Tuesday, February 10, 2009


When you have a special needs child, fighting for them becomes your life.

And it gets tiring, but they are so worth it.

After Payton was born, we had her evaluated by Early Intervention. It was decided at that point that she would get physical therapy. I was not necessarily happy with just physical therapy, but I wasn't sure my voice would matter.

And so we went with it.

When she was about nine months old, our geneticist told us that Payton needed to be getting speech therapy services from the county. So I used my voice and asked for it ... and we got it.

Up until she was two years old, physical therapy and speech therapy were the services that we got from the county. We were told we couldn't have more than two services and that if we wanted occupational therapy or an infant educator, that we would have to drop one of her other therapies.

Why does it work that way in my state? I have no idea. But it sucks.

I can't remember exactly when ... perhaps after her first birthday ... but we began taking Payton to see Pat Winders at the Kennedy Krieger Institute for physical therapy. Pat is an amazingly talented physical therapist for kids with Down syndrome. She also wrote the book Gross Motor Skills in Children with Down syndrome and we were just very blessed to have her for a therapist, even if just for a short time before she moved on us.

In light of the therapy with Pat and the fact that Payton walked at 17 months, we decided to drop her physical therapy when she was 2 years old. The only reason we did that was so we could pick up occupational therapy to help with any sensory issues she might have had since she was a horrible eater.

The fall after she turned 2, she began preschool and all of her therapies went away. The thought process is that she would get her therapy through what they did in class at school.

I wasn't so sure about that, but my voice didn't matter. We are very blessed to have her in a fabulous special needs school with an even more fabulous teacher, but I still wasn't sure it was enough for her.

Now that she has been in school for almost five months, they are finally starting to agree with me when I say she needs one on one speech. They agreed to have the speech therapist observe her and yesterday we met to discuss the outcome of the observation.

So ... her expressive speech is at 12-18 months, but her receptive speech is at 24-36 months. And I pretty much concur with this, as much as these ranges suck.

They have agreed to do a formal evaluation and if everything goes as planned, she will be getting speech one on one sometime during her day at school. Thank the Lord.

The nice thing about all of this is that her teacher is completely on board with me. She said yesterday that she would like to see Payton doing more expressively. Me too! Payton is so smart and her receptive language is awesome. It is boggling my mind as to why her expressive speech is not coming along like everything else. I also am going to check into private speech options and see how much that might cost us. Ugh.


  1. It is SO common for that expressive speech to come later, particularly if they're one of the earlier walkers. It seems that if they are more motor driven, speech comes later. If they're more speech driven, motor skills are later. Angela was very much speech driven! But at 3 she only had a FEW words, and I think I was the only one that could understand them. By 5 she'd stopped signing all together, and was talking constantly, but we had NO CLUE what she was saying AND she refused to sign at that point. UGH! Her hearing loss didn't help others be able to understand her either. Don't give up hope yet, it'll come! The fact that she's understanding so much speaks volumes. Does she babble much? Angela was largely silent, very little babbling except for single syllable things like "Da" once in awhile.

  2. You have the Waiver... right. You should be able to find a ST who will come to your house, darling. I'm working on it too. Can't help but wonder, wonder... wonder.. if Payton's issue and Austins' isnt the same thing. Ya know.. the bifid uvula and "palate" issue. I think you should explore that situation with Payton... I'll keep you posted on what develops with Austin's appointment this month.

    I actually came over here to tell you that we are NUTS to get daily emails from Martha. Nuts... like we don't have enough to do already. lol

  3. Must be tough to have to make a decision like that. I'm counting my blessings that we have early intervention happening. Aidan gets Physio, Occupational, Speech, and has an Infant Developmental Worker. Also, a Social Worker who more or less oversees everything. We're fortunate that all of these workers act as a team out of the same building, and will come to the house, or have us there to the gym . . . depending on Aidan's needs at the time. In Manitoba last year we also qualified for a Respite Worker, which was really important to us during the first 5 months of Aidan's life when my nerves were worn thin with worry about his heart. In British Columbia, we're on a 2 year wait list for respite - and have to pay half when we do get it. It's okay, I can handle life again without respite now.

    Anyhow - I'm feeling really blessed that we currently have these services - in light of the economy now, they may be changing in the future.

  4. I was never really thankful to live in PA until Goldie was born. It boggles my mind that we all live in this great nation, but our children are not all treated equally. Goldie has had 4 therapists for a while now. We added each as they were needed and some don't come every week. I have seen a decline in what little speech Goldie had since she started walking. Hopefully the expressive language will click for Payton soon :)

  5. Hey... please check out UnitedHealthcare Children's Foundation. They provide grants for kids to help with out-of-pocket expenses not covered or not fully covered by your commercial health care benefit plan. Check out their website for a quick app. to see if you qualify.... and if so you could use the grant $$$ to cover specific items... like therapy! worth a shot.

  6. sorry... here is the website


    best of luck

  7. Bethany, that is reallly lousy that you guys can only use 2 therapies at a time!!! It's so strange how states differ. We've had ST, OT and PT since Aleena was an infant.

    I'm glad things are moving forward for one on one speech therapy for Payton! And I'm sure you should be able to find assistance in paying for private ST, through insurance or the waiver. Keep on keeping on! Bethany, you are a great advocate for your kids!

  8. Carly walked at 17 months also. She actually reached several of her 'milestones' within the typical child range. I have never heard that if their motor skills come first, then speech comes later. Hmmmm. Speech is for sure, Carly's down fall. She talks some. So we know she can, but signs mostly. However, at the end of August, she started to string words together. Only three at a time. Still, she would rather sign. She understands everything. Her receptive skills are right on target. 'They' - all the educators - tell us she is quite intelligent. We are still hoping and praying for the day the words just start flowing non-stop! In her own time I suppose!
    Joany and Carly

  9. Oh yeah, I have always said that they are either motor driven or speech driven. P is definitely motor driven, for sure. But 20 months later (past walking, I'm saying), I am ready for more speech already!

  10. Bethany- depending on your insurance you should be able to get speech privately. When Lila was in Early Intervention we only qualified for an educator which was, in my opinion, total crap. After being in the system for over a year, with Lila falling farther and farther behind, we separated ourselves from Early Intervention, started private speech and PT and haven't looked back. I know that Kyle is in HR so he is probably very familiar with insurance but that's what I used to do in my former life so if you need any help I'd be happy to help. : )

  11. It can definitely be frustrating working with the state or county. They often make these rules that make no logical sense.

    All the best.

  12. I'm finding speech to be the most frustrating thing of all! Kayla gets 1 hour a day of 1:1 speech therapy, and we're still pretty stuck. Gah.