Global Delvelopmental delay and Speech delay

Jenni - posted on 06/26/2012

hi hun

My daughter is 16 years old she was diagnoised with severe global developmental dalay at 3 and has speech problems she only speaks if you talk to her and then its very hard to understand what she is saying. she is 95% deaf which explains the speech delay.



Her mental age now is about 3-5 years old she is a delight to me every day i know she is different and hate when people stare at her in her wheelchair because she makes noises and laughs loud a lot i normally ask if they would like a photo they tend to leave pretty fast then lol :)



My daughter is hard to care for and she has a lot of complex needs but other parts of caring for her are so wounderfull like at christmas when she waits patiently for santa because she will always believe in him and i avoid teenage strops with her (unlike my other 2 ) its fab when she gets bathed and playes for ages with her ducky and when i see her sleeping at night sucking her thumb and hugging her bears i feel lucky to have her ... i do wish she could be normall sometimes but you know what she just woudnt be her any other way.



she has now been diagnoied with a rare syndrome it doesnt have a name yet and only 2 other children have the same chromosome/ imprinting abnormality .... when im feeling down i read the poem "welcome to Holland" its such a lovely way to explain how it feels sometimes good luck with your child too x



WELCOME TO HOLLAND

by

Emily Perl Kingsley.



c1987 by Emily Perl Kingsley. All rights reserved



I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......



When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.



After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."



"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."



But there's been a change in the flight plan. They've landed in Holland and there you must stay.



The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.



So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.



It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.



But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."



And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.



But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Cherish - posted on 06/24/2012

Hi,
My son just turned 10.He was dx'd w/global DD before he was 2.He was dx'd w/severe autism when he was 2.
I also have issues w/behavior(he pinch's,kicks,bites,hits,throws things,runs away,bangs his head,screams,hits himself...etc).My son gets very aggressive when he is mad,but I think it is because he is still not verbal.

Public is hard.I HATE how people stare and give me advice....When they do that I say "thanks,is that how YOU deal with the behaviors of your child w/autism?" of course they do not have a child with autism so they quickly go away ...lol

Cathy - posted on 06/21/2009

Hi Allison, my daughter is now 7 and is also globally delayed; speech, fine motor and gross motor delayed. She uses a Dynavox M3 augumentative speech device to communicate at school and at home. She was diagnosed with PDD-NOS in 2007. She also exhibits some Angelman Syndrome characteristics although all of the genetic tests have come back negative. Jennifer has been receiving services (speech/OT/PT) since she was 19 mos old. Just today I made up a list of vocabulary words that she CAN say (although needs to be prompted most of the time) to give to her 2nd grade teacher, for the upcoming summer session and for September. I didn't realize how many words she can expressively say and/or approximate until I made the list. There are over 65 words! She really has come a long way.



Jennifer has behavioral issues.....headbanging; slaps self; pulls her hair; throws herself to the floor; bites herself....all when she is frustrated or told NO she can't do something. Even using words like "later" or "soon" is not enough to keep her from having an immediate meltdown. The behavioral consultant at school has devised a plan to curb these behaviors, which has proven to work. However, at home is another story. In September as Jennifer enters 2nd grade, she will be continuing the special ed program in a self-contained ABA class. She's never had ABA before, and she won't be exposed to it all day; only where needed, as per her IEP. The school district has been WONDERFUL and they also will be providing ABA at home and in the community for 1 hour, 5 days a week (afterschool).



Has anyone's child on the Spectrum been also diagnosed with Epilepsy??? Jennifer has "heavy seizure activity" in her brain, and will need to be medicated using Depakene Syrup, dosage is 250mg/5ML -- 3 tsp every 8 hrs. I haven't yet started the medicine as the pharmacy had to order it.

Pat - posted on 06/21/2009

Remember that when a child has speech development issues they really don't have the language to express what they are feeling. Sounds like a "dah" statement, but when managing the day to day behaviors you can easily forget. So when he/she is frustrated about something they can't just say outloud, "this is so hard for me!" - his/her only recourse is a behavior that is inappropriate. The behavior isn't so much a choice to do the wrong thing, as a coping mechanism. My son Dimitri is 18, and I can still see times when the words he needs fail to come to his brain and then he over reacts physically in some manner (not violent, but clinched fists, stomping pacing, leaving the house, and the like). Music is something that helps. Of course now that he is a teenager I have to endure loud rap, rather than the classical or kid songs that used to come blasting out of his room....

Carolyn - posted on 06/21/2009

Thats a good idea Alexandra, wish I had heard of that 10 years ago! Monique just ignore those ' do gooders' who think you want their advise. I had heaps of comments when my son played up when we were out. I was sometimes rude because it frustrated me so much.

Alexandra - posted on 06/19/2009

I was at my neurologists office and he said I should let people know about my Idea..As for my daughter she is 6 years old and she has developmental delay and still has speech problems.. My daughter really has advanced within a year.. I bought her a small recorder and it seems to really help her because she has a incentive. She gets to hear what she is saying and enjoys it or she gets to hear the words that we say or sing repeatedly and learns from it...

Monique - posted on 06/19/2009

My daughter has the same issue. They have labeled her "mildly retarded". She's going to be 6 in November. They say she has brain of a 2 year old. It is very frustrating, because even though she is 6, she still acts like a 2 year old. She still uses a pacifier, and I hate to go out in public because people always stare or say "she's too old for that". But the have no idea that this is the only thing that calms her down. I still have to dress her and deal with her demanding ways, as she knows not what she does is wrong sometimes.

Allison - posted on 06/17/2009

To Lydia and Carolyn. Thanks for your advise. Glad to know other with the same or simular problem . Carolyn I am waiting until James is 7 to get him into after school actitives. Thanks to you all for responding.

Sarah - posted on 06/15/2009

hiya. i have a son with mixed receptive speech and language disorder and is now being tested for aspergers syndrome. alex is 6 and a half. we do have some behaviour problems with alex. at the momentwe are trying lots of different ways of dealing with these problems. its a bit hit and miss, not everything works but we have found a few useful things.

Carolyn - posted on 06/14/2009

Hi Allison, My son is 16 now and has mild/moderate intellectual disability. His speech was very delayed and his comprehension was and still is bad. Since he was little I have involved him in whatever I could, Joey Cubs, sport and social days with school friends. His behavior was shocking but now he is so great. His first school teacher told me to do this and it has been the best advise. He now loves to be involed in anything thats going and his behaviour is perfect. Keep persevering, I know how you feel, believe me but it will improve.

Carolyn- Australia

Lydia - posted on 06/12/2009

Hi Allison my son was diagnosed with global dvelopment delay at 18 months then later with Autisim which is severe his name is James aswell he is nearly 13 years and still has no speech i also have a hard time dealing with behaviour issues especially since puberty has started good luck with it all keep perservering. Lydia - Australia