One of our readers asked me to blog about what therapies Jonathan is receiving and has received in the past. I am happy to share this, but must admit that when it comes to therapy, I’m a bit lazy. That doesn’t mean I don’t believe in therapy or don’t appreciate everything that therapy has done for Jonathan – I just haven’t wanted to make our lives “all about therapy” and often I’m not as good as I should be about making sure the therapy gets practiced once the therapy session is over.
However, even with a more “laid back” (or lazier) mom like me – (pick your own definition 😉 ) therapy has been a great blessing. For us, it has provided reassurance over the years that we’re on the right track with Jonathan. When we came home from the hospital, we knew that in just a few weeks our Birth to 3 (as they call it in Wisconsin – here in Georgia, it’s Babies Can’t Wait) team would be ringing our doorbell. Jonathan was assigned an occupational therapist, a physical therapist, a speech therapist and a regular teacher. I wasn’t sure how I felt initially about having this rotating cast of characters in my home, but my fears were unfounded. All of these women were amazing and will always hold a special place in our hearts. It was his regular teacher who said to Jonathan at ten months, “Jonathan, you are such a smart boy!” I’m a bit ashamed to admit this, but at that point in our journey it had never occurred to me that someone would ever say that to Jonathan – let alone at ten months. For me, it was the ultimate “aha” moment – that yes, Jonathan is smart and yes, as a parent I need to make sure the bar is always set high when it comes to his abilities.
Those first three years, we primarily concentrated on occupational (fine motor skills) and physical therapy (gross motor skills). Physical therapy was usually once a week – occupational sometimes once a week, sometimes once every other week. Speech therapy was usually just once a month in the beginning. We would work on strength exercises of the mouth and other exercises designed to get him used to different textures. As he became more vocal and verbal, we increased his speech therapy sessions.
I remember at times feeling frustrated, wondering if all this work was ever going to pay off. For instance, when he was eight months old, it seemed like it was taking forever for him to sit up. (And since Deedah is only 17 months older than Jonathan, her “typical” developmental milestones were still fresh in my mind.) I had reached a point where I was thinking – “Dude, anytime now!” 😉 His therapists assured me he was on his way. They also told me it is not uncommon for parents of children with delays to get frustrated and impatient – and yes, even grieve at times. Just knowing that I wasn’t alone allowed me to relax. Now I look back on those days and am grateful that I was able to savor those precious baby stages with Jonathan a little bit longer. He was my last baby and I now consider myself lucky to had have a “world class cuddler” to hold onto longer than the average mom.
Three years ago, Jonathan’s physical therapist at preschool “fired” herself. This was after she rounded up a tricycle and brought it over to Jonathan’s preschool, ready to help him learn how to ride. It was going to be a big day and she was ready to work on it at long as it took. Well – Jonathan took off on the tricycle in an instant. Oops – I guess I never mentioned to her that that was a skill he had already acquired. After that episode, we both agreed that Jonathan’s gross motor skills had come along way and that he probably didn’t need regular physical therapy anymore. In fact, Phil and I noticed that Jonathan’s gross motor skills really started taking off when we moved to a warmer climate, where he was outside more, running with a regular gang of children in our cul de sac. I can’t tell you how much improvement has been made in just allowing Jonathan the time to go out and chase after his big sister and other kids.
We’re still working on riding a two wheeler, however. He rides a bike with very loose training wheels . It seems like losing the training wheels is the only thing physically Jonathan has ever been fearful of. Once it cools down here in Savannah, we’ll break out the bicycle again and hopefully have success this fall.
I also believe swimming and karate have been a huge help to Jonathan because these are sports that allow you to develop and compete as an individual – on your own time. However, he has also thoroughly enjoyed and benefited from team sports like T-ball and basketball. I’m so grateful for our local YMCA, which has always been very supportive of Jonathan and other children with Down syndrome. All of these sports activities have allowed Jonathan to interact with typical children. And in addition to helping Jonathan with his speech and social skills, sports have also helped him immensely with skills like listening, problem-solving and waiting your turn.
About a month before school started this year, Jonathan’s private occupational therapist “fired” herself as well. (She had been seeing Jonathan every other week for an hour.) We miss her terribly because she is an amazing therapist and person, but we are so pleased he has come so far. (She is also on standby should any issues arise that need more attention.)
Jonathan is still receiving services from the school occupational therapist who comes into the classroom occasionally to monitor what he’s doing and to make sure he stays on his current upward track. The school therapist has been blown away by Jonathan’s progress. This was huge for us because Jonathan was not even interested in picking up a pencil or a crayon two years ago before he went into kindergarten. I started freaking out about this, buying several handwriting workbooks the summer before his first kindergarten year and trying to force him to sit down and do the exercises. It was a disaster. He just wasn’t ready. Last year, before Jonathan entered his second year of kindergarten, I signed him up for a summer fine motor skills camp for kids ages 4 to 6. (I did not want to repeat the previous summer disaster with Jonathan, myself and the workbooks – let someone else deal with him I’m thinking ;-)) After a few days of camp, the counselor said she didn’t think Jonathan needed to come back for the second week – that his skills were too advanced for the class! And so by the time Jonathan went back for his second year of kindergarten, his writing skills had gone through the roof.
Incorporating fun activities in his private O-T sessions and borrowing some techniques from the program Handwriting Without Tears helped a lot. So did inclusion. Last year in class, Jonathan sat between two typical boys who would constantly say to Jonathan, “Come on Jonathan – write within the lines – Come on, Jonathan – keep up – We all have to finish our morning work and then we can have fun, etc. etc.” (God, I love those kids!)
Jonathan’s greatest delay, as is true for most children with Down syndrome, is speech. He receives one hour of private speech therapy a week and three half hour sessions a week of speech therapy at school. At school, he is pulled out of class during a time where he is not missing any core academics. It is not a private session at school, but a small group. At first, I was concerned that a small group session would not be intense enough to meet his needs. Now I believe, it’s a great setting for him – the children probably have more fun in a small group session and Jonathan always seems to thrive on a little healthy competition. 😉
Recently, Jonathan’s former private O-T said, “Jonathan’s gonna do what Jonathan’s gonna do.” And I mentally finished the sentence – “….when Jonathan’s ready to do it.” It’s true. Jonathan always comes through. It might not always be on the time-line I have in mind but, in his seven years on this planet, he always catches up. And that’s when I’m reminded of the therapy that Jonathan has provided for me over the years – teaching me that a little bit of patience and a little bit of faith – go along way.
In Brooke’s next post: more on therapy and the Downsed Conference in Atlanta – hear what the professionals have to say.
And for future posts: Post your own specific therapy questions as a comment below. The staff at Hope Haven Children’s Clinic and Family Center in Jacksonville, FL will answer select questions. Jonathan went to Hope Haven for an evaluation two years ago when he was five. We were blown away by their therapy team and their practical, creative and easy –to-incorporate- into-your-own -life approach!