Johnny's Therapy

Many people have been asking what Johnny does for therapy, here is what we do.

Johnny gets Occupational therapy through the state. He automatically qualifies for it because of Down syndrome. All we had to do was fill out some paperwork online and give them any doctor's note that had Johnny's name and the words T21 confirmed on it. Other kids get therapy through the state for a myriad of reasons. Sometimes there are other conditions, issues with prematurity, or less obvious delays that need assistance. Getting therapy for Johnny was easy because we didn't have to "prove" that he needed assistance, it was there regardless of whether he needed it or not to make sure he gets on track with his peers or stays on track depending on the situation. Here in Texas, the program we go through is called ECI (Early Childhood Intervention). They come out to your house for almost everything or will go to your child's daycare if that fits better into your schedule for working parents. The fees are on a sliding schedule based on take home income and the size of your family. We actually haven't paid anything yet because it is being filed with our insurance too and I am not sure if they are picking up the nominal fee per month or if it just takes a while to be billed. I cannot imagine the delay between a government agency and insurance company!!! Once Johnny was evaluated at about two months, it was determined that he would benefit from OT 2 times a month. He can be reevaluated at any time and as he gets older, more therapy may be added in. 

At first, therapy was difficult because Johnny would literally fall asleep in the middle of us working with him. It was a lot of tummy time and working on bringing his arms and legs into the midline (or middle of their body). Because most kids with Ds have low muscle tone, you have to work to train their muscles to move towards the middle of their body instead of spreading out. One thing I worked on when Johnny was smaller and less inclined to reach for stuff was to put a blanket or burp cloth between his arms and the car seat when we were running errands to bring his shoulders and arms in a bit. It seems to help as he does a great job reaching in midline now. 

For tummy time when he was a lot smaller, we would roll up blankets for him to prop up on. The boppy was just too big for his little body. One thing we would try to focus on was keeping his arms beneath him and his hips stable as he learned to pick up his head more. 

As he got older he was able to move onto tummy time on the Boppy for extra strength training. Again, we focused on keeping his hips down because we were trying to build his trunk, torso, and neck muscles. We would also put Johnny on his play mat underneath the arches propped in the Boppy rather than straight on his back so he worked on bringing those muscles inline. 

When he was younger we were encouraged to work on oral tone to try and work some of those breastfeeding issues out. We were told to let him chew on a gloved or clean finger of ours, to suck on a pacifier, or to chew on anything. This will be ongoing because we want him to build oral tone even though breastfeeding itself didn't make much progress. In order to avoid a lot of tongue thrusting or relaxed jaw that can be common with Ds we want him to build up these muscles. Also, it will help when he does start speech therapy at some point. 

As he built up strength and became a bit bigger, we added on tummy time on a ball that we already had. This really helps kids get their arms underneath them and to build their arm muscles. We need to work on the ball a bit more to help his arm strength for supported sitting and then as we start working towards crawling in the coming months. 

Once he got bigger we began working on rolling from side to back and side to tummy. I will have to post videos on another day of the way we work on that. Basically we manipulate the feet and/or hips and Johnny is responsible for moving the rest of his body in that direction. He is doing a really great job at it and we only have to give small tactile cues to get him to do it. Now we are just waiting for him to roll over on his own. He is coming close!

We do a lot of supported sitting in the corner of the couch. He doesn't like it too much so he always scoots his bum down so he can slouch in the corner and be lazy. 

Now that he has gotten bigger, we are working on supported sitting. We began with sitting him in our laps and holding a lot of his body for him and are moving away from that now. As I play with the girls or read books, we sit a lot on the floor with Johnny sitting in my lap or between my legs leaning against my back and propping up on his arms. 

To work on building more arm strength, we put a book, rolled up blanket, or pillow under his arms until he can do it all on his own.

And sometimes we get him good and balanced...

And then we let go to see what happens!

 The above picture is from today. He is starting to do supported sitting for several seconds. That is very big progress!

We will work on sitting for 10-15 minutes at a time, then roll over a bit, then work on playing with and reaching for toys some, then go back through the process at least one or two more times.


 I think it is important to recognize that kids get mad when you work them this hard. Johnny always gets a bit perturbed whether it is me or Ms. Carolyn working with him. However, I have found that if you let them get a bit angry they will be a bit more forceful with their movement which often leads to them discovering new ways to do things. So I usually let him get a bit fussy.

Other ways we work with him include sitting in the Bumbo which builds trunk strength and neck/head control.

And we hold him in an upright sitting position a lot. It has been challenging because we have been encouraged to not put him on our hip in the traditional baby hold. Because of their lower muscle tone and hip issues associated with that, we try not encourage that spread too much. So we have to hold him in the crook of our arm. It's cute, but takes some getting used to.

I am proud of my little man. I have a few other tips and tricks, but I will share those when I post videos of him rolling. I would like him to be sitting up a bit more, rolling, and moving around in a circle when on his tummy within the next month. It is simply my goals though so we will see how he does.