first IFSP meeting for Brock

[brocksmommy]

It's been awhile since I've posted. Brock is 18 weeks now and i've been trying to get him set up with with everything he needs. in a few days I'll have his 1st IFSP meeting. I'm not sure what to exspect. this is all still new to me. I could use some pointers, suggestion, something about what is going to happen at this meeting. I'm not sure where he is suppose to be at ( devlopmentally) is that a word? I know he is still like the day i brought him home, so that worries me. please help
hope and fam.

[Debi]

Well, Hope this is where the REAL fun of having a child w/ DS begins..all those darn meetings!!.
Here's a couple of things I would look for and I would also hope that the person or people you talk to would also be good about "guiding" you through this process, in terms of what ALL those abbreviations and acroynms mean and what kind of services to expect:
First of all this is a good time to create YOUR wish list for Brock.. what you would really like to see for him. They should be offering you consistent services such as speech and probably PT at this age with consults ready for OT or other services as needed. Yes, it is very true that you will be doing the hands on, day to day stuff and the therapists will be there mostly to consult with and make sure that things (early feeding, mobility, child /parent engagement ) are going as they should. But I think it very important that if they say they are coming once a week or whatever schedule you set up that it be consistent and hopefully you will have the same personnel over time.
The IFSP is also a time to ask for what you MIGHT need in the future such as any community services, respite, additonal therapies etc. They are SUPPOSED to be able to also act as a sort of "clearinghouse" of info for any health, family and support needs you may have now or in the future.

Hope this helps.. please be sure and post about how it goes.

[beccasmom]

Omigosh, Becca was 'not there' for her first year or so, and worse when she got sick she would disappear altogether, just withdraw into herself. We have a picture of her first Christmas, she is wearing a pink sleeper and lying on the floor near the tree on her back, well in that pic she looks like one of the toys. I read everything I could get my hands on but only really understood the concept of 'delayed' when I lived it. Her coming alive, so to speak, was gradual and we are sitting here trying to pinpoint an age that she 'came to' but it was gradual and came in quantum leaps or bursts rather than steadily. Where he is supposed to be developmentally? Forget that. He is where he is supposed to be and will develop at his own pace, and there is no absolutely correct chart or graph to go by because the varience of development in children with Downs is wide. The interaction with the in home therapists was good for Becca, though, and the support was good for us. We were also eligible to receive state funds to fence in our back yard to keep Becca from wandering off, and put up a play fort/swingset that is a therapy tool. Becca has benefitted greatly from both the fence and the play fort. Our caseworker got us into that program, as well as getting us a Boppee and signed up for free diapers. That lady really knew how to work it and she helped us out a lot, she had been in the field for years and knew a lot of people also in the field, and introduced us to some great therapists, and the Easter Seals program when we did not like the one we had.
I do recall that even then, Becca did not like the speech therapist, just like now, she refuses to cooperate with the speech therapist in school. I don't know what it is, but ST's are just bad news to Becca! I got used to the meetings after a while, they just became a part of our lives. We now have the IEP meetings, Individualized Education Plan, with the teachers at school, which include the nurse, the psychologist, the principal, and therapists, those are only twice a year and half the people don't bother showing up. At the first meeting we set goals and agree on what constitutes meeting the goal. "Becca will tell time correctly using the wall clock 7 out of 10 tries", for example. , or "Becca will count to 20 correctly 8 out of 10 times", like that. Back when we had the early meetings like the one you are going to it was stuff like, " Becca will respond to her name, or roll over, or identify this or that". So what you need to do is sit down and decide what you want your son to do. We even put down play the piano on one of them, and play the guitar. Your goals can be as simple or as complex as you wish. BTW, she now does play the guitar, by ear but quite well! But , I am really going on and on here. It'll be fine. Just listen to your heart, speak up, and don't be intimidated. You are calling the shots here, ultimately.
Good luck and God bless, and please let us know how it went.
beccamom,Laura

[beccasmom]

forgot to finish that, then at the second meeting we review how well Becca did with the goals, and think about goals for next time based on how well or poorly she did, ie identify her strengths and weaknesses, and just keep on with it year after year. Each report card is accompanied by a thick report of how she is doing on the goals.
What an awful lot of paperwork it is, I'll say that !!!!
Ok now I'm done.