Let's Stop Saying the "R" Word

Beds, seizures and Target display disasters

Jackson is heading into day 27 of being seizure free!  The Sabril is working and our little boy is changing.  Friday we went to see his neurologist and he kept saying “Jackson looks so good!”  It’s true, he does.  There is definitely progress happening in his brain and the kid is finally showing us who he is without the seizures.  He is more alert, in good spirits, curious, and reaching out for everything.  Which brings me to the Target display disaster.

 When Jackson was having seizures, it seems to me now, that he was just pretty numbed up.  He wasn’t very excitable and didn’t show a lot of interest in things.  That is starting to change (thank goodness), but it has been his way of life.  Before when we were in any store he would just sit in his stroller kind of looking around.  Yesterday we went to Target and before I knew it Jackson was leaving a trail of destruction through the shoe aisle.  I stopped to try and find him some sandals for summer and as I was looking at shoes, Jackson was grabbing pair after pair and throwing them on the floor.  By the time I turned around there was quite a collection.  At first I was like “oh crap!” and I started putting the shoes back.  But then I had one of those Oprah “Aha” moments.  Aha! My son is grabbing for shoes and making a mess!  I was suddenly so happy I got tears in my eyes.  Jackson was “that kid”, the one making a mess in Target.  I couldn’t stop smiling and laughing.  And you know what?  I just left those shoes on the floor.  It was like a shrine to me and I wasn’t going to destroy his work.  As we made our way through the store, clothes were pulled off hangers, toys were pulled off shelves and I just kept smiling.  I want to take Jackson to the store every day now and seeing what he can destroy.  I feel an overwhelming sense of joy to be the parent of “that kid”. 

The fact that he is seizure free is such a relief.  But as I have mentioned before one of the side effects of this medication is permanent peripheral vision loss so his eyesight has to be examined every 3 months.  In 6 months if the medicine is still working we will have to go back to Seattle Children’s Hospital for an in-depth vision exam.  In 2 months we will have another EEG done to see what brain wave activity is happening.  At this point Kevin and I are both feeling that the vision loss may be worth the freedom from seizures.  It’s a tough decision, but Jackson making progress, learning, and developing cognitive skills is vital to his being able to live a better life.  The progress he has made this last month has just been awesome.  He is standing up and taking steps (with support), he is starting to show interest in toys, he is more interactive with people, and he has been a happy boy.  I feel like if he can make this much progress in one month of being seizure free, then great strides may be in his future.  We just have to stay on this path for a while and see what the medicine will bring us. 

Last weekend Kevin, Jackson and I drove to a little town called Royal City over by the Columbia River.  Our mission was to deliver Jackson’s brand new twin mattress to a man named Dwight.  A man we had never met and who had never met us.  Through a friend of ours, and her dad Gordon, Dwight heard about our plight for a safe bed for Jackson.  And just like that a stranger offered to build Jackson a bed.  Dwight is a retired school teacher.  He taught Shop.  Dwight and Gordon are going to work on the bed together.  It’s pretty exciting and touching.  I’m still not sure how you thank someone for something like that.  I do have to say that before the bed making offer came from Dwight and Gordon another friend of ours offered to buy the SleepSafe bed for Jackson.  Just FYI, those beds run about $5000.  I was overwhelmingly touched by that too.  But there was no way I was going to let that friend spend their hard earned money on us.  Both of the offers were excellent reminders of how well I have chosen friends over the years. 

Although Dwight and Gordon are working on Jackson’s bed, don’t think that I have given up the fight with Molina Healthcare!  It’s not so much about getting the bed now as it is the principle of the fight.  Molina first denied the bed based on the fact that we hadn’t proven the bed was the most costly or effective.  Then when we did prove it, they came back and said “Oops, what we meant to say was we just don’t buy beds.”  I don’t like my little boy getting jerked around by big, rich insurance companies.  So I am going to ask for an Administrative Hearing.  The Justice Project (attorneys) find Jackson’s case intriguing and have agreed to take a look at all the documentation and see if we have a case.  I’m still going to fight Molina until the end of the road, but Jackson is going to have a nice, safe bed soon and that is all that matters. 

Sadness

On Friday my friend Anne lost her son Matthew.  He was 29.  He was disabled.  When I talked to Anne this morning I couldn’t get over how brave she is, and has been for the last 29 years.  When Matthew was young Anne understood that his medical needs and care were too much for her and her family.  She made what I think is the bravest, and no doubt scariest, decision a mother would have to make.  Matthew went to live in a care facility.  Back then moms didn’t have the kind of resources and help we do today.  I have no doubt if Jackson was born 29 years ago we would have put him in a care facility also.  The therapies, doctors, nurses, rehabilitation facilities, State and Federal government, and health care companies all make it possible today for our children to stay at home for us to raise.  But it isn’t easy on some of these mothers.  I am pretty lucky in that Jackson doesn’t have feeding or breathing tubes, he doesn’t have a colostomy bag, he doesn’t have paralysis, and he isn’t in and out of the hospital every time he gets so much as a runny nose.  A lot of disabled children have these needs and their mothers and fathers are just barely hanging in there trying to care for them.  That is also why the divorce rate of special needs parents is outstandingly high.  Raising these special children isn’t easy and sometimes parents discover they just can’t do it.  Frankly, those parents are my heroes.  They are putting aside their own wants and needs and doing what is best for their child.  They are making the ultimate sacrifice.  Just like Anne did.  Regardless of the fact that Matthew lived in a care facility, he was loved.  He was Anne’s son and she loved him just as we all love our children.  To have a disabled child brings so much grief into your life.  A grief you kind of just end up living with.  But you also end up living with a different view of the world.  A world where little things don’t matter so much and disabled children aren’t “freaks”, they are the best teachers you’ll ever have.  They teach us that love is truly and constantly unconditional, that life can bring you sadness one minute and inexplicable joy the next, that a smile is all it takes to burst your heart open, and that patience is not just a virtue, it is a way of life.  Matthew taught Anne, and Jackson is teaching me, that being a special needs mom is the most extraordinary experience a mother can have. 

Anne’s little boy is now free from his pain and she no longer has to watch him suffer.  For that I am thankful for both of them.  But as I write this I am crying.  Just because Matthew was disabled doesn’t mean his life mattered less.  Anne isn’t grieving for her disabled son, she is grieving for her son.   Matthew’s life mattered just as much as anyone’s.  Let that be a lesson to all of us. 

Quotes

One joy scatters a hundred griefs.  ~ Chinese Proverb

I have a little notebook of quotes.  When I hear a good quote, I write it in the book.  The other day I was reading some of them and came across the one above.  It made me think of Jackson.

Some days I feel like all I do is write letters, make phone calls, and shuttle Jackson around town to school and appointments.  By the time I crawl into bed for the night I feel like a whole day has been lost.  It makes me sad sometimes.  Where are all those days filled with trips to the park, Playdoh, peek-a-boo, and coloring?  Jackson’s 3, we should be doing all those things, giggling along the way.  Instead I’m fighting insurance companies and Spokane School District, making appointments, and trying to keep my head above water.  And there’s the underlying grief that occasionally surfaces about having a different child.  But then, just like the quote, Jackson will do something.  He’ll stick his finger up my nose, bust into hysterical laughter for no apparent reason, look at me and smile, pretend he’s playing with my hand while slyly moving my finger into his mouth for a bite, and I will laugh.  I’ll feel such love and happiness for my little boy.  True joy.  The griefs will scatter and I forget all about them.  The only thing that is important is Jackson.  As it should be. 

Happy Report

It seems like most of my posts lately have been kind of downers, or at least that is how I feel when I write them.  I think it is high time for a happy report!

Jackson has now been in preschool for two weeks.  All my fears and concerns flew out the window the 4^th day of school when I picked him up and his teacher gave me two thumbs up.  He is adjusting beautifully and his teacher and aides are working hard to find out the stuff he likes and doesn’t like.  I think he actually likes school.  When we get there and I open the car door to take him out, he can hear the sounds of kids and he starts smiling and giggling and getting excited.  He is happy when I pick him up too.  It’s such a huge relief to know that he is happy and adjusting and not totally miserable.  My favorite part?  Friday when he got home from school I was unpacking his backpack and came across a paper bag with the words “To Mom” on it.  I opened it up and there were two craft/coloring projects for me for Mother’s Day.  One was Jackson’s handprint.  It made me burst into tears.  I told Kevin I want to be buried with them.  I know Mother’s all over the world are getting crafty stuff from their kids and it isn’t a big deal.  But honestly, I wondered if I ever would.  In the back of my mind somewhere I think I thought Jackson would never be able to do stuff like that.  I love, love, love it when I’m wrong!

The transition has also been good for me.  Having a couple of hours to myself every morning has really been great.  I can get the grocery shopping done without fearing a meltdown in aisle 5.  I can sit on the couch and catch up on my recorded Ellen shows with the volume at a normal level.  I can make phone calls and not have to yell into the phone over Jackson’s “talking”.  I can leisurely pick out a book at the library instead of grabbing whatever is closest to me because Jackson is making too much noise in the quiet building.  The best part is I get everything done and so when Jackson comes home I can just hang out with him and not have my “To Do” list hanging over my head.  I kind of like spending my afternoons rolling around on the floor and snuggling with my kid!

The other great news is that Jackson has been seizure free for a couple of weeks.  We started him on the new medication, Sabril, and within 5 days the seizures stopped.  I am so happy to not have to watch him seize up all the time.  I also think that is why he is doing so well in school.  He’s not irritated and worn out from the seizures.  He is able to focus and learn.  It’s great in so many ways, but the effects of this medication on his vision scares me every day.  Sabril can cause permanent peripheral vision loss.  We will have to make a decision in a couple of months about whether to stop the medicine and risk the seizures returning or keep giving him the medicine and risk the vision loss.  That decision is looming in my future and I am dreading it.  For now I am just going to enjoy my little seizure free boy and watch him learn some new stuff at school.

Victories & Defeats

There isn’t much I can do for my beautiful boy.  I can’t go back in time and undo the “fluke” that caused his brain damage.  I can’t get him a new brain that works right.  Worst of all I can’t stop the seizures that wrack his little body.  As a parent that is the most difficult thing to accept, that you can’t do anything.  But recently I have discovered that the one big thing I can do for Jackson is fight.  And the last couple of weeks that is exactly what I have done. 

I fought to get him ESY (extended school year services) in his IEP at school.  Basically I wanted him to get summer school because he needs all the help he can get.  They tried to give me the song and dance about how they had to prove regression before they could approve ESY services and since he was a new student they couldn’t prove it, so no ESY for Jackson.  Unfortunately for them I’m a mom who is not only a teacher (who has worked with IEP’s before) but someone who has a legal background and has spent the last 3 months educating herself about IEP and federal laws.  The Friday before he was to start school was the deadline to sign the IEP and I wasn’t going to sign until they gave me ESY for Jackson.  During our morning conversation that Friday I made it clear to the social worker that I knew regression wasn’t the only factor to get ESY.  There are about 8 factors the federal government indicates as qualifiers for children for ESY.  Jackson falls under more than the regression.  The fact that Jackson has multiple disabilities and epilepsy qualifies him.  I mentioned a few other laws I felt Spokane Public Schools was breaking in regards to special education and she surprisingly agreed.  She said she was getting pressure from above and admitted it was political.  I think she was actually happy that I was educated and not going to take no for an answer.  She told me she was going to let the chain of command know that Jackson’s mom was knowledgeable and educated about the special education system (although I feel like a total newbie).  By noon I had an answer.  Jackson was getting ESY!  Victory for Jackson!

Then defeat.  I got word today that despite the week I spent writing my 5 page appeal letter, gathering 4 letters from Jackson’s doctors and therapist, and doing hours of research, Molina was denying my appeal for Jackson’s bed.  I am still somewhere between a major crying fit and punching a hole in the wall.  Molina claims it is not medically necessary that Jackson has a bed.  The “medical director” told Jackson’s physical therapist today that no matter how many times we appealed the denial, they would just continue to deny us.  I just can’t fathom this.  Where is Jackson supposed to sleep where he is safe?  I feel lost.  I can’t tell you how devastating it is to not be able to buy your child something as simple as a bed. 

I’ve been knocked down today but hopefully by the time I wake up in the morning I will be able to get back up.  A good night sleep is often what I need to wake up pissed off and ready to fight.  No matter how exhausting the fighting gets, I know I have to power on.  Somehow I will get you a bed Jackson.  I don't know how or when right now, but you will have a bed you deserve someday.