There is a famous African proverb that says, in part, “It takes a village to raise a child”.
Just two years into life with a special needs child and I have a daily revelation of how true these words are.
The day Emma was born, I was welcomed into our new village. Two doctors: her pediatrician and NICU doctor greeted me at the entrance. At first it felt dark & foggy… those first few hours filled with shock and uncertainty. The next few days were more of a blur as various doctors, ultrasound technicians, nurses, and social workers came by to care for her and fill us in on programs available for Emma’s care.
Depending on the special needs child, the village will look different for each family. Specifically with children with Down Syndrome, no two children are alike and will not have the same medical issues. There are different doctors for different seasons of care. I’m sure many we are seeing now we will not see forever, and new ones will come as she gets older too.
One major fact about children with Down Syndrome that I had to grasp early on is that everyone one of them will have some sort of developmental delay. It can range from mild, generally referred to as “high functioning”, to severe. Knowing this, one of the first major decisions I had to make was on her therapy treatment.
There are generally two different options families can turn to for their therapy care – state funded therapy (benefit of therapist coming to home and treatment is free for the first three years) or private therapy (travel to therapist and pay out of pocket/insurance). For various reasons, we chose the private therapy option.
The first therapy treatment we started was physical therapy. Emma began at 4 months old.
How cute was she? 99% of the time she is a good sport about things, but every now and then she is pretty much over it.
Now, at almost two years old, Emma goes to therapy three times a week and takes physical, occupational, and speech therapy.
Side note: I could go through and describe all the different therapies and fill you in on why Emma takes what therapy and what it does, blah, blah, blah; but I’m just not that kind of writer. J I do, however, have a handy link for you to visit. The National Down Syndrome Society (NDSS), they know way more than I do, and have all of the technical terms and such too. Just click HERE.
If there are any special needs warrior momma’s out there needing advice on therapy, I would tell you a few important things.
- The main thing is to make sure you like your therapists! You don’t have to be best buds, but there does need to be an aura of likeability between you and your therapist. You will be with this person for up to an hour a week (or more) for most likely an extended amount of time so this is important. You can also find yourself in small office spaces with them so it’s even more important that you both are compatible.
- Also, be fearless when it comes to your child’s treatment plans for therapy. If you don’t like something, talk about it with your therapist. If you don’t feel like the therapist is pushing your child enough, be fearless and speak up. Don’t be afraid to switch therapists, or programs if you feel like it’s in the best interest of your child.
- Lastly, be thankful and heap lots of praise, and encouragement on your therapists. It’s can be a rough job with frustrations and issues like any other. Not all children are happy participants and you never know what your therapist has gone through with their other patients before you walked in the door.
Overall I am more than pleased with Emma’s therapists, Julie Ann, Julie, and Mary. They truly care about Emma and celebrate with our family when she reaches milestones. It makes hauling Emma up to the offices multiple times a week much less painful! While there are still many unanswered questions regarding the future, having them a part of our little village has made the experience much more rewarding and enjoyable.
I can’t end this post without talking about one of the biggest milestone’s Emma reached just this week: Much to the delight and giddiness of our physical therapist Julie Ann, Emma has FINALLY crossed over the threshold from mainly crawling to mainly walking! She has been ‘almost walking’ since before Christmas 2013, so needless to say, finally seeing Emma walk across the room has been a delightful sight. Julie Ann was so proud! And so am I…