Friday, August 17, 2018

Like Feeding a Baby Bird

There was a baby bird on our patio outside our apartment today. I vaguely heard it for a while, but didn't stop to focus on it for a long time; I was so busy with my kids. After several hours, I finally went over to the window to see why the chirping hadn't stopped yet. 

And there was a baby bird, feathers just barely coming in, chirping and chirping so a parent would come feed it. It tried to fly, but was still too little. I put out some water and crumbs for it, hoping that it would eat, but it still just called and called and ignored my attempt to help.

Eventually, the daddy cardinal came back with a bug for it, and plopped it into the eager mouth. And again. And again. Each time, it had to fly away to find yet more food. As the father flew away, the baby bird chirped piteously and tried to fly after him, just far enough to a tree with branches only a foot from the balcony railing, then perched and continued to chirp.

I went about my business, sometimes a little annoyed by the constant chirping that was distracting me from my work. 

Then I stopped to imagine what it must be like to be that daddy cardinal. I thought about how much it was like raising a special needs child. 

Most people don't stop for long to think about a special needs child until you REALLY meet them. 

You go about your business, occasionally tuning out a meltdown at the store, or reading an article about a family with a special needs child. But it doesn't really hit home until...

You become friends with a family that has a special needs child. You see the massive level of demands and feel bad for the family, maybe try and help out, like how I tried with crumbs and water. 

BUT, nothing can replace that overworked, exhausted father who must have been beyond worried that their baby escaped from the nest. 

Now they need to find that baby and give it special care all while managing the other babies in it's nest. Do those other babies resent the father for being gone? Are they going hungry or not getting enough because the one bird is taking up so much of the father's energy?

So again, and again, and AGAIN the father cares for that baby bird. It goes unnoticed by everyone- the searching for food, the ache in his wings from constantly flying to find food, then return to his lost baby, then go back to check on his other nestlings. 

He worries that his baby might get hurt- it can't defend itself. He worries that the baby will die on it's own- it can't find it's own food. What if a well meaning person comes along and tries to help, but the help they offer does more harm than good? 

So even though it is beyond exhausted, the father continues to fly back and forth. 

That is exactly how raising a special needs child is. That child needs extra help, extra supervision, and extra attention. You worry MORE about that child because they don't "stay in the nest", as much as you want them to.

Maybe you will be offered help. Perhaps a government agency puts you on their 10 year long waiting list, or the school offers "appropriate" services. Maybe a friend offers to watch your child for an hour. 

As grateful as you are for those things, sometimes, it still feels like crumbs. 

So you continue to feed your baby bird, wanting to cry sometimes because of how tired you are. To the point where words cannot adequately describe it. 

When all of your body physically hurts and aches because of the level of service you have given your child day and night for years. 

When you are so emotionally spent on the constant battles fought for your child for years that you have no feeling left for yourself.

When your other children act out because they crave your time and attention and energy, but you are so depleted from your special needs child that you can't give them the effort they need, as much as you want to.

When your marriage is struggling for the same reasons.

When you wonder if you will ever be able to save enough for your child after you die, and never mind being able to retire. Ever. 

And yet, that daddy bird will never give up on his baby. Just like for my two precious daughters, I will never give up. My husband and I will continue to give as much as we can to those girls, because that is what they need.

And that is what makes a parent. 

So once again, spread those wings, my friend, and fly. 

Sunday, August 12, 2018

SATB2 Awareness Day

August 22nd is coming up, and do you know what that means??? SATB2-ASSOCIATED SYNDROME AWARENESS DAY!!!!! Woohoo!!!!

Not everyone has a lot of time, so here are some ideas for those of us who are strapped for time with the start of school and everything:

1. Take a picture of you holding up 2 fingers to represent the 2nd chromosome and post it on social media with a #ShowYourSAS hashtag!

2. Post a picture of your favorite SATB2 superstar and use the hashtag #showyourSAS (or) #mySATB2kid. Take a selfie with one of the four selfie signs and tag the SATB2 Gene Foundation. Don't forget to use #MySATB2Kid or #ShowYourSAS. Download your selfie sign today

3. Change your facebook profile to use the SATB2-Associated Syndrome awareness day border

4. Go to the SATB2 Gene Foundation website HERE to learn more about SATB2-Associated Syndrome! 

5. Join the SATB2 Gene Foundation facebook page HERE. The stellar mom who founded the organization posts cute pictures of SATB2 kids, great stories, and ways to get involved with the foundation!

For those people who want to get more ambitious, here are some other ideas of what to do!

6. Go HERE to download a fantastic information flyer about SATB2-Associated Syndrome, and distribute it to your pediatrician, school, dentist, or anyone else that is awesome and wants to learn about our superstar kids! Don't copy the picture! The download (totally free, don't worry!) is great quality and amazing!

7. Donate to the SATB2 Gene Foundation or host a fundraiser! Play to your strengths! I work part-time at a gymnastics gym, and asked them to host an open gym night with proceeds going to the foundation! Another family wanted to do a casino night, and others have done raffles. 

Families can create online fundraisers through Facebook, or explore other options like bake sales in their local community

. Write a letter to the editor of your newspaper talking about SATB2-Associated Syndrome. It just may get published!

9. Do a presentation at your child's school/ daycare facility! Or if your other children want to present to their class, it is a wonderful way for them to get involved in a great cause and raise awareness at the same time!

10. Try out a disability! I loved THIS idea about a person who put on a disability awareness activity, and had people "try out" different disabilities. I have attended one of those before and it was very eye-opening!

BONUS: Write a letter to a parent of a SATB2 child expressing your support. Raising a child with a disability is so unbelievably hard! It is difficult financially, emotionally, martially, physically, and affects every aspect of your life! These parents need to know that they have a village out there!