Riding A Horse

Yesterday Jackson started riding horses (there is a short video of it below this post).  We had been on the waiting list for hippotherapy for a few months so to finally get a slot was super exciting!  A lot of people have asked me what Jackson could gain from this, other than having fun of course.  I’m no expert on this type of therapy but I do know that horses make similar walking movements to what we humans do.  Being on the horse will hopefully “train” Jackson’s brain that the movement he is feeling is the movement he needs to make.  It will also build up his core strength and balance.  Jackson has an incredibly strong core (you should feel his belly muscles!) but his balance is still undeveloped.  Learning how to use that strength to balance and build up the muscles needed for balance will give Jackson a better chance of walking.  Also riding horses provide a ton of sensory input, which Jackson craves.  All in all it will teach Jackson a lot of skills he needs.

Jackson’s hippotherapy sessions will be 30 minutes long.  Yesterday he lasted maybe 15-20 minutes.  He started off very well, sitting up straight and really enjoying the riding.  But he slowly started deteriorating.  He would lay back on the horse or lean forward to lie on the horse.  You could tell it was hard for him to sit up for that long period of time.  Also, he had his legs spread pretty far sitting on the horse, a position he is rarely in.  He actually did better than I anticipated and it was so fun to watch him riding.  We will go back next week and see if he can hang in there a little longer.  I am sure it will take a while to build up his tolerance for a whole half hour session. 

Adding this therapy to our schedule made us have to rearrange some other therapies.  Jackson now has a very full schedule of therapies.  Every week day afternoon is now filled with a therapy of some sort.  The kid has a busier schedule than some business executives!  I always envisioned that someday I would be a soccer mom.  Running around town from practice and games, spending most of the day in the car.  Instead I am a therapy mom, running from school to therapy, spending most of the day in the car.  Not exactly how I imagined my life, but after seeing Jackson on Chester the horse yesterday, I couldn’t be prouder to be a therapy mom. 

Jackson riding a horse for the first time!

Happy

Well it seems I’ve gone from one end of the spectrum to the other.  Lately, I’ve just been happy.  I’m apparently the definition of am emotional rollercoaster this month.  The source of my new found happiness is my beautiful boy.

It seems to me that Jackson is making some noticeable progress.  The kid is just different lately.  One area he is progressing is in his standing.  The Guild School loaned us a stander while we wait for our insurance company to decide whether or not they will buy one for us.  It’s Molina so I’m not holding my breath.  Every night after dinner I have been putting Jackson in the stander.  When we first started he lasted maybe a ½ hour.  This past weekend he was in it over an hour one night and never once fussed.  His legs are getting stronger and he is standing for longer.  Yeah! 

Balance is something we are working on in occupational therapy along with giving Jackson the vestibular movement he craves.  Movement is what we are working on in physical therapy.  Jackson’s PT has him standing independently so that he can start to make the connection that he has a body separate from others and that he can move on his own.  When he is standing on his own the PT puts toys in front of him that are just a little bit out of reach.  This forces Jackson to move forward to reach them which will teach him that he is capable of making forward movements.  The PT is also tying Jackson’s feet to his and walking with him.  For some reason, all of these things are working with Jackson right now.  He is making connections and it’s so amazing to see.

To top it off, I got news last week that a riding slot finally opened up for Jackson at a local therapeutic horseback riding organization.  Next week Jackson will start riding horses!  Hippotherapy, as it is known, is very good for building balance skills and walking skills.  I don’t think I’ve ever been so excited about a therapy for Jackson.

One unhappy bit of news has entered my life.  Our little foster daughter Vivionna will be leaving us March 1^st.  Despite the fact that in the last couple of weeks she has been a “terrible two” (oh my lord!), I am going to miss her very much.  I’ve learned a lot from her about being a parent and especially about being a foster parent.  One disheartening thing I’ve learned is that our foster care system is severely broken.  The priority is not to do what is best for a child, but to do what looks best on paper and that which allows those who are making ridiculous/uneducated decisions to look good.  We still plan to be foster parents in the future, after a short break to focus on Jackson.  From now on though, I will enter into it cautiously.  I hope Vivionna will be a resilient child and rise above, only time will tell.

For now “…the true secret of happiness lies in the taking a genuine interest in all the details of daily life…” (William Morris).

Family

When I was in the third grade I came home from school one day and my mom and sister were leaving.  My mom patted me on the head and said “Tell your Dad we left him.”  For the next five years it was just my Dad and I.  A single man raising his daughter in the 70’s was a pretty rare thing.  Then when I was in the 8^th grade my Dad married Sandy.  And thus began four years of mini-wars with my “evil stepmother”.  I became pretty spoiled having my Dad all to myself for 5 years.  Sandy moving in on my territory did not make me happy.  Recently one of Sandy’s sisters said something to the effect that it was so wonderful that Sandy and I had always gotten along.  Sandy and I got a kick out of that and quickly let her know it wasn’t true!  I can write all this and laugh about it because Sandy and I are close now. 

About a year and a half before my Dad died Sandy started slurring her words.  One thing you should know about Sandy is that she is stubborn.  As my Dad would say “She is as stubborn as a mule”.  We tried to get her to go see a doctor about the slurring but she insisted she was fine.  Finally her siblings convinced her something was wrong.  She went and saw her doctor who couldn’t figure out why it was happening.  I thought she had had a stroke but tests showed she hadn’t.  Her slurring got worse and whatever was causing it went undiagnosed.  Then Dad died.  A couple of months later she got sick and the quest to figure out what was happening became more urgent.  She was having trouble with her hands and tripping a lot.  Finally one of her doctors decided to test her for ALS (aka Lou Gehrig’s disease).  As soon as I heard the letters “ALS” and Goggled it, I knew that was what Sandy had.  Sure enough 5 months after Dad died Sandy got the ALS diagnosis.  It’s been 16 months since her diagnosis and she is quickly declining. 

You may be asking yourself “What does this have to do with anything?”  I just spent 4 days in Denver with Sandy and it made me realize she is now a disabled person.  Just like Jackson.  A few years ago she was an active walker, community volunteer, sang in her church choir, played the piano, gardened, and loved talking.  Today, the Sandy I know is trapped in a body that is failing her, she can’t speak, and in her eyes I see a sadness, a longing to be her old self.  This disease is taking away a woman I’ve spent most of my life with.  It’s cruel, unforgiving, and heartbreaking.  The worst part is that it will define Sandy at the end of her life just like Jackson’s brain malformation defined him from his infancy.  Jackson teaches me lessons every day.  Now Sandy is teaching me some too.  The biggest, best and worst lesson is that no matter what you think your life is going to be like, at any given moment it can change, for better or worse, and you have absolutely no control over it.  Even when you are a control freak like me.  But most of all you should “Know the person, not the disability. In fact look past the disability and you will see a person - a person who has the same thoughts and feelings as anyone else.” (author unknown)  It is hard to look at Sandy and not just see the person she is now.  But when I look at her I remember all the good times we had, what a great cook she was, how she used to make me so mad, and how she gave a lonely little girl and her equally lonely Dad a family. 

This disease may kill Sandy, but it won’t kill my relationship with her.  I’m just going to keep adding the memories up until the very last second.  Disabled, different looking and different sounding aside, Sandy is still my mom and Jackson is still my son.  Beautiful people in different wrapping.  That’s all it is. 

To learn more about ALS go to: http://www.alsa.org/

Snapping Out of It

I think I am finally snapping out of my sad funk.  What I’ve come to realize the last couple of weeks is that I’m not going to ever be immune to these little funks.  As a special needs parent you come to live a life that is tinged by grief.  Well most of us do anyway.  There are some truly spectacular people (my husband is one of them) who never wish their child was “normal”.  They just amazingly accept the fact that their child has a disability and never look back.  I try hard to be that person but I just can’t get there.  There is always going to be a small part of me that will occasionally wish Jackson’s brain was fully developed.  With that comes the whole “I can’t do this, I can’t be a special needs parent, it’s too hard.” funk.  Throw in the fact that I miss my Dad more than I can ever say and down the spiral I go.  The real problem is how I deal with all this.  I know it is going to be a part of my life from now on.  What do I do about that?

Last weekend I had a date with my husband.  During dinner we were discussing how differently we view having a special needs kid.  Kevin told me about a quote he had recently read that was something to the effect that life isn’t about waiting for storms to pass it’s about learning to dance through them.  It was the perfect time for that quote to come along.  It got me thinking about my ability to dance through these storms that lie ahead, and how well I will dance through them.  Am I the weak, crumble at every crisis type or am I the pick myself up and move on type?  Or am I a little bit of both?  Most of my life I have been the pick myself up and move on girl.  But having a child changes your perspective.  And having a special needs child just plain changes how you look at life and live it.  When something happens to me, I can deal with that.  When something happens to my beautiful little boy, well that is a different story.  I guess in the end my ability to dance will be a crapshoot.  How well I dance is going to depend on my ability to accept this life my little boy has in store for me.  Either way I want to dance, and dance like nobody’s business. 

With that I leave you with a quote by Dan Zadra:  “Always know in your heart that you are far bigger than anything that can happen to you.” 

Daddy's Little Girl

I haven’t written a post in a while.  The truth is I’ve been sad lately, really sad.  I’ve been struggling with the fact that I don’t feel like I’m a good mom or wife.  I fear my frustration, lack of patience and general unhappiness is reflecting on my ability to be a good mom and wife.  I have become this person I don’t want to be.  I can’t figure out what happened to me.  A few years ago I had a teaching job I loved, I climbed a lot, I read book after book, I took long walks, I had free time to waste.  Now my life consists of therapy appointments, doctor appointments, poop filled diapers, laundry, and feeding times.  My reading consists of medical studies, the latest therapeutic methods, books on brain injured children and motor skills.  I haven’t climbed in I don’t know how long.  I have the hardest job I have ever had and I don’t get paid a lick for it.  I miss my old life.  I miss the days when the idea of a child was a little boy wearing a miniature toolbelt following my husband around the yard as they “fixed stuff”.  The reality of our child is hard.  Too hard for me sometimes.  I have so many fears about him.  I worry who will take care of him when he is older.  I worry he won’t get older.  I worry about how much longer I can carry him around.  I worry about what will happen if I can’t carry him around.  I worry that I am not the kind of mom Jackson needs.   I worry that I’m not cut out for this.  I worry that I am so incredibly selfish because I miss my carefree life that I won’t be the mommy Jackson deserves or the wife that Kevin does. 

All my life if I’ve ever had a problem that seemed too much for me all I had to do was call my Dad and he helped me through it.  My Dad died almost two years ago.  I really need him right now.  I need to hear his voice and I need him to tell me that I can do this.  What happens when that one person you need isn’t there anymore?  How do you get through the seemingly impossible stuff?  I feel like a fish flopping around on a deserted beach.  You see, I know my Dad would have the perfect answer for me.  My mom left when I was in 3^rd grade and it was just my Dad and I for the next 5 years.  He raised me by himself.  I never asked him what that was like for him.  But I have a feeling he might have felt the same way I do right now.  I’ll never know though, and I have no idea how to get through this without him.  I guess being Daddy’s little girl for all these years is finally biting me in the ass.  The days of relying on Dad to help me through tough times is past.  I’ve got to figure out how to get back in the water by myself and quite frankly I don’t want to.

I love Jackson so much it hurts, it really physically hurts.  And I know for a fact that there is not a better man out there than Kevin.  I don’t deserve either one of them.  Funny lady Carol Burnett once said “You have to have faith that there is a reason you go through certain things.  I can’t say I am glad to go through pain, but in a way one must, in order to gain courage and really feel joy.”  I hope that I can get through this tough time in my life so that I can gain some courage and feel joy.  I really could use some of both right now. 

Happy New Year

I’m not real big fan of the New Year celebration.  I’d rather stay home than be on the road with a bunch of drunks.  I’m usually in bed before midnight (this year I made it to 10:30 p.m.).  I didn’t even realize it was New Year’s Eve until about 3 p.m. this year.  I’m also not a big resolution person either.  I have good intentions (don’t we all) but I never follow through with these resolutions so I have kind of given up on them.  Maybe it’s because Jackson was so sick in December and it was a really difficult time for me, but for whatever reason I feel kind of introspective about 2012.  There are things I decided that I am going to focus on this year.  I say focus because they may or may not be achieved.  I don’t want to get my hopes up and then have them crushed (I still have a love/hate relationship with hope).  So focus it is.  Here are my focus items:

1. Jackson walking.  I really want Jackson to walk.  More than I want to hear “I love you Mommy” come out of his mouth.  I want him to experience getting to move from one place to the next all by himself.  I want him to see the world upright.  I don’t want him to spend his life in a chair.   I can’t make Jackson walk and this focus may be one I have for the next 5 years.  What I can do is work harder to help him walk.  I can stop carrying him around.  I can start making him stand up for long periods every day.  I can get him a stander (if my good buddies at Molina Healthcare help me out).  I can make him “walk” around the house to get from the floor to the bath, or to bed, or to his highchair.  I can read these books I bought about motor control and how to implement it in my disabled son.  He may not like it, my back surely isn’t going to like it, but I have to do all I can to help my boy walk.  So I will.

2. Jackson communicating.  We have the iPad.  The school downloaded the $200 communication program (Proloquo2Go) for us.  I need to learn how to use it, then I need to teach Jackson how to use it.  I kind of feel like Jackson isn’t ready for it.  But I have underestimated my kid before so I am just going to give it my all.  Maybe he isn’t ready, but maybe he is.  I would rather try than not.  Anything that would allow Jackson to be able to express his wants and needs is something that should be a huge focus for me.

3. Yoga.  This one’s for me.  I love yoga.  I really, really love it.  I haven’t done it since I was pregnant with Jackson.  I miss it.  I miss having a relaxed, stretched body.  My body is starting to feel the effects of carrying Jackson around all day.  I need to get my body back to a happy place.  I have no self discipline to do it at home so I need to find an affordable class and someone to watch the kids.  I will find a way!  I will focus on Yoga! 

Henry David Thoreau said: "It is reasonable that a man should be something worthier at the end of the year than he was at the beginning."  I think so too Henry.  Hopefully I will be.