Always get a second opinion, and then a third, and maybe a fourth.
As a lifelong rule-follower, it was easy for me to listen to every little thing the doctors told me. They’re doctors, so they know. I barely knew anything about Down syndrome at the time of my son’s diagnosis. So, how could I ever disagree with them?
But, when we asked our doctors about early intervention services, we were told that Nicholas was not far enough behind yet developmentally to be considered.
Okay. That’s good news I guess, right? That means he’s doing well. I talked myself into thinking his Down syndrome was just “not as bad” as other people’s children who were receiving early intervention services soon after being born.
As months went by, I sat with this information knowing that there was something wrong with it. I am a teacher, and I know that there are always services for people who are bound to be developmentally delayed. I wondered why the doctors were saying that it was too soon, and then started to doubt that information.
So, I reached out to my local advocacy group for help. If you have followed the blog for a while, then you know that it was a fate-like moment for me when I found out that not only did I know the head of this group, but her offices were moved on to your street. If you didn’t read the story, here’s the link: I was meant to have you, Nicholas.
This group is absolutely AMAZING! When my husband and I told them our story, they were appalled because Down syndrome is an automatic qualifier for services in New York, regardless of where they are developmentally. This means that no matter what, Nicholas is eligible! Not only did they help us get signed up, but they also called the doctor’s office for us to correct that information.
I was mad at myself for allowing Nicholas to go so long without services. I thought “oh no, I’ve done it now, now he will be even more behind in development thanks to me.”
Thankfully, I was wrong. Of course, the earlier you enter your child into services the better, but Nicholas has been thriving ever since he entered services! Each week, he receives teacher services, physical therapy, occupational therapy, and speech.
Here are some pictures from occupational therapy today!
And from physical therapy earlier in the week!
Oh, Nicholas, I understand your pain. Leg day is always a tough one. But, I would have never had him practicing standing up at his age if the therapist did not show me how to do it properly and why it helps!
I have realized throughout this process that these therapy sessions show me that Nicholas can do way more than I even realize if he is given the opportunity!
It is not the Down syndrome that makes me not try these things with Nicholas on my own, it is the fact that he is my first child, and I am not always sure when he should be accepting new challenges. To me, he is still a little baby, but to the therapists, he is ready to use all his muscles!
A major breakthrough for us was seeing him move forward after months of just scooting backward! I caught it on camera!
I can’t believe I ever wasted my time worrying about whether he will be able to hold up his head or roll over. He has far surpassed those goals already!
I highly recommend getting into early intervention services! Here are some things you should know before you get your little miracle into Early Intervention services:
The rules, laws, and expectations may be different depending on the state you live in.
Do some research on what is available to you! Some states have services that are free to the families, and some do not. Some provide in-home services, others do not. Get to know what is happening in your area.
Your child does not need to have a “label” in order to be evaluated.
If you think your child is delayed in one or more areas, you can request an evaluation. If they are delayed, even without the label of a specific disability, why not get help as soon as you can to bridge that gap? If they do not qualify for services, great! At least you know now that there is nothing to worry about. If they end up qualifying, that is also great, because now you know what your child needs to be successful.
There are people around you to help you navigate the system.
I have been talking to moms all around the country about this topic, and all of them said that they reached out for help when it came to signing their kid up. For us, it took going to the advocacy group and letting them help us get the referrals in. For other moms, it took reaching out to fellow parents and having them guide them through the process.
With the enormous disability community online, you should never feel as though you are going through this alone! I am lucky enough to be a founding community member of Able Finder, which is a Facebook group that helps parents in need chat with parents in the know. This is just one of many examples of easily accessible options for getting help!
Speech can start way before your child is babbling!
This is something that I didn’t know, and I absolutely love what Nicholas is learning in speech. He learns how to activate the muscles of his mouth in order to eat solid foods in a way that will foster proper letter pronunciation in the future. It is so interesting! We are also learning tons of sign language from our speech therapist!
Listen carefully during services.
If you’re a nerd like me, you are going to want to practice what you learned during the week with your child. However, you want to make sure you are practicing the right way so that you are not hindering growth. It is harder to unlearn the wrong thing than to learn the right thing the first time! It is also good to be aware of your child’s current goals!
Don’t cancel on your therapists last minute!
Some providers will be traveling far to see your child, so if you cancel last minute, they did all of that work to learn that they will not be getting paid for your session. Be cool, man.
If there is something that is being taught in your sessions that you either don’t understand or would like to learn more about, ASK!
I am far from an expert on this topic, and am still learning as I go. I will be posting more about this as we navigate through the program. I would love to hear from other moms and dads about their experiences with Early Intervention, especially if you are from a state other than NY!
Shout out to all of Nicholas’s awesome therapists! You guys rock!