Best products from r/downsyndrome

Congratulations on your new baby! My first daughter Penny was also diagnosed at birth and is a true joy. She is now a happy 13 year old who loves to read books and loves ballet. She also loves (and is loved by) her two younger siblings and her dad and me.

I agree with others on here that finding a local DS group will be really helpful and encouraging. There are good blogs and podcasts (which others have also mentioned) and you can follow hashtags on Instagram like #nothingdownaboutit #morealikethandifferent #theluckyfew #downsyndromerocks and more to find others who are posting about DS.

I wrote a book about the first years of life with my daughter Penny called A Good and Perfect Gift which I wrote as a way to encourage us all. I write a blog about many things in my life including having child with Down syndrome and what Penny has taught me about life. Here is one recent post. I've also collected seven older posts I've written about having a daughter with DS in a (free) pdf here.

I hope these resources will help. We can also exchange emails or set up a call if you would like. You can contact me via my website if that is of interest! I'm always happy to talk to new moms!

I second the sleep study. My sister has sleep apnea but doesn’t snore, and putting her on the sleep machine resulted in a lot of really positive changes. If nothing else, good to rule it out.

In the meantime, it sounds to me like she is seeking deep pressure input through her feet when she’s sleeping with you. There’s a few things I’d try- first, will she tolerate a foot massage before bed? If so, might be worth trying. You can also incorporate heavy work throughout her day for general regulation and sensory input. I’d also recommend looking into Lycra sheets that can provide pressure in a safe way throughout the night.

I’m a little hesitant to recommend a weighted blanket, because there’s little scientific evidence to support them, but since it would be for pressure/input at night and not to produce a behavioral change (which is what most studies are looking at), it might be something she likes?

Other things - melatonin? Magnesium? Chat with a doctor about gentle supplements/vitamins that might help regulate sleep.

Links:
Lycra sheets: https://www.amazon.com/dp/B07SS118P8/ref=cm_sw_r_cp_api_i_kJIHDb79N172S
Heavy work ideas: https://i.pinimg.com/474x/23/47/30/23473081aea1c975a74887c04fc2c5f6.jpg

My child is the same, Ds and ASD, non-verbal, but he’s 7, so cognitively around 1.5-2 years. Of course your brother is seeking comfort right now, poor guy. Masturbating is a stress-reliever, after all. There’s a book that has tons of helpful information and a website that might be helpful resources. Good luck.

Slanted writing desk is important.

Try Crayola's Color Me A Song to build interest in writing activities.

My very young kids with DS loooove to knock over items and clear off any table surface. We build a game into it: build a tower with 1" blocks. We take turns stacking the blocks, gradually increasing from 3 blocks to about 8. Once the child has built the tower they then get to drive a toy car into it and knock it down. Simple activity but it builds attention, executive functioning, motor planning, fine motor development, self-regulation, turn-taking, and cause-effect.

You can also paint with Q tips at an easel to develop proper grasp.

My other favorite fine motor game is Plan Toys Balancing Monkeys. I get a toy alligator and then do the song 5 Little Monkeys Swinging In A Tree (but I up it to 6 monkeys to match the toy).

Paul Daugherty wrote a book called "An Uncomplicated Life" (On Amazon here) about his daughter with DS. He quotes her and does a good job helping you "hear" her in the narratives. I own a copy, but I know you can get it at most libraries, especially if they have an ebook selection. I would check out that book for some help if need be.

Congratulations! It's ok to grieve for the child you thought you were having, make no mistake. But you are going to love the heck out of this baby. You are in for so much joy that you could not have even imagined before this.
I recommend this book, it will make you feel much less alone.