Friday, October 28, 2011

Day 28: The Importance of Therapy for Children with Down Syndrome

I started this post back in September as I was lining up topics for 31 for 21, knowing that it was a topic that was important to me, and something I'm passionate about.  However, wanting to give it more time than I had, it just sat.  Coincidentally, my mother sent me an e-mail two days ago, saying that if I was in need of a topic to write about in these last few days of the month, I should write about how important therapy is early on for our kids, speech therapy in particular.  You know what they say about great minds...

Shortly after Samantha was born, my mother and I had a conversation about therapy.  She told me about someone she knew who had a child with Down syndrome.  She said the child, no longer a baby, was doing well, and that her friend (well, I'm not sure whether it was a friend or just someone she knew in passing) had been determined to do whatever was possible to help their child, starting at a young age.  I specifically remember my mother using the term, "throwing whatever they could" at the child (meaning therapies and opportunities) to help the child reach its (sorry, don't know if it was a boy or a girl) potential. 

My first thought was how will we be able to afford this? 

Let me address that issue of cost and affordability a bit later.  First, I just want to talk more about the title of this post by saying that therapies are crucial for our children, starting as soon as possible.  I'm not saying that people who have not pursued therapies or been offered therapies by their states/counties/municipalities have missed any sort of boat here, but I do just want to say how sad it is to hear, over and over again, that their states/counties/municipalities seem to think that therapies aren't important for new babies.  (I'm a firm believer that when they say this, they're actually just saying they don't want to pay for it.) 

The two therapies that are so valuable from birth are physical therapy (PT) and speech therapy (ST).  So many times parents are told that their children don't need either of those, ST in particular, until they're older.  Until they're at an age when they may be getting ready to walk.  Until they're at an age when they may be getting ready to talk.  Really?  They would honestly deny a child the tools needed to get them to that point?


So for any of you who have been told that, denied services for your baby, please know that there is so much that needs to be done, so much that can be done from the very beginning, starting with oral motor therapy to strengthen the muscles of the mouth and tongue, exercises to build neck and core strength, coordination and attention span. 

I know we were fortunate to have been offered all of this right off the bat, each for an hour a week from our county's Early Intervention.  We were on a sliding scale fee, assisted by my health insurance.  When Samantha started school at 2 years, 3 months old, the therapies were given in-school, but because I had good health insurance, we retained her ST & PT privately as well, to supplement.  We didn't know at that point that Samantha was eligible for Medicaid, which would have picked up the cost of her therapy privately (with therapists that accept Medicaid, of course) anyway, if her pediatrician were to state that it was needed.  When she was 3, we discovered that Medicaid eligibility was based on Samantha's income, not ours, and we quickly signed her up and got her on a wait list for a therapy center nearby that accepted it.  She now has an hour of PT and an hour of ST privately each week, covered in-full by a combination of my health insurance and Medicaid.  She also receives PT, ST and OT (occupational therapy - another important one, but one that PTs will often work on during a baby's early months) each week at school.  The only thing I'd want to "throw at" her would be private OT, but Samantha's fine motor skills are pretty strong, and I'm pleased with what she's been doing at school and working on with her school OT and resource teachers.

Even if you are not offered therapy from your state/county/municipality, even if your health insurance does not cover it, even if you cannot get Medicaid for your child, I ask that you still pursue therapy, even as provided by you, yourself.  Woodbine House publishing has some excellent books, including Gross Motor Skills for Children with Down Syndrome and Early Communicatgion Skills for Children with Down Syndrome.  Going hand-in-hand with my post from yesterday, remember that you, as the parent, are ultimately responsible for maintaining your child's growth and development.  Remember that you, as the parent, know your child best, and are the ultimate director of your child's growth and development, whether with therapists at school, privately, or at home.  Stand up and advocate for your children, hold your ground and provide valid, compelling reasons to argue against those that will tell you "no."  Fight for what your child needs, and be prepared to provide it yourself if necessary.


Team Lando said...

I think we're starting speech after the New Year. (We've had it on consult, and Ellie has DT which works on communication.)

I am so excited, because she's grown leaps and bounds from PT and DT! I actually wanted to start speech in the next month, then looked at my calendar and realized that might be mean to the therapists with holidays and travel and whatnot - I don't think we'd be available!

LOVE what our state/county provides. Love.

Anna Theurer said...

Excellent post, Becca! We are denied ST, PT, OT, etc as Ellie has not been in an accident and lost her ability to speak/walk/etc. Uck! So much for having insurance. ECI also denied us ST because Ellie babbles. Uh huh. So we have gone the private route and we do pay out of pocket. I am thankful that Andrew earns enough money that we are able to afford ST. I also had the Early Communication Skills for Children with Ds which has been helpful.

Becca said...

Ugh, that makes me so ANGRY, Anna!!! Have you sought out Medicaid for her? She should be eligible, just by virtue of her diagnosis, although I'm not sure how that plays out in other states...

Alicia said...

i always find interesting how works in other countries the early intervention services.

Here in Mexico you have to look for them. We were blessed that right away when Elias was born we looked up at internet and we got some info from people we knew, but many families, specially the ones who give birth in hospitals from the goverment doesnt get the info, and dont start early services. I've known families that didnt knew about them until 2 yrs old! and crazy but some of them were much better than my own son who had services since 40 days old. anyway, even i think therapies are necessaries, i do belive that good parents are necessary too. because too much therapy wont guaranty anything.

ok so, we have wide of therapies here in my city, that goes from free to high $$$. we were 20 when Elias was born, we didnt had any money, so we went to the cheaper, special ed school. here in mexico education is free, BUT some schools have a little cost, so the one we attended cost was $4 dls per month prox. and Elias had a school schedule from monday to friday, from 3pm to 5pm and he had PT, ST, OT, music therapy, neuro-gym and brain gymn, everything since he was 40 days old! ok he didnt do much back then, but he was there in the therapies. oh the therapies were in group, so our group had kids from babies until they walked.

Elias went to that special ed school until he began preschool at
3 and half yrs, and began attending a down syndrome center, where he gets what we call 'school help' 2 days 2 hrs per day, wich is basically OT, writting, reading, math, etc.

this year he began ST, one day 30 min.

i do believe that our best PT was gross motor skills wich i began following when Elias was 18 months he was just pulling to stand and didnt crawl, and in 6 months he was full walking

and our best ST has been signing (wich i learned online) and communication partners (online & books)

for me the therapist have been a guide, someone to tell me that im doing it ok, or what im missing, or what i can do to help him more.

Laura said...

This post couldn't have come at a better time. I've been thinking Ben needs more therapy. You've motivated me to find a way for him to get more help!

Denise Mom of 4 Amazing Kids said...

Do you feel like she gets enough therapy in school? I always wonder after so much one on one time will Maddie get enough, maybe we will have to do private too.

evrfwd said...

Great post! And I agree with you, early intervention is so important. Just recently we learned that we are losing our Occupation therapist. I'm really having a hard time finding a new one. This really scares me because I think this is so important to Maya's growth. I also know that i will have to step it up until we find a new one to work with our already busy schedule. Thanks for writing!

doozee said...

I need to get that book on communication skills... I have the one for motor skills and it was super useful in between pt (when we had a lame pt and / waiting for pt services).. As usual, great post!