Heartwarming Video

I saw this video on someone's blog, and it really warmed my heart. I just love it when people with disabilities just don't make that disability into a major defining trait in their lives. It's kinda an afterthought. They don't view themselves as people with Down syndrome. They view themselves as people who have struggles and trials like the rest of the human species.



But I can't help but feel that people with Down Syndrome have an advantage over people with lesser known genetic/chromosomal differences. When this young woman is out in society, shopping, driving, socializing, people would understand if she has a hard time with something or acts differently. It's kinda like - hey, she has challenges here and there, but that's fine. It doesn't detract from her as a whole.

When people's challenges are obvious, they want others to ignore the differences. But when someone's challenges are hidden, I think it's best to be outspoken about them.

I wonder what will be with Adi. She is undiagnosed, and at almost three years old, her development so far is similar to her peers with Down Syndrome. When she is ready to be part of society as an adult, I wonder if she will be as accepted as this young woman in the video, or if she will be seen as just a misfit.

I mean, when people know that someone has a challenge, they view the person as someone who is overcoming challenges and beating the odds.
But if a person seems ordinary to begin with, but on second glance you notice some things that seem off, people view that negatively. Why is she so slow and clumsy? Why can't she just speak clearly? No one would think that about a person who they clearly see has Down Syndrome.

I like how the mother of the young woman in the video said that she is proud of her daughter for getting a driver's license, but she's proud of all her children. She never treated her daughter differently.

Would I be able to do the same for Adi? I'm reminded of the switch from elementary school to high school. In 8th grade, we were the seniors. On top of the world. The big graduates. A few short months later, we are at the bottom of the totem pole as nerdy freshies.
Somehow, if the disability is obvious, the individual is put at the highest level. The oldest and coolest kid in elementary school. They climbed to the top. But if at first glance the individual looks typical, they will be held at a different standard. Adi may grow up to function at the same level as the young woman in the video. But I am afraid that instead of being a cool kid, she'll be regarded as one of those lowest-rung members of society that have a long way to go to be fully accepted. All because her challenges aren't as easily recognizable on her face like is the case with people with Down syndrome.

What is my point? I guess I'm just explaining to the world, and to myself, why I can't act as if there is no disability (the way the mother in the video raised her daughter.) The video is only cool because we all know she has Down syndrome, but she is living as if she does not. Imagine if we as viewers couldn't tell she has any genetic or chromosomal disorders. We'd all think it's a worthless video. Who cares if a 30 year old can drive? Or go shopping or hold down a job.

I don't know if I am restraining Adi, not letting her get as far by keeping her special needs at the forefront. After all, 9th graders are one level above 8th graders. It's just the way they are perceived that is different.

So is it worth holding Adi back a bit so she is perceived in a better light? I don't know.
I also don't know if I'm making sense... just some thoughts that cropped up watching this great video!

I Asked for This

I started this post back in November. I put a lot of heart into it. I really searched my brain for words that can convey what I am feeling. I'm not a very expressive person, so I just gave up. It was eating up too much emotional energy. But now I decided to finish what I started.

November 2010:

"Focus on Special Needs!"
"Guest speaker in the auditorium today during lunch will talk about special needs. Anyone who is interested is invited!"

That is what I read on the signs hanging in the hallways and in my eleventh grade classroom. Each month, our school had a different "Focus" on an aspect of chesed such as kiruv, chesed at home, and special needs. There were projects done, articles and poems handed out, goals set and met, speakers invited... all part of the experience.

 {June 2011}

I was pretty interested in special needs. Our school had regular visits from schools like Otsar, HASC and Beis Ezra. We did fun activities together- about 10 - 15 girls were signed up to participate, and I was one of them.

So on that afternoon, I gathered my sandwich and headed off to the auditorium. This was a topic that I liked, and I was looking forward.
I don't remember most of the speech, but one part I will never forget. The speaker quoted a statistic of how many children are born with genetic or chromosomal disorders. And then she translated it into practical terms.

"Ten of you girls sitting in this room will likely have a child with special needs." I don't remember how many girls there were, and I don't remember the number she quoted. But what I do remember is feeling:
How many of these girls would really accept a child who is different? 
And how many would accept this child happily? 
Who here will be devastated with the news? 
And who will give their child up for adoption? That's not likely, is it? Especially since they are all interested enough in this topic to come to this speech. 
What kind of start will these children have if they are born to someone who needs time to come to terms with the child's condition?

 {June 2011}

That's when I thought to myself... if there are ten neshamos waiting to be distributed among ten choice girls in this room, I'd like to be chosen. I know I will accept the baby. I know I will love unconditionally. Hashem, I think I am up to the task of raising a special needs child. Let me be one of the ten.

So yes, I did ask for it.

{June 2011}

All throughout high school I worked with individuals with special needs. Not just kids, but adults, too. (So I wasn't just enamored with all the cute kids running around being funny, adorable kids. I knew kids with SN would grow up to be adults with SN.) All the people who visited our school were medium to high functioning. And that's all I knew about. I didn't know there were other people that were affected much more severely by their condition.

{June 2011}

So I guess I did get what I am able to handle.

What helps me understand my role in mothering a special needs daughter is to first realize that I didn't lose anything. I didn't lose a typical daughter, a daughter for whom I bought shoes she isn't able to wear, a daughter whose wedding I was planning... I didn't lose it.

What my daughter has isn't a cold or a stomach upset or even a heart defect. It's not something which you can take away and be left with a healthy child. My daughter, like any of your kids, IS whole. It's in her genes, and she is presenting exactly what her genes are coding. Which is pretty cool! ;)

 {June 2011}

But truly, if G-d wouldn't have given my daughter to me, or yours to you, they would have been born to a different family. That's the way I choose to understand it. The choices aren't: a)get baby girl with syndrome b)get baby girl without syndrome. They are a)get baby girl with syndrome b)someone else gets this baby girl with syndrome.

{June 2011}

To me it's not even a question! I'm glad my daughter was born into our family.
It is what I asked for, after all. :)

{June 2011}

A Few Things

Tisha B'Av was alright. I fasted pretty well. I rested a lot and didn't even feel weak for the most part. I have a little headache now, though.

Part of what made it easy on me was that the boys are big enough to understand that they should not bother me too much. They took care of themselves. I didn't have to feed them at all; they took food themselves. They brought me Adel when she cried. They kept an eye on her when she was playing in their room with them while I stayed in bed. Some mothers told me they got new toys and games for their kids to keep them busy. I explained to the boys that although some kids get new things on Tisha B'Av, we are not supposed to get new things. It makes us happy. So I promised them something new and nice the day after Tisha B'Av, as long as they didn't make it hard for me. I'm proud of my boys for understanding and acting so maturely!

We read a book about the story of Tisha B'Av. The boys kept asking me before taking a toy if they are allowed to have it today. They also waited until chatzos to play computer games. (I needed them to be on the computer so that they can be fully occupied without my interference.)

Tomorrow we are going to a gastroenterologist to test Adi for celiac disease. The geneticist referred us a while ago. I just haven't gone because I am afraid to get an awful doctor, like the ENT an orthopedist that we saw. Well, I finally bit the bullet and made an appointment. I have a separate appointment book/planner for Adel and all her therapy and doctor info. It's the binder type that you can order refills for.When I took it to write in the appointment date, I saw that half of July was not there. Huh? 
It took me almost a minute to realize that the reason it was not there is that the year is finished. Yes, finished. It's been almost a year since it hit me that there's something about Adel'eh that needs to be addressed. Last August is when it all began. (Actually it began before, but I was willing that feeling away. Far, far away.) So since the pages are back to back, half of July was on the back of last August. I hadn't realized it's been almost a YEAR.

The reason we are testing for celiac disease is that Adel doesn't digest her food properly. She has awful constipation and used to get bleeding rashes with every dirty diaper. She has a dirty diaper once a week or less and is in terrible pain whenever she goes. When I mentioned to the speech therapist that we will test for celiac disease, she started saying how she knows someone with celiac and they are living a full and normal life... going to seminary in Israel and all that. As long as the diet is controlled, everything is great.
It took me a moment to realize that she understood me wrong. She thought we are testing for celiac disease as the cause of all Adel's delays, and when we get her on the right diet, she will begin to develop normally. Oh, how I wish! We are testing for celiac disease in addition to genetic/chromosomal stuff. I think I might be one of the only mothers to whom celiac disease sounds appealing. If I can choose it instead of a genetic disorder, I'd take it in a heartbeat! But unfortunately, we are testing in addition, not instead.

I received a letter from my insurance saying that our geneticist is no longer in the network. I got so upset. We love him. Seriously. The experience we have when we go to him for an appointment is so enjoyable that I actually look forward to the trip. And now I'd have to look for someone else?
I decided to call his office and see if there is anything to be done. The receptionist had no idea what I was talking about it. She asked me to fax the letter. Well, guess what? The insurance made a mistake! The doctor isn't leaving the network. How could they make a mistake like that, type up the letter, and even give me the date until which he will still be accepting our insurance? I don't know, but I sure am glad we get to keep our geneticist!

So that's the story for now. Adel is falling asleep on the floor, so I better get going. We're heading to the library for an arts and crafts activity, and we better leave before Adel falls asleep!

It's the Little Things

Recently I dug up some old photos because I wanted to find a specific picture of Gedalya at Adel's age.
I love looking at pictures of the boys at Adel's age.

What I don't love is constantly thinking, "Wow, that's not even on Adel's radar! Will she ever be able to do that?"
It's the little things that get to me sometimes.

I love watching Adi do silly things, like slap her knees with her hands, one by one. Or raise and lower her legs one by one while she is sitting.
What I don't love is constantly thinking, "Is that her own cuteness? Or is that something stemming from her disorder?" The last time I thought, "Oh, what a cute little quirk," it ended up being grounds for an EEG.

While on the topic of "the little things," it's very interesting to observe that Adel is roughly the size of seven-month old Zusha.

weight: 21.5 lbs 15th %ile
height: 32.5 in 75th %ile
head circumference: 44.5 cm 7th %ile

Okay, she is taller, but by weight and head size she is the same as Zusha was at seven months. She doesn't seem so small to me, but she didn't really gain any weight since she was ten months old. (That's eight months!)
But - it does make for a more pleasant babywearing experience. See, I am able to find the little positive things amongst the little *sigh* things. Such as...

...watching her march around in her new shichalach! When I stand her up and hold her hands, she makes really high and exaggerated steps, bringing her footsies down with a STOMP. Zusha says Adel is the cutest girl in the world because other girls walk the regular way, but Adel walks this way.

I used to love being able to toss Adel's clothes from the washing machine into the dryer without a second glance. I don't dry any clothes with stains; I pre-treat and rewash. But she wasn't self feeding, so no food stains. She wasn't crawling, so no dirty knees. She has chronic constipation, so no diaper blowouts. (Maybe five in her whole life...)
Now that she is crawling and sometimes self feeding, I love having to check her clothes. And if the knee scuffs don't come out, I love it even more!
It's the little things that make me smile.

And I must say, I love looking at pictures of Adel at Adel's age, too!