Journaling about my kids (plural- wow!) for me; updates on our life for our wide circle of loved ones is for, well, our loved ones; sharing about life with a spunky toddler and the emotional highs and lows of having a wonderful baby with Down Syndrome is for anyone who might be on a similar journey.
Also see my blog: www.lupesmom.blogspot.com

Wednesday, August 9, 2017

Dear New Friends

Dear New Friends,
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.
And don't forget that it's never too late. It's not just bodies always growing, but minds too.  That being said, some things are good to start young.
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.
2.  Diet changes- 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.  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.

You have to learn to trust your gut and do things that you feel are right.  Others might disagree sometimes.  That'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.  Whatever you decide though is just fine.  Remember you can just do your best, and then accept that and be ok.
Seek out other parents and take the opportunity to make new acquaintances with those you might not have otherwise met, save this unique bond. that extra chromosome that brings you together.

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