I recently received emails from a mom in Richmond, VA who had a few questions about the therapy services we currently receive and the skills we are currently working on. With her permission, I am sharing our email exchange as it could be helpful to others. Here are excerpts from her emails (in green text):
I'm writing because I struggle in my county with therapy services. We only receive infant education 2-3 times per month. The IE is a PT, ST and OT all rolled into one person.I think many parents who have kids that are the same age as or younger than Matthew (he is now 28 months old) have these same questions. Many would be interested in insights and ideas that others have to offer. I invite everyone to share their experiences by answering any or all of the above questions.
Obviously in that one hour, we can't cover all the skills so we talk about them and I am given "homework" to do in between our sessions. We probably have one therapy session for one hour each week. As you can imagine, this puts a lot of pressure on us to make sure we (parents) are working on all these skills with him and doing them correctly. However, on the positive side, we don't have a lot of therapies to occupy our days and can spend plenty of time playing and enjoying other activities. This parent-centered approach leaves me struggling on whether we are getting good advice and whether our therapy sessions are similar to others. I realize all kids learn differently and at different speeds but it does help to have some insight into what others are getting.
I really respect your perspective and would be curious as to the following: what type of services and frequency are you receiving at age 2-3 yrs old? What did you feel were the most important skills that you are working on (now that walking is mastered)? Did you have home therapy, office therapies or group therapies?
Ways to share (if you are willing):
1) Leave a comment below....OR...
2) Write your own post in your blog (if you have your own blog) and share the link in a comment below...OR...
3) If you have already written on this topic, please share the link in a comment below.
(reformatted for easier reading with additional links to previous posts)
It's interesting to see how early intervention services can vary so much. I suppose every state/ county does what it can do given the demand and available resources. What matters the most is if you feel like you're getting all the services you are should be getting. I understand the need to ask other families about their experiences with EI in order to compare and see if you might be missing something. Of course, keep in mind that every child's needs are different so what one child may be receiving and benefiting from may not necessarily work for another.
What type of services and frequency are you receiving at age 2-3 yrs old?
In our case, at age 2-3, Matthew sees 4 different people who come to our home. We are receiving physical therapy (PT) every 2 weeks, developmental therapy (DT) every 2 weeks, occupational therapy (OT) twice a month, and speech therapy (ST) once a week via the early intervention provider in Missouri called First Steps. The frequency "every 2 weeks" is different from "twice a month" to accomodate a 3rd session during long months (based on how the dates fall).
We used to only get ST twice a month but since Matthew's annual evaluation in October, I requested for an increase to once a week. I'm glad we did it because we've seen more progress in the area of speech in the past couple of months. Granted, Matthew's not saying whole words yet with clarity (he started approximating words last week) but we definitely hear him babble and experiment with sounds and inflections more and more, along with the words that he knows how to sign.
Did you have home therapy, office therapies or group therapies?
I have no experience with group or center-based therapies. But I supplement by taking him to preschool gym at the YMCA, the Parents as Teachers playgroups, and tot time at the library. I used to take him to swim classes (in 2008 and 2009) for kids with special needs at the Y too but it got harder for me to do being pregnant. I view these as opportunities for Matthew to socialize and just be around other kids since he does not have any siblings yet. That will change soon though with his sister due towards the end of April. :-)
Other families also get music therapy. We don't as it is not available in our area. If it were available, I would probably request for it too. So instead, I enrolled Matthew in a Kindermusik class last summer and last semester because he enjoys music so much. It's probably not the same as a one-on-one music therapy session with more specific and individualized goals but it was still an opportunity to expose Matthew to music and kid interaction.
What did you feel were the most important skills that you are working on (now that walking is mastered)?
Now that walking is mastered, we are working on walking up and down the stairs. He can climb/crawl up and down the stairs but he doesn't have the strength and balance necessary to be able to walk up or down. We also worked on walking while holding one of my hands - very important when we are in a place where I don't want him to wander off alone such as a parking lot. Last year, we also started on the concept of jumping, which he now gets, except he still doesn't have lift-off. It's funny to see him count to 3 (he says "oo, oo, oo") and then bend his knees and straighten up to jump. Learning to kick a ball independently was also important for developing balance and coordination. Other gross motor skills we worked on after his 2nd birthday (and he has already achieved) included backing into a kid's chair (one low enough to the ground) to sit, climbing on the sofa to sit (requires more upper strength and coordination to pull himself up without assistance and sit safely on the sofa, facing the right direction), and carrying a big, heavy (for him) object while walking (trains him to adjust to the change in center of balance).
In fine motor development, we are currently working on rolling play doh into balls and with a rolling pin, squeezing playdoh, coloring with crayons, stringing beads, using a spoon and fork, and other similar activities that help develop finger dexterity. We had to work on pointing for a while too because he wouldn't point with his index finger with his other fingers and thumb tucked in (proper finger isolation). He used to, and sometimes still does, point with his thumb but he has started isolating his index/ pointer finger in December when I had my Hallmark Christmas decor with buttons out for him. He enjoyed listening and dancing to the music everytime he pressed the button and it would only work when he used his index finger. Now our next goal is for him to point on request, for example when asked to point at a specific picture in a book. Our OT also helps us with feeding issues.
Sessions with his developmental therapist are focused on cognitive skills such as problem solving and learning to focus and attend to a task for longer periods of time. The activities usually require using fine motor skills and a lot of thinking on Matthew's part especially when working on activities such as matching pictures, sorting shapes or learning colors.
Our speech therapist gives me suggestions for jaw strengthening and feeding, which I implement whenever possible with Matthew. So during the speech therapy session, activities currently are centered on articulating the b, d, m, and p sounds merely based on imitation and prompting. I recently learned of a method called PROMPT wherein a PROMPT-certified speech pathologist is trained to physically manipulate the child's mouth muscles in order to make a specific sound. Moms and fellow bloggers, MaggieMae, who blogs at Take a Walk on the Happy Side, and Jennie, who blogs at A Little Something Extra For Us, have highly recommended the PROMPT method to me based on their sons' progress when their speech therapists used it. I've asked our speech therapist about PROMPT and she said she had been looking into it and was interested in getting certified. I was encouraging her to do so based on other kids' success with it but it will ultimately be her decision whether to pursue it or not. I'm keeping my fingers crossed. Another method I was made aware of is the Hanen Program for Parents - It Takes Two to Talk. I haven't had a chance to research this yet but I know another blogger who took the course. You can find her at Cathal's Big Adventure.
What I like about the services we get is that all four therapists exchange information amongst themselves about Matthew. They joke that kids will sometimes speak for the physical therapist, demonstrate fine motor skills for the speech therapist, and show off gross motor skills for the occupational therapist and developmental therapist. Keeping communication lines open between them helps them come up with a more unified and targeted approach for each of their therapy sessions, overlapping where they should and reinforcing learned skills. This is evident during our annual and semi-annual evaluations.
Matthew will start school when he turns 3 in October 2010. This is when we transition out of our early intervention program and into the Early Childhood Special Education program, which is where Matthew will receive the therapy services that he may still need. I know another mom who sent her daughter to school before she turned 3 to receive services and I believe she was very pleased with how that worked out. If you want her experience on that, you can find her at Just RK.
I have simple detailed lists of developmental milestones that are organized by area of development and age range. (Contact me if you would like a copy). I got these lists from one of Matthew's therapists. While they are not modified for kids with Down syndrome, I have been using these lists to help me keep my eye on the horizon and see what we can work on next. I ignore the age ranges because if I focus on that then I'd look at the lists as a gauge for Matthew's delays instead of the progress he's making.