Blog # 49~April is what?
April 2nd was “Autism Awareness Day.” Nick and I didn’t wear blue to show support or acceptance. Quite frankly, I forgot. I am down in the trenches trying to keep him from running the faucets full blast, pushing the popcorn button on the microwave and dumping out my cup of coffee all over the floor every single day. Seems to me they should have kicked it off on April fool’s Day. 🙂
April and autism awareness…..
I applaud these gestures. In the October archives (Blog #26~Down syndrome Awareness Month), I posted some pictures of iconic places lit up pink in support of breast cancer and shared some ways to support Down syndrome which is also during that month.
Here are a few light it up blue pictures…..
Chicago lights it up blue…..
The CDC estimates that about 1 in 88 children has been identified with an autism spectrum disorder (ASD), and a study released just last week suggests that number may be even higher. In the Medical Daily article it stated: “A recent government survey as report of more than 95,000 parents in U.S. exceeds previously recorded accounts. Now 1 in 50 schoolchildren between the ages of 6 and 17 are diagnosed with autism. The CDC found that boys are four times likely to have autism than girls which has remained true since it was first discovered.”
An epidemic………
Personally I would like to see the focus on more educational, behavioral supports and other treatment options. What is going to happen to our kids when they age out of the school system? There aren’t near enough employment opportunities, day programs or group homes for this rapidly growing population. In addition, I’d like there to be an easier path to obtain funding through the government.
I have spent the last year writing about Nick in this blog so that you can better understand the way he functions having Down syndrome and autism. I have crawled through the gutter like so many other parents. What I think we all want most is support. We also need understanding and compassion without judgment. That along with a night of uninterrupted sleep. 🙂
Yes my child is loud, try living with it 24/7…..
Yup…….
No, I didn’t change the light bulbs to blue on the porch or add lawn decorations like this person…..
I didn’t go out and get a *puzzle piece manicure. It wouldn’t last anyway with all the cleaning up of stuff Nick has dumped out… April archives, Blog #3~ Getting your Goat for the full list.
But I do have a salon appointment to cover the grays Nick has put in my hair this Friday. 🙂 That’s what is in my noggin this week. I will leave the lighting up campaign for everyone else and Nick with his flashing blue stim toy and blue water bottle… while I try to keep up in his world.
Seeing the world in blue, cool ……
~Teresa
*The puzzle pieces are used to reflect the mystery and complexity of Autism Spectrum Disorder (ASD.) It’s a puzzle that has yet to be solved.
Down Syndrome with a Slice of Autism 
Thank you so much for this posting. I have been having a little pity party for myself today questioning what our future will look like with Robert’s brain injuries and physical challenges. But getting a look at just one day of challenges with Nick reminds me of how lucky we are. We had 47 years of a great life and two healthy children so who am I to complain? Your blogs are so awesome and educational. I have two cousins that had autistic children and another cousin with a Diwns child and I had no idea what they or you really go through each day. Thank you for giving me a much needed kick in the pants and a reminder to count my many blessings. Keep writing Teresa, you have no idea how many people you are helping and it is not only people with challenged children. There will be a special place in heaven for mothers like you You go girl! Love and hugs from Texas.
What a great comment, Brenda! I too love reading this blog, hoping to get a glimpse of what my son’s future may hold 🙂
Kristin, glad you are enjoying it. Hopefully the path for your son will be smoother. I learn something new everyday and want to share and help others. Here’s to a good week 🙂
Thank you Brenda. There’s nothing wrong with having a pity party every once in awhile. It makes me happy to know that you are inspired. You have inspired me with the journey that you are on. Glad to give you a kick in the pants (that’s such a Texan thing to say) 😉 Best to you and Robert, chin up and let’s keep fighting the good fight. 🙂
TJ, thanks for sharing another compelling blog. The part that made an impression on me today is that you do not get a night of uninterrupted sleep. Mentally, I did a double take. I got how stressful you waking hours are, at least, I’m catching on about the randomness of Nick’s behavior. Sometimes I hesitate to read the blog because it just seems exhausting. But I think when Nick went to bed, you finally had some downtime. So does he get up in the middle of the night as well? TJ, thank you for helping educate me about the challenges of DS/autism. I also read the new study that reveals the new stats of 1 in 50 children having autism spectrum disorders. I can’t help but suspect it is food-related. Some o f the things I’ve read about the effects of GMO-foods makes me wonder. I think more funding and research should be brought to bear for finding the cause and the cure for this than for cancer. please keep up your excellent blog, I am so grateful to you for opening my eyes and my heart about Nick’s world. Blessings, Joleene
Joleene it goes in waves with Nick waking up. On average he may wake up 1-2x a week around 4am in the morning. I have it a lot easier than most parents who deal with this on a nightly basis and their child won’t go back to sleep. I put that in to raise awareness of what most parents have to deal with. I consider myself lucky in that respect. It is stressful but then Nick is so fun, loving and adorable that it makes up for all his shenanigans, well most days 😉 I totally agree about putting more funding into research, this is an epidemic. I to have great concerns about the GMO’s and a connection to health. Thanks for your thoughts and support. Yes it can be exhausting, but at least I have my work teaching fitness classes and always carve out “all about me time” to have fun too. Keeping the faith and hope too 🙂 xoxo