DownSyn Forum

mellysmom · Posted: November 23 2008, 7:56 PM Post subject:

Ecki,

Melissa likes to stim with her Ty beanie doll. They look a lot like the Groovy dolls.

She has this one baby doll that I bought for her from Wal Mart. I must have bought it around six years ago. ( I've been looking for another one just like it, but they don't seem to sell them any more. They do have other versions of it.) It's one of those cheap $3.00 baby dolls. Well, she has "loved" this thing to pieces. She dangles it while chewing on it fingers and toes. The poor thing no longer has any fingers and toes. It is also missing one of the arms. Oh, and of course it has no clothes. The arms and legs are separated from its soft body; just hanging on by threads. Now that the arms and legs are open cavities, she stuffs pecils and pens through them. We call them the arm and leg extensions. This doll is the most gruesome looking thing you've ever had the misfortune to lay eyes upon. LOL! It's scarier than any creature SYD could have made from Toy Story I. LOL!

I took her to get her hair cut last week. I forgot all about " Baby" until I saw Melissa carrying her into the salon; pencil extensions and all. The hairstylists had a great laugh at that one. Every one was giggling and laughing. ( They ALL know Melissa.) It's so good to have a sense of humor:)

I'll probably get a Groovy Chick for her for Christmas. I think it's time to retire baby before she loses an more appendages.

michelle

LinMac · Posted: November 27 2008, 9:41 AM Post subject:

I had a very interesting meeting to day about Robert.
It was with a dev psychologies. She is going to write a report needed for the education system here that will define what kind of support Robert will get at his next level of schooling, which happens next September.

I raised some of my concerns with her about Robert. She is planning to pay a visit to his pre-school and at home to see him in action.
I felt this woman was very experienced. She hasn't seeing Robert in person yet but she assured me that much of what I am seeing is behaviour of a typical three year old.

She reminded me that a lot is asked of kids with disabilities....I felt after the meeting that I am the one that needs to give my wee boy a break....and to let him be that.....a wee boy!

I also wonder if I am worrying far too much about nothing. I guees time will tell.
She will do the visits over the next few weeks.....I'll keep you posted.

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 8 - DS)

First day at school

Helen · Posted: November 27 2008, 10:09 AM Post subject:

It's nice to know I'm not alone. But hate that others are in the same position too. DS is the creme de la creme of all disabilities. Autism stinks!!!

It's strange. I was told more boys than girls have autism, yet on here, it's about equal. Apparently stats are that there are way more boys with it. Confused

_________________
Helen

Mum to ...
Rachael, Matt - DS & Autism - and Hannah. My gorgeous kids!

Adens mummy · Posted: November 27 2008, 9:50 PM Post subject:

Quote:

had a very interesting meeting to day about Robert.
It was with a dev psychologies

I hope you get some answers Linda

We had a call yesterday we might be able to see a Dev Psychologists next week, if all goes well.

_________________

LinMac · Posted: November 28 2008, 4:30 AM Post subject:

Adens Mommy

I too hope I get some answers. I think I am driving myself around the twist not knowing what is going on! I'm finding I'm hyper with the worry and tension. Am seriously thinking of get some counselling for myself. I feel very off my centre, swing at the tinest of things! Anyone else feel that way?

This psychologist is assigned to the team that support Robert in early services.
I knew she would be making contact to start the formal assessments for Robert going to national school. The assessment reports must be complete by March. Otherwise I would have found a private dev psychologist and had a private consultation. I still might do that but only after this review is complete.

Lets know how you get on with Aden.

I feel I have my running shoes on and am at the start of the marathon race!
Wish me luck!

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 8 - DS)

First day at school

Adens mummy · Posted: November 28 2008, 7:14 AM Post subject:

Quote:

Am seriously thinking of get some counselling for myself. I feel very off my centre, swing at the tinest of things! Anyone else feel that way?

Yes all the time, today has been a good day though.
It’s great you have a back up plan with Private psychologist, that has to be reassuring?

Quote:

Lets know how you get on with Aden

Sorry it’s my other son, Matthew 4years 10mths, I should have been clearer.
Yeah I wish you luck, it can feel like a marathon race for sure.
Some nights I have sat here going over and over all the things (Down syndrome, Aspergers, OCD, quirks, born with x, Arthritis, Tissue disease…..PDD-Nos Sad

)

All the best

_________________

Helen · Posted: November 28 2008, 11:33 AM Post subject:

Linda

It was you, a long time ago, when I was struggling to come to terms with Matt's regression, that suggested to me to get counselling. I took your advice - eventually and started seeing my counsellor about 3mths ago. It has been really useful for me, although hard work, but it's worth it - even though it's bloody expensive!

So I'd say, do it. Look after yourself. And be the best mum you can be to Robert. Sounds like you do a pretty good job! x

_________________
Helen

Mum to ...
Rachael, Matt - DS & Autism - and Hannah. My gorgeous kids!

LinMac · Posted: November 28 2008, 12:21 PM Post subject:

Helen

You made me laugh at the fact that I was the one recommending to you to get some counselling! Now I guess its time I took my own advice! LOL!

I had counselling a few years before Robert was born.
I completed a modified version of the 12 Step program. Its helped me unravel some of my early childhood issues.

Without a shadow of a doubt it was the best gift I have ever given to myself.
And yes Helen it was very expensive.....but the changes it brought to me and my family were priceless.
As for it being hard work....I know from hard experience that from pain comes growth and you can't have one without the other!
I am glad you took the advice and even more glad you are feeling the benefit of it.

I just need to send a text to my old counsellor. He has retired but I met him recently and he told me he is only taking old clients....no new ones.
I'm still hesitating to make the first contact.
Thanks for the kind words Helen and the push.

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 8 - DS)

First day at school

minasmom · Posted: September 01 2009, 6:48 AM Post subject:

Hi there all! I haven't been on in forever, but now that I have a moment I have to say that I am "happy" to see others on here who I can relate to. My dd is getting checked (again) at the end of this month for an autism diagnosis as well. From what I'm reading it may end up being PDD (don't know what the NOS stands for) She matches Melissa's description pretty well, but she is less interactive, completely non-verbal too. I have taken Mina to Gigi's Playhouse, but it hurts being around other kids with DS because she is just SOOOOOOOO different. I have told several people that she fits more in the autism group of kids than with DS. The autism behaviours are the one I have the hardest time dealing with and are the ones holding her back. I just know how intelligent she is but we have spent so much time going nowhere with her speech therapies and such. At least with a diagnosis I know why she is the way she is. So in a way a diagnosis will be a comfort to me, a validation that I knew what I was talking about. We had her checked out a couple of years ago, but I was told that it was just DS. But even now her therapists agree that having her presented before the Medical Advisory Board is a wonderful idea...they are validating me, and that means so much to me.
Thank you for posting your thoughts and stories. It means the world to me to know I am not alone.

HannahsmomUK · Posted: September 24 2009, 3:16 PM Post subject:

it was quite interesting to read through this thread again

incidentally in the UK now a dual diagnosis is being recognised alot more and our DSA have taken this on board and now have a bit on their website about dual diagnosis

http://www.downs-syndrome.org.uk/information/my-child/ds-asd.html

Helen and I are going to the meeting on Sunday to meet up with other parents of children with dual diagnosis and I have to say I'm really excited to be meeting other parents and seeing other children that are in the same boots as me

_________________

Please visit Hannah's webpage read all about her journey
Hannah's Video

mellysmom · Posted: September 25 2009, 4:01 PM Post subject:

I just want to let every one know... I did not post those sentences at the bottom of my posts. I'm talking about the blue sentences written at the bottom of my posts. Example... How to roll a joint, Native American Spirituality Forum, etc. I didn't write those.

I want every one to know because my daughter says my account ( user profile) here has been hacked.

Why do people do such stupid things.

michelle