Nicholas has a September birthday and Down Syndrome. To me, that equals a kid going to Pre-K seemingly very young.
So, I was already nervous about this transition. You can imagine that the nerves were only heightened when I learned that all of his evaulations would be happening via teletherapy.
I am not sure about the rest of you moms and dads out there, but for me teletherapy has been a hit or a miss when it comes to Nicholas’ participation. At first, he was so pumped to see all of his old friends on the screen and thought it was super cool to do activities with them. He was great at staying engaged the whole time.
Lately, well with the last two sessions, it has been kind of a struggle to simultaneously keep him focused on his task while making sure Marley doesn’t disrupt what he is doing. I do my best to schedule the sessions during a routine “sweet spot” like right after nap, but it doesn’t always work out that way.
The people who do the evaluations for Nicholas are therapists that he has never met before, which makes it a little MORE tough to get him interested in the screen.
As you can see, we have a few things stacked against us here.
Thankfully, these “evaluations” are based mostly on parent report, so even through some crankiness we have been able to translate to the evaluators where Nicholas is developmentally.
Now, I have written in previous posts that there are not many things that are different between being Nicholas’ mom and the mother of a typically-developing child, Marley. Well, today it clicked. There is one MAJOR difference.
Marley doesn’t have an extensive calendar of appointments and activities.
Being Nicholas’ mom is sort of like being a manager. Scheduling his revolving-door of appointments with therapists, filling out endless forms, and answering tons of phone calls. These things are adding up to be a heavy workload, and we are only just starting school!
Here are some tips that I have gathered from experiencing this first hand.
Have some activities ready that will show both your child’s strengths AND opportunities.
By opportunities, I mean opportunities for growth. Things that they may not be so good at yet, but are well on their way to mastering. For example, today I had two puzzles ready. One was a shape puzzle that he can do successfully 100% of the time, and the other was a very similar puzzle that is a litle bit more difficult for him to do.
As per the therapists request, we had paper and crayons ready. If your therapist did not specify what to have ready like ours very conveniently did, then ask! This brings me to my next point.
Use this opportunity to ask questions
I work in education, and still had a lot of questions for each evaluator. It doesn’t hurt to ask what exactly they are being evaluated on, what they are expected to do at their age, and how their development currently compares to that of a typically-developing kiddo.
Take notes afterward
After what will be 4 evaluations, there will be a lot of information thrown our way. This is a tip that I did not do, but really wish I did. It would have been nice to look back on my notes and see which therapist said what, and to be able to cross-reference the information with what we already knew. If you do this, you will be able to remember which therapist said what, and how their answers were similar or different than the other answers you have already received. It is also a great tool to have handy when his first IEP meeting comes around.
Try to have another support adult when dealing with siblings.
There is nothing more heart wrenching to me than getting all of Nicholas’ toys ready, with the computer set up for teletherapy, and then trying to get Marley away from what is happening. Marley doesn’t know that Nicholas needs to show his skills off to the screen. She just sees a lot of fun stuff happening that she is not allowed to do. Not fair!
So, if you can swing it, it would be a lot easier to have someone else there doing some sort of other activity with the other kids in the house so that you can shake some mom guilt.
This is especially true for PT. There are so many PT exercises that require two-handed adult support. Marley is definitely going to want to get in the way of this one, so I specifically scheduled it on my husbands day off.
Be as honest and specific as possible!
We know as parents to kids with Down Syndrome that being “behind” developmentally is just a part of the deal. A lot of the questions that the evaluators will surprise you, like asking if your child gets him/herself into a carseat, or helps get themselves dressed. For Nicholas, these are both too soon.
The evaluations are mostly based on parent report, so if you have seen your child eat with a fork once or twice, don’t report that they eat with silverware with success most of the time. You want to make sure that you are giving the therapists the most clear idea of where your child is at in their growth. In my opinion, the more therapy they can qualify for, the better! More chances to level the playing field for the future!
Anyway, that is what I gathered from the evaluations, and I hope these tips help! Thank you to all of Nicholas’ evaluators for being so great through this experience!