Trying New Things

Jackson has been doing occupational (OT), physical (PT) and speech (ST) therapy since he was 14 months old.  It has become a way of life for us.  I believe on a foundational level all of this therapy has helped him in some way.  However, since having a kid like Jackson I have learned to think outside of the box, which is scary and difficult for me sometimes.  For example, I have always been a firm believer of medicine.  Doctors and experts have spent years creating medicine that will help “heal” our ailments.  But after trying numerous seizure medications on Jackson, and seeing some unpleasant side effects, I started thinking alternatively.  I found that our FDA approved medications may not be the only answer.  Since then I have viewed “alternative” forms of medication and therapy differently.  This has been a huge step for me and liberating at the same time.  To consider all possibilities and view new ideas with an open mind has helped me grow as a person and has made me a better Mom to Jackson. 

About a year ago I heard of a therapy called Feldenkrais on one of the online communities I belong to.  After doing some research online I thought it sounded interesting and looked for a local practitioner.  There was one here in Spokane so I emailed her.  After finding out our insurance wouldn’t cover this alternative kind of therapy I had to put it off since we were already paying out of pocket for Jackson’s horse therapy.  I put it on my “wish list” for Jackson.  Then something really big happened.  Jackson sat up by himself for the first time.  He had been riding horses for less than a month when this happened.  Seeing the change in Jackson’s capabilities after riding horses made me realize that we need to try different things with him.  Feldenkrais was always in the back of my mind, I desperately wanted to try it with Jackson.  Then in July I started reading a book called “Kids Beyond Limits” by Anat Baniel who was a student of Feldenkrais.  It is an amazing book and cemented my belief that we need to try different things with Jackson.  I found an Anat Baniel practitioner here in Spokane and added another item to Jackson’s wish list.  In the meantime my stepmom Sandy passed away and we found out we were going to get some money from her and Dad’s estate.  Suddenly Feldenkrais and Anat Baniel Method (commonly referred to as ABM) became a possibility for Jackson.  I am so thankful to my parents.  I would much prefer to have them here, but it touches my heart immensely that they are making this possible for their grandson.  I wish I could thank them and let them know how much it means to us.   

Last month I contacted the Feldenkrais practitioner and we met with her.  Ironically she had heard about the Anat Baniel practitioner too and had invited her to our appointment.  Both felt Jackson was a good candidate for their therapies.  We were really impressed with the methodology behind their therapy and felt like this was definitely something we wanted to explore for Jackson.  We had a couple more sessions with the Feldenkrais practitioner and then had one session with the Anat Baniel practitioner.  Next month we will do some more intensive work with them.  I am excited to see if these therapies will help Jackson progress.  I am hoping it helps him on some level that will be beneficial to his growth but I also don’t want to get my hopes up (continuing issues with my nemesis “hope”). 

One condition to trying these treatments is that they ask that the patient cease their PT and OT therapies.  The method and technique they use is contradictory to the traditional PT and OT method.  Jackson will have a better chance at benefiting from Feldenkrais and ABM if he is no longer doing PT and OT.  Making the call to cancel his PT/OT therapies for an undetermined amount of time was really scary to me.  I am so accustomed to this being Jackson’s life and his future depending on these therapies that it literally made me sick to my stomach to stop them.  I felt like I was jumping off a bridge and plunging into who knows what.  I guess that is what we are doing.  We don’t know if this therapy will help him, hurt him or have no effect at all.  As frightening as it may be, I think it is what we need to do for Jackson right now.  It’s a risk, but one worth taking.  As Arthur C. Clarke once said “The limits of the possible can only be defined by going beyond them into the possible.”  Here we go into the possible.

P.S.  Jackson will continue riding horses (hippotherapy) and yesterday he started aquatic therapy at a new facility.  These therapies tend to be less traditional and will benefit him while doing the Feldenkrais and ABM. 

If you are interested in learning more about the Feldenkrais and Anat Baniel Method, here are links to their websites:

Feldenkrais - http://www.feldenkrais.com/

Anat Baniel - http://www.anatbanielmethod.com/

Hole In The World

I didn’t think about the date this morning when I woke up.  I was thinking about the fact that today Jackson was getting his wheelchair.  I’ve had some mixed emotions about that.  On one hand I was excited for him to have a wheelchair.  It will definitely make transporting him easier and more efficient.  I absolutely hate the stroller we have and he doesn’t seem well supported in it.  The wheelchair will also be great for his classroom accessibility.  On the other hand, my son will have a wheelchair.  It will make him stand out as “different”.  The term itself, “wheelchair”, indicates disability to me and I don’t like to think of Jackson as disabled.  In the end we need it and it will be good for Jackson.  So off we went to pick it up.  After adjusting it to fit Jackson and loading it in the car the salesman handed me paperwork to sign and date.  When I went to write the date, I realized what day it was.  September 11^th.  My heart sank a little bit when I wrote the date.  Memories came flooding back and suddenly I felt great sadness for the families who lost a loved one that day.  I looked at Jackson and thought of all the children who lost a parent that day.  As a mother I thought of all the parents who lost a child.  I got in my car and took a few minutes to silently reflect on all of that.  Then I plugged in my iPod and found the song I needed to listen to.  It was a song by the Eagles titled “Hole in the World”.  “Hole in the World” was actually set to be recorded on September 11^th in their studio.  But before they got to the studio the events of 9/11 had begun.  The band waited a couple of days to record it and the song took on a whole new meaning.  The lyrics “There’s a hole in the world tonight.  There’s a cloud of fear and sorrow.”  pretty much sums up 9/11. 

I can’t quite put into words what that day was like for me, I don’t know that anyone can.  The life we knew as free Americans changed that day.  In a way it made us more human.  Up to that point I think we Americans kind of felt invincible.  Nothing could touch us.  We are born free to roam our vast, gorgeous country.  We have laws to obey but we aren’t terribly restricted and we have rights.  Our country is a powerful nation.  Then we were attacked.  Thousands of our own were senselessly murdered.  And it shook us.  Really, really shook us.  I remember watching the first tower fall.  I cry as I write this because I still feel the fear, shock, devastation, and disbelief I felt when that tower fell.  My only thought at the moment was “How many people were in that building?”  We couldn’t see the people in the building, but we watched them die.  Then the second tower fell.  It was almost too much.  Then the images of the Pentagon began to appear on television.  Reports of Flight 93 crashing in a field were broadcast.  What was happening?  All of the sudden we went from free Americans to trapped Americans under attack.  What was next?  My co-workers and I spent the day watching TV, we didn’t work, the phones at the office didn’t ring.  We were glued to the TV watching the most horrendous images we ever saw.  We spent the next week or so glued to the TV watching what was happening on the other side of our country, all the while feeling utterly helpless.  Kevin and I talked about driving out to New York to see what we could do to help the workers at the World Trade Center.  But I couldn’t get off work.  Now I wish I had gone.  My heart was back east, I wanted to be there to help in any way I could.

Slowly our country started to move on.  We were a prideful nation, our flags came out en mass.  Everywhere you went you saw the American flag.  I wish they were still out like that.  I wish our country could come together again like that.  America is definitely different than it was before 9/11.  Security is more of an issue.  We have all these new rules for flying and going over the border.  It’s an inconvenience for sure but if it helps stop another attack then I am for it.  Whether or not we are stronger, I don’t know.  In a way I think 9/11 divided us.  We began attacking our own based on their Muslim religion.  Many opposed our government’s new security measures and felt their rights were being violated.  Our soldiers were sent off to fight in a war many of us did not agree with.  Things changed in our country.  Some for the better, some for the worse.

A few years ago Kevin and I went back east to visit his family.  We went into New York City for a few days.  We visited Ground Zero.  At the time it was still a concrete hole.  I had never seen the towers, Kevin had.  I was in awe of the size of the site.  It made me very sad to be there, to imagine all those who had lost their life that day.  You could still see damage to buildings surrounding the site.  I remember thinking that if someone I knew had died that day having to visit this concrete hole would make my grief even worse.  It was barren, scarred and cold.  Since then the Memorial Park has been created and towers surrounding the site are being built.  I hope to someday go back to New York and visit this beautiful park.  I hope it brings some sense of peace to the families of the victims.  As for the rest of us I hope everyone takes a minute to silently reflect on all the lives that were lost that day, the families left behind, and the pride we should have in being Americans.

Back to School!

Jackson started school today subsequently ending the longest summer of my life.  I’ve never really been a religious person and since getting Jackson’s diagnosis I think it is fair to say that I am not a big fan of the “God” everyone prays to.  However, as I drove away after dropping Jackson off at school I screamed inside my head “Thank God!  Hallelujah!  Amen!”  I am so happy Jackson is back in school.  Spending the summer trying to entertain him every day was exhausting for me and I am sure for him.  We had some fun times and did a lot of things, but I am relieved he is finally back in school where he loves to be.  Although, I didn’t even make it home (15 minutes away) before I started missing him. 

Jackson seemed to recognize where he was this morning when we dropped him off.  He was happy and smiling when his teacher came over to him.  He was still smiling when we left him and in fact didn’t even seem to notice that Mama and Papa were leaving.  When I picked him up his teacher said he had a great day and she was amazed at all the progress he made over the summer.  She was especially impressed with his sitting up all by himself.  It is fun to hear comments like that from others on how he is progressing.  Sometimes when you are with your child every day you don’t always see the things that others see.  So here’s to another great school year for Jackson.  Yay for school! 

So finally a morning all to myself.  I know you are all wondering what I did with my free 2 hours.  Let me tell you, it was fun stuff.  Unloaded the dishwasher, reloaded the dishwasher, clean both the bathrooms, vacuumed, swept the floor, cleaned the cat box, and made about 6 phone calls.  Tedious work for some but for me it was bliss being alone in the house getting stuff done.  Again, yay for school!