Dylan had his One Year Evaluation with our Early Intervention Team yesterday. He did very well and has made some really nice progress. Actually, he has met all but one of his goals that we had set for him back in January or February orrr whenever our last eval was. It is probably no big surprise that the goal he did not meet was his feeding goal. I think it went something like this: "Dylan will be completely weaned off breastfeeding and will be eating solid food.". Umm...not quite. Eh, we'll just keep on keeping on with that one, right? But really, I could not have been more pleased with how it all went. The Team respected my wishes to focus on Dylan's progress rather than be given a "score" at the end of it all correlating to the age at which he is working at. And again, it's not that I am in denial here (although I do admit he is quite the superstar, ha!), it's just that I know myself. And I know that I would not have done as well if I had to hear that he is really functioning as a "x" month old. We do better comparing Dylan with Dylan. That's it.
So, I decided to ask our service coordinator if it would be possible for us to start speech services in the next few months. They told me the same thing that they've been telling me all along - that I am "already working on speech with Dylan every day just by talking with him and playing with him" and that even though "he receives OT and PT, they are also actually incorporating speech with him with what they are already doing". While I do understand this, I am not 100% convinced. I mean, I would kinda sorta prefer someone who specializes in speech to be working with my son. But then again, what do I know? In any case, they said that they would put in for a consult. That way, the speech therapist will come out and will evaluate whether or not it is appropriate for Dylan to begin receiving ST services. I'll be curious to see what happens...
Be honest with me here - am I out of line to suggest starting speech at this age? Will it be "worth it"? I mean, if nothing else, it won't hurt, right? It's just that speech is a big concern of mine and I know that many kiddos with Ds struggle with it. I just want so badly to give Dylan every opportunity that I can. I do not want to look back in a few years and wish that I had done something sooner, you know? But then again, I also do not want to bombard Dylan with a zillion therapies...bahhh.
Shoot. Again with the manual. Where did you say it was??
21 comments:
I think you are completely on track and right in your thinking. Sam turns one in less then a week and at his last OT and PT session I asked about ST as well. They said in a few months they would have someone call and do an evaluation. They to said that we are already doing speech therapy with all the talking we are doing but I told them I would really like an official evaluation. Even if the ST doesn't come as often as the PT and OT, I still want them to give me some tips. We did get Sam a reading program that a lady created for kids who learn differently. You might want to check it out. I posted it on my blog a ways back but you might not of seen it. The link is http://www.ereadingpro.com/ The lady who created it came and talked at a conference and I was really impressed. If you have any quesitons email me at tbdingman@comcast.net
LOL if you find that manual, pass it on : )
he is doing awesome ! we are sooo jealous that he waves and claps !!!
Here in GA, they don't start kids on ST until about 18 months, but I got B started at about 13. Love those loopholes. See, we were having feeding issues (getting him off the bottle and onto a sippy cup), so I called our coordianator to have her come out and set up an OT evaluation. (He only gets PT b/c he doesn't technically need OT for anything right now.) But once the coordinator realized that it was for bottle/sippy and not feeding, she suggested ST instead of OT b/c it is an oral motor thing, and the ST could work on it. PLUS our OT is totally overbooked and our ST had openings. SO B gets ST twice a month for 30 minutes. We work on the bottle/sippy thing and we also do some speech-related stuff, which to be quite honest, all goes RIGHT over his head at this point. He can't blow bubbles. He can't mimic "babababababa." He can't distinguish between a cow and a tree on a flashcard. But at least he's being served.
We started speech at 2 months - and mainly because I did request the consult. Our ST has never been really intensive - just once a month. I think it's good that you've requested it.
I love just comparing Dylan to Dylan. That's awesome!
Dylan should absolutley be having speech thearpy! I am shocked that they are holding out on you! That is not right! Stand your ground and make sure he is seen!
Maher started at like 4 months old. We began with excercises to tone the jaw muscle. Our ST said wih the low muscle tone the jaw usually hangs open. When that happens air is continuously passing over the tounge and it becomes desensitized; therefore, the child will prefer high flavored foods over bland ones. And we all know that high-flavored foods are usually junk food!
We also work on tounge retraction. Again, because of muscle tone the tounge will slightly protrude out of the mouth. When you tighten those muscles with excercise the tounge is easier to hold inside the mouth.
Our ST also works with Maher on drinking through a straw. She has recommended Maher drink from a cup with a straw because it encourages tounge retraction and uses more muscles than a regular sippy cup.
You see, ST isn't all about speech. At an early age it is about preparing the muscles so when the time is right for speech to occur there is no delay because of low muscle tone.
Laurie, we don't even get a ST eval here until 18 months :( Not sure how I feel about that. It still makes me cuh-razy how varied therapy services are from area to area.
Just curious, whose goal was it that Dylan be "completely weaned from bf"?? Was that their goal or yours? I could see if it were your goal, but not sure what benefit they would see to his being weaned at this point.
laurie,
i found your blog through special k's blog. i have been trying to find blogs with little ones around my sons age because i'm always learning new tips and tricks i can do with henry from fellow moms. i want to add that your son dylan is gorgeous!!!!!!
and in reply to your last post. i would ask for speech. i agree that a pt/ot can do some things that kind of overlap with one another and even overlap a bit with speech therapy. but for the most part in our experience all three are completely different. especially speech versus the other two.
if your pt or ot is doing specific things to work on oral muscle strength and vocabulary, which would be odd, than i'd say you are okay. but if they aren't than i would ask for speech therapy. henry has improved a lot since starting speech, but we had to go to private therapy for it. our early intervention program wouldn't give it to him. they also wouldn't give him ot. :(
Hi Laurie
I would ask for sp to come in. We have had sp come in from about 2 months. She works on oral stimulation, keeping him stimulated to textures in the mouth and hand, introducing an oral brush and stuff. It really depends on the region and country though. I am in Canada so service maybe different. Our ot does feeding and songs and fine motor. Our ei coordinator does sign language and any other goals that I want for my family. If you feel like you are missing something, I would push for it!
I think Dylan is going so so well with everything! He is just as precious as can be! I feel the same way about speech therapy. They say the same thing, like.. we are doing some speech therapy with this, and this and that... but I want it to be official too! They say they won't start him til 18 months... keep us updated on what you find out for him!
I agree, you need to ask for ST... Kennedy didn't get it until 18 months because that's the soonest that insurance would approve it. THEN however she was on a waiting list FOREVER, it was nuts. I say, the sooner the better! Yes, you ARE working with him during play and so is OT and PT but an ST does specific things that our OT and PT doesn't do and it's helped Kennedy A LOT. At least get an eval... if the ST doesn't think Dylan needs therapy right now, she will tell you, but you definitely have that right to ask! :)
After reading the previous posts I totally agree with the other bloggers that Dylan deserves to have ST right away. Liliana has been in ST since she was 8 months old and they do a lot of the same things the OT can do yet they also do things that are different too. The low muscle tone is the big one. Using the exercises they show you will really help strengthen the muscles in his mouth. Also I believe that sign language is extremely beneficial and they can help you get Dylan started on this too. Good luck and glad to see that Dylan is doing so well!
Yah Dylan! We started speech this past month and I love it compared to our OT, where we were supposedly already working on speech.
I hear ya,I have been getting the same feedback when I ask about ST. All I really want at this point is just someone to come out once a month and give us tips, techniques that we would use everyday. Keep pushing!
I say push for it if you can...Brayden is going to be receiving ST when he turns 18 months, because that is what they do here...so for right now we have PT, OT, and his developmental teacher...but I can't wait to start ST, because every therapy is different and I have learned SOOOO much from everyone with ST...Dylan is doing so good and you are a great mommy! I wish we all had a handbook that laid it all out there for us and everything just worked! Keep us updated!
Liam started ST through Early Intervention when he was 4, 5, 6 months old. Sometime around then anyway. I definitely think you should have Dylan evaluated. However, our ST through EI is worthless. Horrible. She just sits and plays with him, doing absolutely nothing different than what I do (and what you're doing). She refuses to work on feeding or other oral motor skills. We ended up doing private ST because she's so terrible.
It's good to get an eval, but I would suggest having specific questions about what your concerns are and how the ST is going to work on those concerns. You know Dylan best, and you know what he needs.
I absolutely 100% encourage you to start with ST!!
I started Malakai at 8 months, even though he isn't 'speaking'. ST is about more than the spoken word, there are many precursors to speech, such as teaching the concept of turn taking (for obvious reasons later on) during playtime, as well as teaching choice (between two toys for example) and then how to request (pointing) what they want. Also there is mimicking, and eventually you want them to mimick your sounds (like ga ga and ma ma). You can have a conversation with your baby if you mimick their sounds - they love it! It is all very important to learn these things before speech develops. I wouldn't have known these things if I didn't see a ST. Ok, so we only go about once a month, but we're starting somewhere and I'm seeing wonderful improvement in Malakai's understanding of turn taking (although nothing much yet on the pointing and requesting.. but that will come).
So - my short answer? Push for it definitely!!
Why? Because there is nothing like a frustrated toddler who can't communicate... it is not a nice experience for any little one.
I so agree with many of the above responses...if you want ST, you have to push for it. Our EI group provided general oral-motor strengthening help, but not "speech therapy". I wish I would have known to push them a little more (earlier) for speech-specific exercises and help. I would do all the research you can on speech therapy for little ones so you can begin doing things at home to help Dylan in case you can't get the consult or ST fairly soon.
Here are a couple of links that may be of interest:
http://www.down-syndrome.org/information/language/overview/
http://mommyspeechtherapy.com/
I don't think any parent is ever out of line when they suggest something they think will be helpful to their child. No one is a better advocate for Dylan (and Cassidy) than YOU!
I nominated your blog for the Golden Advocate Award! Stop by my blog to read more!
We got speech only after I really pushed for it. My suspicion (based on nothing but my own impression) is that there aren't many STs available, and they try to put it off.
Follow your gut -- if you think it's worth pushing for, it is.
There is a book called "Early Communication Skills for Children With Down Syndrome". I was just looking at it on Amazon,and I'm going to either order it or try to find it locally. My baby is 6 weeks younger than Dylan,and I've been wondering the same things about speech development.A page in this book says that it is against federal law for the early intervention people to put a limit on how early to begin speech therapy.
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