Ruby's Mom said...
Good work Fin!Lisa, I was reading in your earlier posts and
saw you mentioned you take Fin once a week for P/T.When did you start that?
Ruby's P/T and O/T didn't think she needed therapy yet and are going to evaluate
her again at 6 months.Should I be worried they aren't working with her?Her O/T
has a teen daughter with DS.
This is something I've actually been wanting to address. I've noticed from reading so many other parents' blogs that EI varies a great deal from state to state.
Here in California - or at least in my part of California - Regional Center (which is a state-funded program offering services to children and people with disabilities) starts with physical therapy for babies with Ds. Eventually occupational therapy is added, and then speech therapy. It's all done in the home. When the children reach age 3, services are provided by the school district rather than Regional Center.
We started PT with Finn when he was 5 or 6 weeks old, and initially we agreed to twice monthly sessions even though typically once a week is offered. At that time, I just wasn't emotionally ready to have that much of our time taken up by therapy. I just wanted to try to enjoy Finn being my baby, you know? And not so much as my baby with a disability. We have recently increased his PT to once a week, however, because I feel more ready now. I'm not sure what the timeline is for adding OT and ST. I know it was explained to me early on, but it's hard to remember, and I actually have an email in to Finn's service coordinator to get clarification on this.
I know in other areas, they start with OT, and ST starts pretty early too. I think (but I could be wrong) that here, ST doesn't start until well after 12 months.
With it varying so much from one area to another, it makes you wonder what the best course of action is, and if your child is getting the best. I wonder if any broad study has ever been done to determine what course of action yields the best results - you would think so, wouldn't you? And if so, why it varies so much depending on where you live.
I'm surprised that you're being told that PT isn't necessary at this point. My understanding is that PT is paramount early on with children with Ds to help them develop their gross motor skills. I think this is definitely an area where parents need to be advocates for their children. If you feel she isn't getting the services that will best serve her, you have to buck the system and make yourself heard to get her what she needs.
Update: Finn's service coordinator called me back a little while ago and explained to me that although there is a typical course of action (here) for providing services for children with Ds, they really try to individualize it based on the child and not the diagnosis. Finn's physical therapist is required per her contract with Regional Center to do a formal evaluation and progress report on Finn every 6 months (which will come up in February), at which time she will make a recommendation for continued services. Services are provided based on the therapists' recommendations and the parents requests - so although OT may not typically be offered until, say, 12 months, I could request it earlier or delay it until later.
8 comments:
I agree that PT services are paramount and should be started right away. We started working with John while at the hospital. Even though there may not be formal services wililng to start right away, there are some things that parents can do such as baby massage with different textures, etc. As a parent of a Ds child and a Physical Therapist Assistant, this is probably THE service that I would push for before any other unless your baby is having trouble with swallowing/suck. I would then ask for a Speech Therapist.
Lisa, this is good that you are discussing this subject. Parents of children of Ds are often times at the mercy of the system and sometimes the system works slower then what we think it should or sometimes it is just not explained to us very well. I might add that parents shouldn't be intimidated into not asking questions.
We use private therapy because I was told by other parents and Ruby's pediatrician that the county that I live in does not have good services.I know services from the county start at birth.Our insurance covers the therapists and the office I go to is not far from my house.The doctors and nurses in the hospital and Ruby's peditrician have all been surprised by Ruby's muscle strength so maybe she just hasn't needed anything yet but it just seemed to me that Fin looks like he is pretty strong ,too.I just want to do what is best for Ruby and wondered if I should have insisted on her having therapy already.She just hasn't seemed that much different than my other children at this age and I just expected the therapists to know what she needs.She does go to ST already.
Good explanation, Lisa. We have lived in THREE states since G was born and generally that is how it worked in each place (CT, VT and now MD). However, in VT we were offered all three services (PT/OT/ST) weekly while we really had to push for ST here in MD and also had to wait awhile.
It DOES have a lot to do with what the child is ready for/needs, but I believe it is also a "right" for therapy. I pushed and got speech (not that I love our ST, unfortunately). I would suggest anyone who does not feel they are getting the services they need push harder...even if it's a little later there's no sense putting it off even longer. And it's not fair that some people pay (even if it's the insurance paying) and some do not. There definitely are better areas than others. That is one reason we chose to live OUTSIDE Baltimore rather than inside (by about 2 miles) just because of the jurisdiction of the services! It's nutty (and annoying).
G started PT weekly at 13 days old. OT started at 6 months, as did speech. But then when we got to MD (Georgia was 15 months then) we did not get speech again until she was 18 months.
Currently we see PT & OT every 3 weeks, speech and our special educator (something they have in MD which they did not have in CT or VT) alternating weeks to work on communication.
We cut back on PT and OT because Georgia was not benefiting (at this point) from more frequent visits. I can't believe we only have a year left of services in the home!!!!!
(Sorry to steal your comments space.)
Avery was evaluated in the NICU and later, at 6 months. We began PT right around then, even though the actual home visit didn't take place until a bit later. I wasn't aware (and wish I had been) that servies sometimes have a waiting list.
Too, it's true that everything varies from state to state and it's all a bit confusing. One thing I didn't know (and wish I did) was that speech is related to breast feeding, even. So speech can come much earlier than most people think, though it's a service that's often overlooked.
Having said all that, I really believe that the child should lead the way. I don't think there is a one-size-fits all model, here. With Avery, his health issues put most everything else on the back burner, and I feel (even now) that it was right and good to approach it this way.
I've been criticised for this approach, but I still stand by it. Parents need to learn about all the options, then do what they feel is best for their child. We really do become the experts, very quickly. We are the common thread--we see all the evals, we see ST and PT and OT, we see the behaviors and skills over time and across illness and health.
You're doing great, Lisa! If you have any doubts, just look at Finn. He's wonderful.
xo
Cheryl, Finn also has very good muscle tone. Every professional who has come into contact with him - doctors, nurses, therapists, etc. - have all commented on his lack of low tone, so I'm sure that works in his favor as far as how well he is doing. He does indeed seem mostly like my other babies so far. Lately, I have started noticing small delays (for instance, he holds his head up very well but maybe doesn't push up on his arms while on his belly quite as much as his siblings did at this age??), but I know that I am on high alert for delays, so I really don't know how much of it is just my perception, or rather, fear, I guess.
As far as therapy, it's hard for me to say how well Finn might be doing with less therapy, given that he has good muscle tone. I like feeling that we're being proactive. It's a personal call that every parent has to make, I guess, but the best way to arm yourself is through education and information.
Evan started OT at around 3 or 4 months, because they said that early on, PT and OT are really working on the same things. With very small infants, that is. He started PT after his heart surgery, at 7 months. Speech started at 4 months because we were having issues with the bottle. It is funny, though, how every state is different.
With my brother, we have always just done the PT/OT, etc at home without any therapists. We bought a couple really good books - one is on Gross Motor Skills written by a PT and the other is on Fine Motor Skills written by an OT. Those were very helpful. My brother has done great and excelled quite well. We also do ST with him, but would like to get him into an Oral Motor Therapist, since it would be nice to have a guideline of what we need to do with him exactly.
Anyways . . . you can see those two books I mentioned at www.gotdownsyndrome.net/books.html.
~ Qadoshyah
Joaquin also was born with good tone (one of the reasons his diagnosis was completely missed) and he also was developing on schedule early on. We got PT twice a week at 4 months old. ST once a month in the form of oral/motor therapy (even though he has no swallowing or suck issues) there are still exercises and things you can do so that there is minimal speech delay later on so the muscles of the mouth are strong. We declined Child Life that was offered 2 times per month and we begin OT now at 10 months old. This is all because I asked for it. We are also going to get music therapy and we will take a sign language course. We have an awesome regional center but I'm also very proactive and believe in getting as many resources as possible to give Joaquin every thing he could possibly need. We also do our own therapy program and much of what we do can be found in the book "How Smart is Your Baby" by Doman. It's an excellent book for all babies (not just our special ones) and should be required reading for all parents. It's the closest thing to an owner's manual you can get to help give your child all the tools to reach his fullest potential. Anyone interested in learning more about the program we are doing can read about it on our blog we also have the link to the website. Hope this helps!!!!!!
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