Monday, November 26, 2012

communa-what...


Here is the deal...communication with Maddie sucks...yes she has some words...some signs...some pec cards...but she needs more...I need more...the frustration level is now hit the roof for both of us...when Maddie comes home from school...and can not tell me how her day was...it is just old...I rely 100% on what the teachers tell me...she enjoyed dancing and singing...thats great but I want more...Maddie cannot tell me if someone is hurting her...and I want to know...Maddie cannot tell her friends she wants to play what they did the day before...so she lays there and screams...I want more and I know Maddie does to...i want maddie to be able to clearly state what is wrong, what she wants to eat and what she wants to do...and the kicker...Maddie's glasses have been the wrong prescription for the last 4 months...and that is simply unexceptable...I would have not tolerated a bad pair of glasses that were to strong...making me dizzy, sick, and eye strain beyond belief...all I can think of is the headaches she must have had...I have not confronted the eye glass place yet...I am still to angry...and I would not be nice...i now i know why she was throwing them...and breaking them...i thought she was just being 3...so now our specialist wants a second opinion and for us to get our glasses from them so we do not have this happen again...if I could give any new parent advice about having a child with Down syndrome it would be...they will crawl, walk, climb and test your patentince; concentrate on communication...get the best speech therapy available...start early and often...and when you think it is nothing expect more...I am reaching out for more speech...I am reaching out for privatized speech...and I should have done it earlier....it is time for more...new goal...Maddie ordering her own meal out and everyone understanding her...no signs, no signals, no pictures...words...clear, concise, and to the point...

7 comments:

  1. For what it's worth, Samantha couldn't begin to tell us what went on at school until the last 2 years, and even now, it's still unreliable. We rely on a communication notebook from her teachers for accuracy and detail.

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  2. Sorry, just wanted to clarify...Samantha is a very good communicator, BUT not when it comes to recounting things from the past or really *anything* other than the here and now. I feel your pain, but I also know it's not likely to be this way forever. :-) Definitely make sure you're partnering with her teachers to get as much info as possible! When we started out this school year we weren't getting communications from anyone. Within 2 days we had that corrected. It's critical that Sammi's teachers and support team know that we rely on them for this information, even what she's working on in OT, PT, ST, etc. (((hugs)))

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  3. We are in the same boat! Although Arina knows enough signs that she doesn't get frustrated about communication because we can always figure out what she wants! But I want more speech! I don't care if it sounds selfish, and don't tell me I'm ungrateful for what she can do! I want her to be able to talk to me, and most importantly, tell me if something or someone is hurting her. She's only been in preschool for a month or so though so I'm going to see how it goes before requesting more speech!

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  4. Right there with you! I tell every mom I meet with a little one to get on the speech bandwagon ASAP! I wish I would have started Sutter at the university program or added additional speech when he turned 1. The improvements we've seen over the last 8+ weeks make me excited but at the same time sad that I didn't do it earlier...it's hard not to wonder if he'd be talking or at least have more words if we had. :( Communication is our biggest frustration and our biggest goal! As for the glasses you're nicer than me, I'd have been on the phone right away and cussed them out...poor sweet girl!

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  5. I could not agree with you more. I read a book when Kristen was first born of advice given by people who had older children with DS. One comment stuck with me regarding speech and the message is so what you are saying. Hit speech hard and early...it is the most important skill. All kids with DS will walk but not all will talk...and talk well. So, that has always been a huge focus and one thing I so tell parents. Kristen really started to blossom at four and take off at five. It is so hard in the stage you are in right now because I remember vividly being there...hearing other kids give detailed accounts of their day but not Kristen. Even now, it is tricky but it is improving slowly all the time. Patience...once again. I promise you...it will come!

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  6. Oooh, I agree, the wrong prescription for her glasses is completely unacceptable! I would be pissed off too!

    And speech. It is the one thing about Ds that scares the shit out of me. We don't have a SP, I go it on my own...So I always wonder if I am teaching Russell right. I know right now as he approaches three I struggle with the fact that he cannot "talk" yet. It is frustrating to me to live in a such a rural area and not have any options available to us. Good for you for seeking out more help with speech! Wish we could do the same.

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  7. I couldnt agree with you more too!!! Avery's speech just started taking off at 5.we are slowly getting there but i want more too!! Icant ask her about her day at school...she cant recall what she did..we also use a communication journal between the teacher and me..i feel so lost so many times..she gets speech two times a week at school and once a week at home..

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