Posts Tagged ‘Special needs’

The Detective

Out of sorts.magnifying glass

Emotional.

Just not right.

Overly dramatic.

Controlling/ bossy.

Out of her groove.

Not herself.

In a mood.

Goofy. <smh>

These are all phrases that I and/or Chloe’s therapist and/or Chloe’s Mimi said about her during her therapy session yesterday afternoon. None of us were frustrated with her. None of us were angry or short-tempered.

But we missed it.

All 3 of us love her and know her well. All 3 of us knew something was up. Was she tired? Not feeling well? Just out of routine since this was the first time to therapy in nearly a month?

We knew it was something. And we all gave her time and we listened. We all comforted and validated.

But we missed it.

Later that night I realized that it was her tummy. Her tummy wasn’t feeling right. She asked for food and more food and more food — much like an infant with tummy trouble. You know… the baby’s tummy feels awful, and he assumes it is because he is starving. Or at least he thinks more milk will help soothe his belly ache. Well, that’s what Chloe was doing so I knew it was her belly.

I got her ready for bed and put her to bed so she could sleep it off.

Then I got a text from her aide at school that she was going to stay home the next day. She was sick with a nasty stomach virus. Her tummy was cramping, she felt miserable, and it hurt to move.

Interesting. I immediately knew that Chloe had the same virus. She was feeling the same way. She didn’t have an attitude at therapy; it just hurt to move. She wasn’t averse to putting her feet on the ground to walk as much as she just wanted to keep her knees tucked up into her tummy where it felt a little more bearable. She didn’t lay back and close her eyes right in the middle of therapy to show that she was in control or to make a statement; she was literally glad to be still and close her eyes for a minute. She wasn’t making up the pain in her shoulder that she was crying about. And she wasn’t forgetting which shoulder was “hurting;” they were both hurting — she was hurting all over.

Poor baby.

We are all 3 lucky she didn’t just smack us across the face for not leaving her alone and letting her go to bed.

detectiveLife with a mostly nonverbal child is challenging. It’s guess-work. Even when I think I know her so well and know what she’s saying even before she “says” it, it is still guess-work at best. I am a constant detective, looking for clues. And I think I’m a darn good one most days. But it’s still guess-work, putting clues together and trying to make them make sense.

I was so happy that Chloe’s school aide was able to put words to how Chloe was feeling. The next morning when I texted the aide to find out how she was feeling (and probably how Chloe, too, was feeling), her answer was, “Like death.” Chloe had told me she felt yucky, but I didn’t realize she was feeling like death. I guess I’ll up my sympathy and carry on. ❤

Being Known and Being Missed

IMG_5296As we entered the building, there were greetings and cheers.

“Hi, Chloe!”

“Chloe!”

“Yay! There’s Chloe!”

Everyone was happy to see her. And she ate it all up. She waved at her friends and her fans alike as we entered into the cheer gym for the first day of practice for a new season.

What a great feeling to enter a place and be greeted by name by friends who love you and have missed you.

I’m so glad that Chloe has that feeling of acceptance and friendship in several different settings. At school each morning, she’s greeted energetically by sweet friends. At church, folks are glad to see her and greet her by name. And at cheerleading each week, when she enters, the room erupts with excitement.

Chloe over the years has gained confidence and awareness and the mutual respect of greeting others (usually, anyway!). She will look their way or wave or say Hi.

Friendship. Relationships. Being known. Being appreciated. Being missed when you’re not there. Being loved. Being seen and noticed.

Yes, Chloe matters to people. And nearly as exciting: those people matter to Chloe. J

Update

I just wanted to give you a quick update on Chloe.
As you may have been aware, Chloe has continued to regress in her walking over the last 6 months and longer. It continues to get harder and harder for her. Doctors have no clue why. Their best guess (and the best case scenario) is that her muscles have not been able to keep up with her growth spurts. Acting on that assumption, we have been doing some pretty intensive physical therapy and stretching/strengthening exercises. She also received some botox injections last week to help loosen those muscles for a few months. Her walking may very well get worse before it gets better– it’s all part of the process.
Truthfully, the onset of puberty may also be playing a role in this whole thing. We just don’t know.
Also, yesterday she failed her swallow function study, meaning she can no longer drink thin liquids. She aspirates thin liquids (water, juice, skim milk)– they go down into her lungs instead of her stomach. So we will need to go back to thickening any of those liquids that she drinks.
We haven’t had to thicken liquids in several years. It makes me mad, actually, that we have to go back to doing that. It irks me that something Chloe had overcome and beat has come back to cause problems. I threw a couple of emotion-spewing temper tantrums yesterday after the news, very much like a child would throw a tantrum. I hate it.
The good news from the swallow function study is that she coughed when she aspirated. That is an improvement from when she was younger — she was a silent aspirator; thus, we never knew when she aspirated or not. So at least she has a better cough reflex.
In all honesty, it is troubling that she has regressed in both of these areas at the same time. We are just praying that whatever is going on in her body can be stopped and can be reversed. Feel free to join us in praying for her if you want.
Just another example of life without a diagnosis… Is this the next step in the progression of her unknown syndrome? Or is this simply a reaction to puberty that she will be able to overcome? Or what is it exactly? and what’s the best way to treat it?
Since I’m a big don’t-own-it-til-it’s-yours person, we will just continue to work hard to combat all this stuff. Hopefully she’ll beat it. She is an amazing kid and the hardest worker I know — she definitely endures through the pain. Although she’s never said the words, I think one of her mantras that she knows is truth is “No pain, no gain.”
Keep it up, kid!

Fight

Chloe and I had our first screaming fight today.

Well, she was screaming. I was watching.

And, ok, it wasn’t the first, but it was the loudest to date.

She’s not feeling well. She had a cold this weekend and stayed home from school today to recover. She sorta went back and forth from feeling good and trying to dance to just feeling crummy and lying down.

Towards the end of the day when we were returning from picking up the boys from school, she was tired. And grumpy. (I’m not talking about her behind her back or saying anything she’s unaware of — she admitted to being grumpy. I mean, who could’ve denied it after the way she acted….)

She had asked me if she could have a turn with my phone. On the way to the boys’ school, I told her she had to wait until we got the boys just in case one of them called me for some reason. I needed to keep my phone.

Well, as sometimes happens, I forgot to let her have her turn with my phone after we got the boys.

So as we pulled in the driveway back home, she quite nastily demanded the use of my phone. I turned around and gave her the look. But the look didn’t have an effect on her. She just screamed again, “Phone! Phone! Phone! Phone! Phone!” signing phone as she swung her head back and forth.

I just watched in amazement, which was not the response she was looking for. So she took it up a notch. She slapped her arms to her sides and let out a holler.

My eyes just got bigger as I watched her from the front seat while the two of us sat in the van in the garage.

You have to understand that this girl went a big chunk of years showing no emotion; and even more years than that feeling the emotion but not knowing how to express it. But this screaming fit I was witnessing was an example of very well-expressed emotion. And it actually thrills me inside. When you have a child who is stuck in their body, unable to express themselves, and then they learn to emerge and express some emotion and communicate their feelings, it is truly amazing to watch.

That’s what was happening.

“Wow!” I said. “Are you being silly or are you grumpy?” I asked her, pretty surprised at her little show.

“No!!!” she screamed.

I asked again, “No, seriously. Are you grumpy?”

She growled and signed grumpy.

I strongly agreed with her that she was, indeed, grumpy and told her she could have a turn with my phone when we got in the house. But the promise of pleasure deferred wasn’t good enough for Little Miss Grumpy. Sitting in her carseat, she slapped her arms, threw her head all about, and screamed in a mocking way all sorts of nasty words, I’m sure. I just stood out of arms’ reach and watched her.

Knowing it usually helps to put words to her emotion, I explained the situation. “Ok! You’ve made your point! You’re frustrated that you had to wait, and I made it worse by talking to you about it, and now you’re really mad. Will you stop already??”

When she assured me that she was done with her fit, I moved in to help her get out of the car. But she wasn’t done with me. Her arms went to flapping, and her words went to flying, and I went to dodging and stifling laughter. She was really in a tizzy.

When I finally thought I was safe from the fit, I succeeded in helping her from the car and back into the house where she got a turn with the phone after a heart-felt apology.

What??!! Giving into her after throwing such a nasty fit?? Really. I mean, seriously, how could anyone turn down her request after that 5-star performance!?

photo credit: www.empoweringparents.com

Not Knowing …

Chloe, my 11-year-old daughter does not have a diagnosis. Since her birth, she’s been tested for everything under the sun. But all tests come back “Normal.” But my Chloe is not normal.

She has a normal MRI of the brain and spine. Her chromosomes all come back as normal also. Her blood work usually comes back normal and shows nothing. She has the doctors baffled, really.

For years her neurologist and her geneticist passed her back and forth, unwilling to “own” her. The neurologist would swear it must be genetic. The geneticist would declare it must be neurological. Finally they agreed that what she has is genetic — a syndrome of some sort — but they don’t have a clue what.

It used to really bother me that she didn’t have a diagnosis. I would spend hours and hours and hours researching on the internet, trying to find the answer. Somehow, putting a label on my child would give me peace or finality, I guess.

But the Lord ended up giving me a peace about it, and I was set free from having to figure out the mystery of Chloe’s diagnosis. At times it would be great to know the diagnosis so I could more closely relate to folks in the disability community who can list off their child’s labels. Other times, it would surely help as we make decisions for treatment. Some rare times, the thought of life-expectancy comes into my mind … does Chloe’s syndrome include a shortened lifespan?

But really for the most part, her lack of diagnosis doesn’t bother me. She’s Chloe. She’s perfect. And she’s mine.

But lately (as has sometimes happened in the past) a fear of the unknown has crept back up into my mind. I think I’ve mentioned here that Chloe’s ability to walk has greatly diminished in the last year. It has gotten so bad that she crawls around the house now since walking is so difficult. With the regression of her walking has also come the regression of her feeding. She prefers to only drink her Pediasure milk every meal. I’ve been successful most days to get her to eat something, whether it’s pudding, baby cereal, or a squeeze fruit packet. But if it were up to her every time, she’d just drink milk.

Doctors aren’t sure why she’s lost so much of her skill for walking. No one is sure why she has regressed in her eating. Their best guess for walking is that she’s grown so much that her muscles haven’t been able to catch up. If that’s the case, then there is hope for her regaining that skill. However, the doctors also mention apologetically that the truth is we don’t know what we’re dealing with. They always wonder if perhaps this is the next step in the progression of her unknown syndrome. While she’s never given us or doctors any reason to think her syndrome is progressive, the truth is we just don’t know. So when we go through times like we’re in right now, there is some fear.

While I have complete peace in who Chloe is and that God’s purposes for her are and will be fulfilled, I also have to admit that I just don’t know. I don’t know what the future holds for her. But you know what? I don’t know what the future holds for Elliot or Zippy either. In fact, none of us are promised tomorrow, are we?

I am a big believer in not owning anything until you’re sure it’s yours. You know what I mean? You find a lump in your breast and you’re sure it’s cancer and you’re filled with all kinds of fear …. No. That’s not how I do things. I don’t get worried about cancer until I know it’s mine. And I don’t worry about Chloe’s syndrome progression until I know it’s hers to deal with.

I know that her regression in walking is frustrating and limiting for her. Therefore, I have her in physical therapy 2 times a week. I know that if she regresses much more on her eating, she will lose the ability to eat orally, and I don’t want that to happen so we are doing tests and encouraging her to eat foods. I know we have to own those things so I’m dealing with them as they come.

I tell you all of this not to worry you (remember: don’t own it until you know it’s yours to own!) but so that you can pray for Chloe. And so that you can know what’s in our minds and hearts. I try to be fair and share the goods and the bads here on my blog. So here is some fear and some unknowns and some vulnerability.

It’s all in the unknowing…

And for the rest of the unknown … I give it to God. It’s His anyway, isn’t it? He loves Chloe way more than I do so His hands are good ones to place her in everyday. I truly believe that.

Look at Her!

I couldn’t stop looking at her. Her beautiful facial features were dainty and feminine. Her thin face and mature eyes revealed a girl transforming into a lovely young lady. Her sideways glance was that of a pre-teen girl annoyed at being studied and stared at.

Her body was transforming, too. Curves and developments also gave away the secret of a girl growing up.

She was beautiful. She was changing. She was growing up.

And she was my baby.

My 11-and-a-half-year-old baby. My baby girl changing before my eyes into a young woman. It was beautiful.

And it was terrifying!!

How in the world could this be happening? When did it happen? And what in the world am I going to do about it??

I think all parents have that realization — that shocking moment when it hits them full in the face … their child turning into a grown up. I think for all parents, it causes a bit of pride at the good-looking person their child is becoming. I think for all parents, there is some surprise and some fear of what the future holds. Surely for all parents, it evokes a measure of panic — have I done enough? am I ready? is he/she ready?

But for the parent of a child with disabilities? The fear and panic is certainly magnified.

Have I explained her body’s upcoming changes in a way that she understands it? Does she have any questions or concerns? Is she excited about these changes, or is she frightened? What in the world will I do as the changes progress? I mean practically … really … what will we do to handle those things? Is she happy with the “fashion” and “style” that I’m offering her, or is she wishing she could dress in a different way? Have we talked about boys enough?

Look at her. She’s changing. And she’s beautiful. I’ve got to be ready.

These and more (lots more!!!!) are the thoughts of a mom who has a girl-becoming-woman-creature-thing living in her house. A girl-becoming-woman whom she loves incredibly deeply. A girl-becoming-woman whom she doesn’t want to disappoint or embarrass. A girl-becoming-woman who will need way more support than she knows how to give. A girl-becoming-woman whose dignity she very much wants to protect.

And the mom is terrified. And begging for tips and pointers.

Look at her. She’s absolutely beautiful ….

What is up with DME??

DME is the only sales industry that I know of that the customer has to beg for attention and service!!

Please sell me a wheelchair! Please return my phone call! Please bring out a demo walker so that I can choose which to buy! Please call me back! Please treat me like a customer! Please, please, please! Please sell me some equipment!

Seriously! All other sales industries call you a whole lot more than you want to be called. Other sales industries show up on your doorstep even when you’d rather them not. All other sales industries act like their job and their paycheck depends on your business. Other sales industries return your calls!

Why is it then that I often change DME companies because of complete lack of attention? But then I find a different company and they treat me the exact same way??

I’m baffled.

DME stands for Durable Medical Equipment. For us, that means wheelchairs, walkers, bath seats, potty chairs, etc. I’m pretty positive that these salesmen surely work on some sort of commission. But it is so baffling to me that they can go a whole week or two without calling to give an update on whether they are going to be able to bring out a wheelchair for me to look at.

The current company I am working with is one I came to after deciding against another one that totally dropped the ball on service. Never called me back; wasted two solid months. Seriously. So I called this company looking for better service.

The thing is, we order equipment so seldomly that I forget how terrible the service is. So I enter into it thinking I’m going to be treated like a paying customer. And that’s the deal, maybe. Since Chloe has insurance and Medicaid, we actually are not paying customers. We won’t pay a dime for Chloe’s new wheelchair. But guess what? I’m the one who will make the decision and order the chair! Or not order it, if I so choose. Or switch companies again, if I so choose.

It is so aggravating.

Someone who understands this industry please explain this phenomenon to me. Why do I have to beg for service? And why does it seem to be an industry-wide problem???

I’ve been trying since before school got out for summer break to order Chloe a new wheelchair. Again this week, the current “salesman” /rep that I’m working with has waited more than a week to call me back when I believed that he was going to be bringing a wheelchair by for me to look at. Not once has this rep called me on his own accord. Seriously. I have had to call him every single time to find out what’s up. Ridiculous!!

Seriously, it kills me. Am I alone here?

 

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