Another visit from the PT and OT yesterday and everything is OK. The occupational therapist says she only needs to visit Ian once every two months and the physical therapist says that she should see Ian only once a month. Guess he's got the motor skills and muscle tone of a baby without Down syndrome.
Means he'll be heading for that cookie jar any day now...
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I gotta be honest...I don't know if it's proper to say congrats, but that's what I'm thinking. In the DS community, sometimes it's like we're not supposed to be glad when something's more "normal" than "typical" DS, but if Ian has great motor skills and good muscle tone, I think it's great! Am I just a pinch jealous, maybe, but I'll have time to get over it during our 3 weekly therapy visits. :o) Sorry, I'm bad.
RK: If I were to be honest, too, I would have to say I hesitated a bit before posting the "good" news knowing others may struggle more than Ian does.
It's tough, isn't it? Knowing that one child is struggling with leukemia where another is doing just fine where another is out swimming across lakes and making movies, etc.
I'm finding it hard to "stay in my own story." Especially since two of Annie's sister had babies within two weeks of Ian's birth. They're all smiles and will be crawling in a few months and... well, you know the rest.
I'm rambling. Hope you feel better soon and sorry about those 3 visits a week. Your therapist(s) must be almost family by now. :)
Wow, that's great! I haven't heard of therapist reducing sessions the first year. The counties we lived in provided weekly sessions up to 3, so that's what we did.
How wonderful that Ian is doing so well!!!!
A word of caution, however. MN law is written in support of children who have DS. Services should be at a MINIMUM of once weekly, particularly for PT/OT during the birth-3 time. All the research has shown that in kids with DS, if services aren't provided regularly until AFTER a delay is show, they will never "catch up". That services should be provided, based on diagnosis, even if there is no delay.
The world of EI is a tricky one, and there are a couple of districts in the metro area (yours is one of them) that are notorious for taking advantage of the fact new parents don't know how the system works.
Tom, This is the beginning of making sure your son gets what is needed. I don't know IAn but I don't think having OT once every two months is enough. My daughter didn't have any major problems (in regards to OT) but she was receiving OT one hour a week. I would see what other kids with DS are getting. If you want more you need to make it clear and fight for what you want. How much PT is he getting?
This is good news and I imagine a relief for you and Annie.
All the appointments, doctors, ect. . , even when needed and grateful to have them, are just plain hard. and exhausting. And start to make you feel like yourself, or your child, is a disease to be cured rather then a life to be lived.
And what fills your cookie jar? I'm partial to the peanut butter with chocolate kisses.
Thanks, everyone. (See my latest post).
And RK, just to be clear, I wasn't in any way suggesting that you should "stay in YOUR own story", as in, butt out. When I reread my comment I thought it could be misunderstood. Cheers... :)
Isabel: Unfortunately, it's cookie JARS, and I'm a Crunch n' Munch kind of guy.
Tom, follow your instincts, and buttress those with professional opinions. Ciarra had not a lick of therapy until she was at least 4, no OT, no PT, no ST. She did have developmental therapy based on the computer. She did quite fine, and was even advanced in fine motor skills. Kids are as variable as flowers, and each one will be different with therapy. Not saying dont do therapy, just do what YOU think is best. We opted out, and I would do it again in a heartbeat.
FYI,
We were specifically told by our daughter's speech therapist that children who have surgeries and have tubes in their mouth etc. have a much greater chance of having difficulties with different tectures. This can lead to a variety of problems and so they worked very hard on the mustles around her mouth and introducing different tectures. She is now a great eater and has no problem with different types of food. That wasn't always the case and I believe early intervention helped with this.
My new philosophy is to be proactive and not wait on others to make decissions for my child.
Michelle and Steve: Thanks for the various perspectives; Annie and I are still chatting this weekend trying to come up with a program to fit Ian's needs. Tough to know what to do.
He's already started rolling over on his own, at three month (as of today) which was on par with what Silvi did.
Hmmmm.....
My E didn't get any of these services for almost two years, I didn't miss them, not one bit.
She never qualified for PT--ever.
She gets very little services now. I'm still not missing them.
Rebecca
still not tryting to steer you, but here is how I would address the issue:
if they are offering monthly services, and you are comfortable with that, use those monthly meetings to watch in case he begins NOT to be keeping up. 4 weeks is not a lifetime, if they get worried, they will certainly alert you quickly, and 6 months to a year wont have passed. You have to choose what is best for you. I would say the folks doing his services are aware that he MAY start to slip behind, but are willing to see him quite regularly in order to watch that very closely. If they were hanging you out to dry saying see ya in a year, I would feel differently. You have to weigh his needs, your own needs, and long range planning. If you trust them and your gut tells you he is staying on an even keel for now, enjoy the time you will have extra to just be a family, esposing him to all the same things you do your daughter. Sounds, sights, commotion, textures, everything you can imagine. If he begins to fall behind a bit, address it, then reevaluate. No decision is irrevocable. For us, the time to see our daughter as just a child and not be constantly dealing with strangers/outsiders who thought they knew her better than we did was a godsend. Just trust your instincts, and always always follow up on evals etc to monitor things closely.
I took no offense, Tom. I probably SHOULD be told to butt out more often, not that you were doing that.
And wow, this really turned into a hot topic... you and Annie will make the right decision. He's yours, and only you guys can know what he needs. I trust your judgment....like that matters that I trust it. But hey, I try.
Well here I arrive, late to the party, to upset the apple cart, so to speak.
Our Avery never needed OT, but had PT right from the get-go, for a relatively long time. Speech was in between what was typical, or normal, for anyone.
Which is a long way of saying I'm encouraging you to listen to Ian first, to yourselves, second, and to all of us third. I suspect you're already doing that!
Because each of our children have 46 other unique chromosomes, and each child with an extra expression at the 21st pair has a unique expression...
I wish you all the best. I think all of the varying opinions signal one thing...our children are each their own selves, deserving of individual consideration.
Thanks again, everyone, for adding new things for us to think about. I'll let you know what we decide in the coming days and weeks.
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