shows up in the genetic tests. I wonder how long it will take for this blood test to come back. I still can't get a urine sample from him and the hospital have stopped giving out the pads and syringes

 

[bananabump]

When Leo had his genetics blood work done it took about 3-4 months before we got the results x

 

[sequeena]

When Leo had his genetics blood work done it took about 3-4 months before we got the results x

Oh typical, there was me thinking a week or 2

 

[bumpin2012]

I wonder what the wait time here in canada will be. that will be something that I will be asking about tomorrow. hubby is also very keen... strange, because its be a struggle to get him on board with every other assessment. it worries me, because if there is something there, im going to worry about the impact on the baby thats baking, as well as G's future. it never occured to me that Bug may also have the issues that G has.

 

[bumpin2012]

sequeena: how long have gou been waiting?

 

[sequeena]

About a week and a half

 

[sun]

I wonder what the wait time here in canada will be. that will be something that I will be asking about tomorrow. hubby is also very keen... strange, because its be a struggle to get him on board with every other assessment. it worries me, because if there is something there, im going to worry about the impact on the baby thats baking, as well as G's future. it never occured to me that Bug may also have the issues that G has.

Our standard genetic testing came back in about a month. The more intensive testing (that was to test for rare genetic issues/deletions etc - which I think is what you're referring to) would have taken a few months.

 

[justhoping]

myself, my 18 yr old daughter and my son...

I am in the autism spectrum..

I used to rocked back and forth and flap my hands for hours on end. I forgot about the flapping hands..my mom just reminded me.i wouldnt let anyone touch me and till this day have to remind myself that its ok, I had problems looking in peoples eyes and to this day still have problems doing that at times. Texture where hard for me as well and still are...I would be in a dream world and literally have to be shaken out of it..not normal day dreaming and i was several speech delayed but not speech therapy back the, im nearly 42..i did have alot of therapists working with me...an school worked with me..

I am now with alot of work a nurse Damn proud of it as well...
Just telling you because i know you all worry what will the future bring for my little one..
well with support it can bring wondrous things

my daughter speech delayed, wouldnt look into eyes, always preferred not to interact and delayed with learning..
couldnt explain what she was thinking in order when she did speak and you really had to break stuff down for her to get it...textures and loud places where hard for her....and most kids felt how awkward she was...i used to cry so much over that....
she did get left back one yr but has finally graduated high school and is now in college as disabled so she is allowed certain help that most dont use and has an aide as well..she also has repeated words since about 2..still does at times.

my 6 yrs old.....was talking 18 words at 1 yr and then all the sudden stopped talking...couldnt express himself....so he had speech and ot therapy and he also doesnt like alot of interaction..doesnt like to be touched much..but is not as severe as myself and my older daughter..

its a long road but anything is possible and these kids are the most loving kind hearted kids around...
to me nothing is really wrong

xx

 

[essie0828]

Bumpin hope the tests go well and hope you feel better to hun. Hope you get good news FX'd.

Sequeena hope the wait isn't long for you and T. FX'd for good news.

We have Hayleys eye check up tomorrow to see how the patching has helped. Hopefully surgery is still off the table and her eye muscles have gotten stronger.

 

[essie0828]

myself, my 18 yr old daughter and my son...

I am in the autism spectrum..

I used to rocked back and forth and flap my hands for hours on end. I forgot about the flapping hands..my mom just reminded me.i wouldnt let anyone touch me and till this day have to remind myself that its ok, I had problems looking in peoples eyes and to this day still have problems doing that at times. Texture where hard for me as well and still are...I would be in a dream world and literally have to be shaken out of it..not normal day dreaming and i was several speech delayed but not speech therapy back the, im nearly 42..i did have alot of therapists working with me...an school worked with me..

I am now with alot of work a nurse Damn proud of it as well...
Just telling you because i know you all worry what will the future bring for my little one..
well with support it can bring wondrous things

my daughter speech delayed, wouldnt look into eyes, always preferred not to interact and delayed with learning..
couldnt explain what she was thinking in order when she did speak and you really had to break stuff down for her to get it...textures and loud places where hard for her....and most kids felt how awkward she was...i used to cry so much over that....
she did get left back one yr but has finally graduated high school and is now in college as disabled so she is allowed certain help that most dont use and has an aide as well..she also has repeated words since about 2..still does at times.

my 6 yrs old.....was talking 18 words at 1 yr and then all the sudden stopped talking...couldnt express himself....so he had speech and ot therapy and he also doesnt like alot of interaction..doesnt like to be touched much..but is not as severe as myself and my older daughter..

its a long road but anything is possible and these kids are the most loving kind hearted kids around...
to me nothing is really wrong

xx

Hi Welcome and thanks for sharing your story.

 

[bumpin2012]

Thanks Essie poor little guy Hayes being blood drawn. he's a 4 person job! I'm amazed at how strong he can be... they figure it's going to be a few months before we have any results, and if anything comes up they will be referring us to a geneticist in Saskatchewan when we move.

hope things go well for Hayley's checkup.

 

[Peanut78]

Deleted

 

[justhoping]

oh wow, sounds like they know what is wrong but cant be bothered...shame on them!!

why shouldnt he be in mainstream, expecially if he does to all those things in the other school and at home, to me it sounds like there letting him go aimlessly cause they couldnt give a rats ass to give him a gentle nudge of love...

i would be complaining to whomever it is that needs it as this is her child, he deserves what all other children get..

can she sit in on some classes and see what is exactly going on? Maybe then show them how to deal with it or if she is in the class it will make them deal with it..


my heart goes out to her

I know she doesnt know me but please send my hugs

 

[essie0828]

peanut

I agree with justhoping. I would be asking to sit in and see what exactly is happening as his behaviour is uncharacteristic. Hopefully someone at the school will take up the job of helping him adjust. Mabey try getting a teacher to take special intrest in him. I know it's easier said than done but it may be worth a shot. I hope you both find a place that Theo is comfortable and prospers.

 

[sequeena]

Hey sweetie I'm glad you posted here too I would be demanding to know what they're going to do to resolve this. If he's fine at home I doubt it is your problem tbh. It's their responsibility to look after every child in their care and make allowances for their 'differences'.

I hate that a lot of attitude towards our children will be to just give up on them as they'll never 'learn'. Well no. We're there fighting their corners

 

[sun]

Peanut
I have found that amazing programs and teachers and assistants exist out there, but also that there are huge holes in some areas where our kids can get lost. Even within the same school where one year it is fabulous and next the teacher just has no idea what to do or sees the child as a "problem child" and basically just tolerates them until the year is over. So sorry you are dealing with a school like this. Have you spoken to the directors of the school, or the people in charge of special needs for the school or board? I can't quite remember the details of what I read last night (didn't have time to respond) but I would definitely start there. We've only been in full time school for 3 months now and already I can see how much of an effect a positive (or negative) school experience can have on a child. I recently took my son out of school for the afternoons because the full days were too much and the afternoons with so many kids was just overwhelming. It's only been 4 days and he's already happier. The school doesn't like us "making our own hours" but they are talking from an overall policy and group organization point of view, whereas I am only focused on providing my son with the best experience possible. So I have decided I will do what is necessary and be one of "those" mothers if I have to. Please don't think it is your son's or your fault! You all have to work together and if they aren't willing to do their part then it won't work. Hugs to you xox

 

[justhoping]

^^ definitely what she just said...

I wouldn't be where I was if everyone didnt work together..they maybe telling you there working together but obviously there a link in the chain missing. my daughter also wouldnt be where she is now if we all didnt work together..She got left back BECAUSE a teacher kept saying she would be doing what she was supposed to be doing with her but later found out, that was not true at all.

(hug)

 

[RachA]

welcome 24/7

Essie: hope you feel better soon... I'm the sickie in my house, and G won't cuddle! he's too darn busy

we have our initial appointment with the geneticist tomorrow... more bloodwork and I'm hoping nothing shows up. or at least if there is something, it's really minor. it's strange, but I feel very uneasy about all this testing.

Esther had a blood test done for the geneticist and it came back showing something odd. I wasn't 100% happy her having it done but now the results have come back (oh and I were tested and I show the same abnormalities) I feel ok with it. We have been referred to the geneticist to talk through the results but the waiting list is huge so the talk won't happen for 12 months +

 

[bumpin2012]

wow! 12 months to TALK about the results! my mind can't even process that!


peanut, I didn't get to read your post before it was deleted, so I have no advice, but still sending virtual