Monday, March 18, 2019

The Oxygen Mask Analogy

Just about everyone has heard the oxygen mask analogy. That you are on an airplane, and the cabin loses pressure, so oxygen masks drop down. You are always instructed to fix your own mask on first, then assist the people around you. 

Sounds pretty straightforward, right? Special needs moms get this line all the time. That we need to fix our own oxygen mask on first. Take care of ourselves first before tackling other things. 

Here is the flaw in the analogy. I feel like when people think of this analogy, they imagine a nice family sitting side by side in an aisle, and you place your own mask on, take a nice breath, and then adjust your kids' masks in place. 

Here is what I picture:

The cabin loses pressure, and I am sitting in an aisle in the middle of the plane with my baby. My son is up near the front of the plane looking at the engines outside the window while my older SATB2 daughter has locked herself in the bathroom at the back of the plane.

Now, the pilot loses consciousness, so my husband has run up front to take control of the plane not crashing. I am holding my breath while I dash all over the plane- fixing one child's mask on, dashing back, maybe stopping for a quick gulp of air before I run back again to fix another child's mask.

That is the natural instinct for parents. I remember imaging what scene would look like if I did put myself first. I would be sitting there, maybe with one kid next to me with an oxygen mask, breathing fresh air while I knew my children were desperate for help. Needing me, but I wasn't there because I was too focused on my own comfort. 

I wouldn't be able to live with myself. I HAVE to help my kids.

So I HATE that stupid oxygen mask analogy that I hear all the time!

New Canoe Analogy

I heard a new analogy from a special needs mom that I greatly admire. 

She said to imagine that you are in a canoe, paddling upriver. You are paddling as hard as you possibly can, but then realize that your canoe has holes in it, and you are beginning to sink. 

So what do you do? Keep paddling?

No! You will pull over, kick everyone out of the boat, and patch up the holes. Once it is fixed, you will probably take the canoe out yourself to test it, and make sure that it will support your weight.

You need to know that the canoe will not let in any more water. You want to know that it is safe for your family to ride in. 

Then you slowly add family members back in before starting off on your journey again, now with a repaired boat. 

How Do I Repair My Canoe?
Everyone is always running around telling moms to make time for "self-care". Totally honest here- I'm not sure what that looks like. 

I always picture me getting my hair and nails done when I hear "self-care", but that doesn't help me feel better at all. Maybe until I get home and realized that I spent therapy money on a manicure that will wash away with the sudsy dish water. 

It was explained to me that "self-care" is something you do that helps you feel like not just a mom. 

For me, that is reading, talking to friends, taking classes, doing plays, running obstacle course races, and writing. 

Here again we will run into problems- who is going to watch the kids while we have this time? How can I afford to take classes when all of our money is going towards our kids? 

BUT- I also know that it really is important, and will try better to put myself as a higher priority. 

Monday, March 11, 2019

700% Mom Days

I am a firm believer that people prioritize what matters to them. And you see people who do incredible things because they set their mind to it and give 100%!

I have a cousin who has done a phenomenal job of eating right, working out, and he looks amazing! He really put his mind to it and has achieved some very aggressive physical goals! He is truly inspiring!

I have another friend who has the happiest family I have ever seen. Seriously, they are always smiling, she and her husband are always goo-goo eyed over each other, and they are so stinking cute!

There are so many inspiring role models I see that I would love to emulate! 

But now, I run into a recurring problem. 

I want to give 100% to my kids- to teach them, love them, and play with them. I want them to be happy and emotionally well-adjusted.

I want to give 100% to my husband- to support him, love him, and keep our marriage strong, because the vast majority of families with special needs kids involve divorce.

I want to give 100% to my special needs girls- to do therapy, make sure they have a better tomorrow, are taken care of and happy.

I want to give 100% to my gifted son- to encourage him, help him manage his emotions, to challenge him and keep learning interesting.

I want to give 100% to making my house a home- having it relatively tidy, meals cooked, with floors vacuumed. (because a messy house= an emotionally messy me, and babies eat crumbs)

I want to give 100% to my physical fitness- to finally lose those last 10 baby pounds, to feel healthy, to be strong and be able to keep up with my kids. 

I want to give 100% to maintaining my own sanity- taking time for myself, having a hobby, being a good role model for my kids. 

That is 700% y'all. And that doesn't even include a full-time job that many moms have! Or my church work, or volunteering, or taking care of changing air filters or getting that alignment done on the car. 

I wish I had some awesome advice to give on how to manage everything. 

But I don't. 

Sometimes there is no dinner made, and we have cold cereal, and I wonder if my children will grow up to have dreadful eating habits.

Most days in the last few months, I haven't made it to the gym because I am too exhausted physically and emotionally from managing three kids who are all very, very high maintenance in their own ways.

But that is okay. I do my best, and I'm sure that everyone out there does too. 

Even when we have bad days, we know that tomorrow is a new day, and we can get up and try again. 

That on the day when we need a break, when we end up watching some completely pointless tv show and sneakily eating the kids' Halloween candy, we can say "Today I am recharging." knowing that tomorrow is another 700% day.

And we will continue to give 700% every day, because that is what we moms do

Monday, March 4, 2019

Not Disabled Enough

I encountered a new prejudice targeted at me that I hadn't experienced before. 

When Chelsea was very young, I always felt the need to fight tooth and nail against "regular" people being mean because my baby was disabled.

Now with Lily, I am heading into the years ahead with a more relaxed, experienced air. I have done this once before, and I can do it again, and having a kid with a SATB2 diagnosis isn't the end of the world.

So when Lily was diagnosed, I headed down to the early intervention office and got her all signed up for therapy classes. Here is where the story starts:

I was in class with Lily, and had been going for a few weeks. I was starting to get to know one of the moms, and I thought we were becoming friends. She had a daughter a little older than Lily, and they were working on the same skills- crawling, pulling to stand, etc. 
Picture is Lily with our awesome PT!

As we were finishing up class one day, the physical therapist asked if we were practicing the therapy homework suggestions she gave us each week. 

"Oh yeah!" I smiled. "We love doing therapy together; it is so much fun! We do our work every day."

Because it is truth! I enjoy spending time with my baby, and most of the stuff that is assigned for therapy is pretty fun- stand in front of a mirror, crawl up stairs, blow bubbles and try to reach for them.

The other mom gave me a funny look, almost patronizing. "Well, I'm sure it is easy for you to do therapy since she is getting the hang of it. The rest of us have to work much harder." she said, and left. 

I found out next week that she quit because she didn't like the positivity I had about my child's disability.

Message: You don't belong in this group because your child isn't disabled enough

I have developed a much thicker skin over the years. But I want to discuss this mentality a little bit. 

Because I get it!

I was that mom when I had Chelsea.

I remember going to classes and seeing kids with Autism or Down Syndrome learning to walk and babble much, much faster than Chelsea was. 

I remember crying, wondering what on earth I was doing wrong that my baby wasn't developing. Wondering if there was some secret that everyone else knew that I didn't.

And was I ever resentful! I was so upset, knowing that I was working so so immensely hard, for hours every day, while other moms just seemed to coast through parenting without exerting much effort.

And it didn't seem fair.

So I don't blame the other mom who was upset that I seemed to be happy and doing well with my baby. I've walked miles in those shoes.

And let me tell you, those shoes hurt. A lot.

And I have walked in the shoes of a parent who feels isolated from other special needs parents because it seems like their baby's disability isn't as serious as THEIR baby's. 

So they automatically dismiss my concerns and feelings, because my problems don't seem as big.

It made me think about how I parent. Sometimes, it is easy to dismiss one of my children's concerns because their issue seems so trivial.

But to that person, that is their next big hurdle, and they are focusing all their energy on it!

So no matter how big or small someone else's trial seems to us, let's just cheer each other on! 

The world needs more cheerleaders and fewer critics. 

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.