Friday, April 26, 2013

Sadie's new life goal

I don't know if I've written about it in the past, but I have a short list of life goals for Sadie.  Meaning, these are things I'd like her to achieve at some point in her life.  They are things I know will take years of working on and lots of practice.

One of them is potty training.  I truly believe that with the right communication skills, Sadie can be out of diapers...someday.  We are actually in the process of getting a shower seat/ toilet chair combo.  Once we receive this, I'm going to start toilet "timing" and just like she gets fed on a schedule, I am going to do my best to sit her on the toilet on a schedule.

Another life goal I have for Sadie is to be able to sit independently.  Sitting opens up a new world of possibilities.  And actually I'm hoping this can happen sooner rather than later.  If she can sit, she can take baths.  If she can sit, we can eliminate the car seat and she can use a 5-point harness seat belt (when she's big enough, of course...I know children now stay in car seats like until they're 8 or 9!).  If she can sit, she can sit on the toilet, which takes the previous goal to a whole new level, because then she can potty anywhere and not just at a facility (aka home & school) that has the right equipment to support her on the toilet.

I want Sadie to be able to do a standing transfer.  This means that she can lift herself from a seated position, with the help of another person, or a bar, to another seated position.  So, she'd be able to hold on to me and stand up from her wheelchair and move to sit on the toilet, or the car, or the couch.  Ultimately, I'd like her to be able to take a few steps, but I'd be happy with just a stand and pivot.  This goal keeps me from having to lift her when she weighs so much, and keeps us from having to get a lift in our home...which we might end up with anyway.

And I've just added a new goal.

Yesterday, Sadie had her swallow test.  If you remember, the last one she did didn't go so well.  They told me we shouldn't be feeding her and that she should be primarily tube fed, with maybe 5 bites per meal.  And I was so frustrated and angry, but just kept doing what we've been doing.  And Dr. Wendy told me we don't ever have to do another test again if we didn't want to.  Well, we had to do another test, because insurance told me they needed the test results to justify paying for the thickener.

I over-prepared.  I took the feeding therapist.  I scheduled the test as close as possible to when Sadie normally eats.  I've been feeding her in a similar chair at home that they do for the test.  And I didn't starve her, like they say I should.  And this time she didn't aspirate.  She drank nectar consistency, which is like one of those Naked Juice or Odwalla smoothies.  They not only recommended that we start doing more liquid, they told me to start giving her chunks of stuff to munch, like pieces of banana or avocado.  She is just getting so strong!

So, I've added a new life goal.  I want Sadie to drink from a straw.  I am realistic in that I don't think we'll ever get rid of the tube.  The tube is so convenient to give extra fluids and medicines!!  Sometimes I wish I had a tube...boy did I wish this when I was pregnant! Think of how much it would help with morning sickness and hydration!!  Anyway, I think she'll always have the tube, but if she can control her own drinking through a straw it would be a big step.  I don't know if she'll ever be able to hold a cup to her mouth, so using a straw keeps me (or someone else) from having to pour liquid into her mouth and risking a mess.

I truly think Sadie will be able to do these things.  And probably once we learn some more communication, I'll add a life goal that has to do with communication.  I really think Sadie has the potential to go far, and to live an enjoyable life, and to do great things.  She is an amazing person.

Do you have a special needs child?  What are your life goals for him/her?  Maybe you haven't thought about this before?  Maybe it's time to start... if you don't have something to always be working on, you don't go anywhere.

Sunday, April 14, 2013

From the mouths of Babes

When I was young my parents had friends, the Reynolds, who were part of a group of friends who all had children at about the same time.  But the Reynolds were different, their son, Jason, had suffered severe brain damage and was... well, like Sadie.  Jason was about my age, maybe a little older, and being around him as a little kid really effected me.  I still remember being curious, but a little afraid.  I was kind of a shy kid and got embarrassed easily, so I'm sure I had a lot of questions, but that I didn't ask them.  However, when I was about 5 my parents got divorced and we sort of lost touch with a lot of people my parents were friends with as a couple, and I don't have much recollection of being around Jason after about then.

I don't know about you, but I feel like my age group of people didn't really have a lot of interaction with kids with special needs.  I remember seeing them at school, but I never had any reason to talk to them, they were always in their own special class, and even though I was curious, I was a little scared of them.  I didn't know how to act around kids with disabilities.  I didn't know how to talk to them, and their behavior was not something I wasn't used to, so I didn't know how to react to it.

Now that I have my own child with special needs, I want to make sure that kids her age are NOT afraid of her or unsure of how to interact with her.

Today was our second week at a new church, and Sadie's first week in the Sunday School class.  I was so appreciative of how they accommodated her and made sure she had what she needed and wasn't in her wheelchair the whole time and got to participate.  But, I think the teachers were more appreciative of me bringing her there so that the other kids could be around her.

When I went to pick Sadie up after church, the teachers told me that she liked all the kids and they did really well with her. They told me she liked circle time and had made a little friend named Ben.  Ben came out when I was there so that he could say goodbye to Sadie.  Then Ben looked at me and asked me how Sadie's brain got broken.  I wanted to cry.  Not because I was sad, but because to Ben it was that simple, Sadie brain got broken.  I told him that Sadie got really sick before she was born and it hurt her brain.  The teacher standing there told me that the kids had lots of questions and she didn't know how to answer them, so now she sort of knew what to say.  I told her I welcomed questions and wasn't afraid to answer them.

Then I was told that Ben hardly left Sadie's side the whole time, in fact he even pushed her wheelchair back from the bathroom.  Then I was told that the teacher caught Ben whisper to Sadie, "when your muscles get stronger, you can come play at my house."

Today the kids learned in Sunday School that everybody needs to hear that Jesus loves them.  So, every kid in the class told Sadie that Jesus loves her.  Which is exactly what she needs to hear.  In this big world that is so unfriendly to children like Sadie, this group of kids understood that Sadie's brain is just broken and that Jesus still loves her.  I hope that today was a learning experience for every child in that class today, and I hope that they remember Sadie and that Jesus loves her and she needs to hear that from them.

Saturday, April 13, 2013

Dealing with Anxiety

I haven't been very good about blogging lately.  I was actually thinking this morning about quitting.  Then I thought maybe I should start a new blog called, "letters to my special needs child" or "letters to my children" or something.  But really, I write this to commemorate our journey, and I not only want to share our journey with others, I want to remember where we've been, because it's important to look back.  So, maybe I should be better about writing (between waking up every few hours all night, changing the diapers of two children, nursing, preschool drop-off and pick-up, making dinner, and working), because someday I'm going to forget the good times, the struggles, and the victories, and it'll be nice to go back and read them.

I've been struggling a lot with anxiety about the future (maybe that's why it's been hard to write).  As you can imagine, thinking about Sadie's future can be a little stressful.  And I'm an over-planner, so it's hard for me to imagine how I'm going to take care of Sadie when I'm not sure what her needs will be tomorrow, let alone 5, 10, or 20 years from now.  But what I didn't realize until I had Ezra, is that I'm just as anxious about his future.  I am just as equally uncertain about Ezra's future needs as I am about Sadie's.  The only difference is that lots of people have raised typical, healthy children before and I have lots of people to ask for help.

Some people eat when they're worried or anxious, some people don't eat at all.  When I'm anxious, I bite the inside of my cheeks and lip and tongue the retainer behind my front bottom teeth.  It's very uncomfortable, but it makes me physically aware of my anxiety, which can be helpful in trying to let it go.

So, how does one let it go when they're worried about the future?  Well, isn't that the million dollar question among special needs moms (side note: why is it that dads don't seem to worry as much about things?)  I thought I'd compile a list of a few things I do when I'm feeling anxious that help me feel better, even if only temporarily...

1. Call my mom.  I know not everyone has a good relationship with their mom, so call someone older and wiser than you, someone you respect and love, someone who can tell you you're doing a good job as a parent.  My mom doesn't always know the right thing to say, but she listens to my worries, and she tells me I'm doing a good job, and sometimes that is all I need to hear.  Because I think, if I'm doing a good job now, I'm going to stop doing a good job, and everything is okay, so it'll probably be okay in the future too.

2. Write.  Sometimes it's public blog writing, sometimes it's a private prayer journal, but somehow getting it out on paper makes me feel better.  When I blog, I am often seeking empathy from friends and family and the special needs community.  Sometimes I am just seeking accountability by making my feeling public.  And sometimes, how I'm feeling needs to just be between God and me.  I also think there's some value in writing down these fears and worries so that you never forget where you've been and what you've accomplished.

3. Exercise.  Do something active.  When you're body is working hard, your mind has a chance to clear.  I know that if I go for a walk or a run when I'm working out a problem in my head, I often come home with a solution.  It may be more about the fresh air than the actual exercise, but working through something physically can be very rewarding and lift my spirits, and clear my mind.

4. Get outside.  Like I mentioned previously, fresh air can really clear one's head.  When I lived in Oregon, it wasn't out of the question to drive to the coast and sit on the beach and just stare at the ocean.  There is something amazing and overwhelming (in a good way) about the ocean.  But you don't have to be near the ocean to get this.  Some of my favorite things to experience outside are sparkly afternoon water, the smell of freshly mowed grass, and the sound of a fresh breeze rustling through the trees.  I've also found that watching ants can be very calming, somehow their OCD-like behavior reminds me that if I just keep working on something one day at a time, before I know it, my big problem won't seem so big anymore.

5. Do a craft.  Sometimes I have my best ideas or remember some of my favorite memories when I'm sitting at my sewing machine, or painting a bedroom.  And if you're not crafty, get on Pinterest and lose yourself in the possibility of all the things you could do!!  It's a great way to escape reality for a while.  And if you are crafty, just think, you'll have created something!

Over the next few weeks we have a swallow test scheduled and a visit to the GI doctor, two things I dread.  I have been losing sleep thinking about how to plan for both of these so that I don't look like a fool, and so that I can best represent my child and her abilities.  I guess I need to spend some time doing some of the things on my list.  And I will try my best to give updates after each of these experiences.

Until then, I'd be happy for you to write in the comments what you do to help with worry and anxiety over your child's future, and let's all work together to keep the stress down!!