Sunday, February 24, 2019

SATB2 Chores

It takes a LOT of effort and practice to get our SATB2 kids to clean up after themselves. But it is well worth the effort!

RIGHT NOW, it is easy to pick up after Chelsea, and soooo much faster to just do it myself. 

RIGHT NOW, she throws huge fits about having to pick up, or wipe the table, or put her laundry in the washer.

RIGHT NOW, I have to not just get the house clean, but also that I have to teach Chelsea the importance of doing the chores herself.

RIGHT NOW, it is so much easier to not force her to scrub her hair or wash all of her body and just count soaking in the tub as getting clean.

RIGHT NOW, I often think about how fewer headaches I would have and how much more rested I would be if I just did everything myself.

BUT, I don't do that. I am trying to think about the future, 5, 10, or 20 years from now. 

EVENTUALLY, I don't want to be in my 60s and picking up after my 40 year old.

EVENTUALLY, Chelsea will need to know how to do her own laundry and be motivated to get it done.

EVENTUALLY, serious health problems will develop if Chelsea can't keep up with her hygiene. 

SO- that means that right now, I need to make Chelsea do her jobs, however big a fit she may throw.

SO- here is what we try to do daily to get Chelsea to learn to do things herself.

1. We have a morning routine to help her get dressed, make her bed, all the "Up and at 'em" type of jobs

2. We have her do daily chores that she gets paid for once a week if she does them every day. Right now, she is in charge of keeping her room tidy, picking up crumbs under the table after meals, and cleaning up the playroom.

3. We have a bedtime routine- bath, brush teeth, take medication, all the things she needs to do. 

4. We also assigned her a cooking night once a week where she cooks for the family. Right now, it is a lot of sandwiches! But her goal is to learn to make 6 simple foods this year.

Monday, February 18, 2019

The Quiet Baby

I get complimented at least daily on how well-behaved and quiet my baby is. And I always graciously thank them and say that she is by far my easiest baby. Because it is true! She is a very quiet, well-tempered baby.

But some days, those compliments tear at my very soul. 

Because my baby is very, VERY quiet. She doesn't babble. She doesn't coo. She rarely even cries or fusses. 

And babies NEED to do those things. That is what teaches them to speak. Because of the SATB2 diagnosis, speech will be very, very hard to come by. 

I remember with my (typically developing) son as a baby, I thought I would lose my mind sometimes because of his constant, incessant crying and very loud babbling and squawking. 

But he is now a kid hat never stops talking. And even though I do wish sometimes that he would allow me to have a little bit of mental peace, I am grateful 100% of the time for his speech, even if it comes at the price of no silence ever around him.

With my SATB2 baby, I work every day on trying to elicit ANY noise out of her, trying to get her to realize 'hey, I can make a sound!' 

If you have a baby or toddler and feel like your head is about to explode or ears drop off from all the noise, and wish that your baby was as quiet as mine, just remember that other moms wish their babies would make noises like yours. 

Tuesday, February 12, 2019

"That Problem"

When I was first learning about Chelsea's diagnosis, I went and met with a geneticist. He was supposed to tell me about the syndrome and advise me about the likelihood of this happening again in a future pregnancy. 

After he gave me information I already had (he had googled it a few minutes before meeting with me), he started to discuss the likelihood of another child having the same disorder. He said that it wasn't likely, but that if we did have a pregnancy that tested positive, they could "take care of that problem" for me. 

That one sentence felt like a punch to the gut. I remember sitting there, holding my sweet little girl, and looking at her, wondering if the whole world would only ever see her as a problem.

I wondered if people see her life as less valuable because she has a tiny piece of DNA missing. How many people would not hesitate to end her life because they want a "better" baby? 

Chelsea brings her own set of challenges, it is true! But no child is without any problems. And even with all those challenges, Chelsea brings joy to our lives. She is excited about every little thing, and has an infectious smile. 

I hope that others see the value in my daughter, instead of thinking of her as eyesore or problem to be kept away from the "normal, healthy" public.

I think that every life is valuable. Do you?

Thursday, February 7, 2019

When I Grow Up

I had a conversation last week that I couldn't stop thinking about.

I was in a meeting with some of Chelsea's therapists and teacher, and someone mentioned, "You know, Chelsea is doing SO well at following her visual schedule! That is really going to help her once she is working in a laundry room or something."

I know that many, if not most, life skills children are taught to do things like wiping tables, doing laundry, etc., not only for their own self-help skills, but also as a future job. Many of those kids do go on to be janitors and fold towels. I have nothing at all against that!

But that isn't what Chelsea wants to do.

Why is it that with typically-developing children, we ask them what they want to be when they grow up, and when they say they want to be a fireman, or teacher, or doctor, we encourage them and help them lay out a plan, but special needs children get overlooked?

Are Chelsea's dreams of being a dress model and dog walker less important? 

Should we assume that she will only be able to choose between being a janitor or laundry girl, and therefore only train her for those two options?

My vision for Chelsea's future is so much greater than that! I truly believe that Chelsea should get to do whatever she loves when she grows up.

Her most recent ambitions are 
1) A model
2) An elephant keeper 
3) A dog walker
4) A Disney princess

So you bet I will do everything in my power to help her achieve whichever career field she wants to! If she wants to help with the elephants, I will take her to the zoo as often as she wants and see what junior zookeeper programs I can find for her.

If she wants to be a princess dress model, I can learn how to do hair and makeup so she feels beautiful, and have photographer friends get pictures of her!

The most important thing is that I want Chelsea to be happy. To be excited to wake up in the morning and "go to work" when she is older. I want her to enjoy what she does, whether it is an actual paid job or a program that she attends and adores. 

I don't want her stuck in a job that someone assigned her and some company feels obligated to give a pity job to the girl whose is "slow", and no one talks to her during the day. Doesn't sound fun, does it?

Now, yes, I do know that that will require quite a bit of work on my part. My husband and I will need to plan and save and save and plan. 

But I have great hope for the future. 

I love Chelsea and love her dreams and hopes for the future, and I am determined to give her every chance at living her dreams.