I never imagined this part of a life with Down syndrome: being super excited to meet another family of a child with DS. But it's true, finding out that a family has had a baby, or a new family has moved to the area is like welcoming a family to our "tribe", a tribe I never imagined I'd be part of but it's pretty cool!
I could have talked your ears off for hours yesterday. And so much more I want to say. First and foremost: be hopeful! There is so much out there for our kids these days. I can't wait to find out what Liam's passions are and to help him go for gold with whatever he wants. And now that I say that, I realize that this is what I'd say for my daughter as well. It's what we do for our kids. We help them to reach their potential.
Cling to the good stories, believe in the good stuff you hear. Surround yourself with that.
There are several different areas we have focused on and i have researched:
1. Neurodevelopment. This is our NACD program and I think it's the best thing we have done, bar none. (More on this below)
2. Diet changes, no gluten or dairy- people with DS are more sensitive to gluten and dairy and while I may not see hives or diarrhea when Liam eats these things, they are good for his long term health. With Liam I have to think about the long term. (the sensitivities did however show up on a blood test, so I know these foods are not great for him)
3. Supplementation. The first ones were probiotics, DHA and a multi vitamin specific to DS called Nutrivene D. Since then I have researched many more things and tried to implement them, though I am somewhat sporadic so I don't know if they are as effective as they could be. (Curcumin, Ginko Bilbao, etc)
4. Advocacy. Taking charge of your child's development. NO ONE is as invested as you are. Instead of always looking for the experts, remember YOU are the expert. Of course you need input and guidance, and hopefully you find some good "experts" who believe in your child, but remember, it comes down to your love and dedication. Your advocacy. Advocacy is going to be a big part of this journey. I research and have found amazing websites, blogs and forums. Rather than take questions to my pediatrician, I tend to take requests. (Hey Dr M, let's check thyroid, iron, atlanto axial instability, hearing, etc). IEP team? Oh, don't forget we are the most important members! (That's a whole other blog post)
You have to learn to trust your gut and do things that you feel are right. Others might disagree sometimes. Thats's ok. If you are wondering about trying a neurodevelopment program, you should just go for it and give it a whirl. If it's not going to break the bank. If you don't, you might always wonder what would have happened if you had tried it.
And I think it comes down to priorities also. What is important right now? Our thoughts have been over the last few years that our priority is our kids. The younger years create the opportunity for more time together, there is no full school day. It is time that goes by fast and it is a time of exponential growth.
Time and money? I think those things can be figured out.
Knowing that we are doing the best we can for our son who is going to face many challenges in life? Knowing that we are giving him the base, the foundation to help him succeed, that is important. The best learning comes from home, and with Liam's unique differences, we feel that we have the training and knowledge to feel like the experts in his life (that is not to say we don't need help, we do).
I have come to this place where I am today as a mom, slowly. Don't think this all came to me at once, that i am so on top of it. It's important to do one thing at a time. Otherwise it is most definitely overwhelming. So choose one thing, if you wish, and start. I'm here if you have questions or want support. Oh yeah, the other thing I've learned is that my best support and info has come from other moms. We rock!
And remember- be hopeful!
No comments:
Post a Comment