Tuesday, April 26, 2011

Heaven?

I was enjoying the company of friends the other night and the conversation turned to heaven.  We all assumed there was one, so we were wondering what heaven would be like?  It didn't occur to me at the moment, but we all assumed we would be going there too. I hope we weren't presuming too much.

One particular friend has children with developmental issues, and his view of heaven was getting to meet his kids without their genetic flaws, and knowing them how they were supposed to be.  My first response was they are already perfect in God's eyes. I hate the "what if" or "only if" or "this is how it should be" thinking that always leads you down a dead end. I have not stopped thinking about this though.  They are perfect to God - but is it God's heaven or our own?  Wouldn't heaven be our own heaven?  Is heaven where we find happiness? Total bliss? Are we at our best physically?  Mentally? Do we get to meet our parents at the prime of their life? Our grandparents?  Can we meet Michelangelo or Abraham Lincoln? Do we play the piano perfectly? What about tennis? God never intended this for us - but wouldn't that be heaven?  What is heaven? Too many question marks.

One more. . . .

Do I really believe?

Ripples

“I believe that the very purpose of our life is to seek happiness. That is clear. Whether one believes in religion or not, whether one believes in this religion or that religion, we all are seeking something better in life. So, I think, the very motion of our life is towards happiness…” Dalai Lama

".. the very purpose of our life is to seek happiness.".  With all due respect, Mr. Dalai Lama, but I have to disagree with you.  If everyone on the planet acted in a way that constituted their own happiness, what an incredibly selfish world this would be (maybe that is the problem?). We may all be individuals, but we are not individual.  We live in a symbiotic society, and our actions and non-actions have ripples that reach out effecting others in both good and bad ways.  Consider a leaf floating on a river.  It has little control over where it goes except by what it encounters. Ripples can send it down one direction or another. Some have very little consequence yet others might be the difference between the waterfall or the reflecting pool. 

My FX daughter creates ripples just by being. Everyone she encounters is better off for knowing her (eventually).  Classmates are more tolerate and more aware of diversity, and perhaps less nervous around others who may be a little different. They will always remember her.  I know I still remember the special kids that went to my grade school.
  
Teachers have had to learn about fragile x and the teaching strategies that are best for her. They have gained patience and understanding (being hopeful here) and are becoming better at their jobs. 

Even the general public are not immune. I can not leave my house without meeting at least one person who knows my daughter. She will greet anyone, especially adults.  It is quite entertaining to watch as she goes to check out at a store " Hi!  How ya doin? Having a good day?"  After a moment or so to digest this 7 year old starting up a conversation (and doing her own transaction) they all respond with big smiles and a hearty "Hello, how are you?". Ripples in action. Most FX girls are rather shy, but her impulsiveness, or lack of inhibitions has trumped all that.

Finally, I come to me. I certainly have become a better parent and person.  I am a better communicator, fiercer advocate, more thorough planner, healthier cook, and better at asking for help (this list goes on).  I have also learned patience and tolerance and I have learned to place a much better value on life beyond my immediate family.  Part of the value I have learned is my effect on others, thus my ripple theory.  Where my daughter does this effortlessly, I have to wake up every morning and decide that I am going to create positive ripples today.  Some days it is hard, and on those days I pray to leave no ill effects. My family (husband especially) and close friends probably don't see the good ripples.  I use them selfishly to bolster me up so I can make my positive ripples on the world at large.  I want to improve the lives around me and as a teacher and an architect I get many opportunities.  I have to be aware that words I speak or write can be very powerful.  Even a simple smile, or withholding one, can have ripples. This blog is an example, and I hope the ripples are helpful. 

Mostly I want to have positive ripples for my daughter.  Despite her learning difficulties, she can be very intuitive and I hope she is picking up on the positive more than the negative.  May her leaf go toward the calm reflecting pool, and not the turgid waterfall.        

Friday, April 8, 2011

Decisions

We started another therapy last week.  Another therapy.  OT, PT, speech, social, behavior. The list is rather long for a 7 year old. I have high hopes for this one, as I did for all of them when we started.  We all make decisions that we hope are in the best interest of our kids, and they are difficult to make.  This post is geared toward parents who may be trying to make their own decisions, to review the different paths we have taken, and share our results.  

When we first started this process we thought we were dealing with ADHD, maybe a little sensory integration and perhaps ODD. If you read or hear current media reports, you would think that upon hearing ADHD - parents just give their kids stimulants, and the problem is solved. Let me assure you that the decision to give your kid drugs is never easy. We were not ready to go that road, so we researched and started with diet.

We had read the Fiengold diet, about color additives, sugar, etc. and we had been avoiding those since birth.  Then we read about the GFCF diet, gluten-free casein-free. The idea behind this diet was that the proteins were not being digested properly and getting into the bloodstream and straight to the brain acting like an opiate, causing irritability and aggressive behaviors.  Word was it could take 6 months to a year to really know, but we went for it. Fast forward 2 years.  We are largely gluten free in our house, mainly because it makes me feel better, and we do notice extra irritability with too much wheat in conjunction with other stressors.  We now bake with spelt - an ancient form of wheat with very weak gluten that breaks down very quickly. I make an awesome gluten free bread, which took me about a year to figure out.  The dairy did not seem to be a problem.  We did all the standard allergy tests, with nothing definitive.  We did an alternate delayed sensitivity allergy test - that measured IGG's in the blood.  This came back with extreme sensitivity to any kind of bean: soy, kidney, lima, etc, and peanuts.  I had been doing a lot of cooking with soy, so this was a little bit of a surprise.  Once we took out the beans, including peanuts, we did see results, but not what we thought.  The eczema on her legs and arms cleared up.  She used to scratch her arms and legs so badly they would bleed, and mosquito bites were awful.  Some decisions are easy - when she eats peanuts or soy, she starts scratching her skin.  This is the only concrete decision we have ever made. This test, and the celiac test say she should have no problem with wheat, but still we are not sure.  We are probably healthier for it.  My daughter's condition lends toward obesity, so avoiding carbs is a good thing. We avoid all fast food and read every label.

We also looked into alternative medicines.  We had a chiropractor adjust her spine and tell us she was allergic to metals.  We saw her one time. A natropath did muscle testing - telling us she was sensitive to wheat, sugar, dairy, and eggs (but not beans, prior to the IGG test), and directing us toward supplements (vitamins and minerals) and diet. We lasted 6 months with her, ending when she wanted to 'detox' our 6 year old. Finally we saw a homeopathic doctor who gave us an all-natural alternative to stimulants for treating ADD. I will admit this worked great for about 1 week, and then faded. This Dr. was the one to do the IGG test, so we got one benefit from it.

At this point we went the more traditional Dr. route.  The first psychologist we saw labeled her ADD, ODD, etc with out even meeting her, and recommended a Dr. to prescribe meds. So we went to a licensed psychiatrist and got our scrip for: Focalin, didn't work;  Adderal, didn't work; Intunive, put our kid to sleep during the day, would not sleep at night - end result: disastrous. He recommended Straterra next.  We went to the Thompson Center, U of Missouri, autism specialists instead.  Result: she did not have autism, but no advice for what we should do. Never in all this time did Fragile X ever come up. Last summer we finally went to a developmental pediatrician who ordered the chromosome analysis test. We finally got a true answer.  We also found 2 meds that worked for about 6 months. We then made the trek to Chicago that so many of us midwesterners do. We switched to Concerta, but no help. Back to the previous med at a higher dose.  This helped for about 4 months, but now we are trying to decide were to go next with meds.  Everything seems to be a guessing game, even for the Dr's.  How can you make clear decisions when there are so many unknowns?

About 6 months ago I read about the Brain Balance system,  discussing left and right brain functioning, and how to strengthen the weaker side.  I do have some faith in this, because it works for me, personally, but it is not enough for these kiddos.

Back to therapies.  Suffice it to say, we have tried many, starting with speech and behavior at 3 years old. Some were through school, some on our own, some covered by insurance, some not.  It is hard to say if they were worthwhile, because it is the only path we have taken. Speech therapy was a must, and will be a mainstay for a while.  Our latest is EAT.  Equine-Assisted therapy.  She was apprehensive at first; the horse was pretty big even though she chose the smallest one.  The look on her face upon mounting was fear quickly replaced by joy, and after the hour was over, I have to say that my daughter was calm.  This child is never calm.  Sleepy sometimes, but never calm.  The back and forth cadence of the horse, the total acceptance of animals, the kindness of the people (they were wonderful), the nice, but wet weather and finally being outdoors after a long winter.  Whatever it was, I am looking forward to more of it. Now if I could get insurance to foot the bill. Any advice?

Rubber, Lead or Crystal

Many years ago, when my life was getting stressful and I felt I had too many things to juggle, my sister taught me about rubber, lead and crystal balls.  Some things are like rubber balls. If you drop them, they bounce back and you can take care of them another time. Other things are lead.  When lead balls drop, they stay down. They were not necessary to begin with.  The last are crystal. These are the important items, ones you need to deal with. When crystal drops, it breaks.  The hard part is the recognition. 

Deal with the rubber tomorrow, don't worry about the lead, and take care of the crystal. 

This was good advice and I used it often. 

Now add the X factor to the equation.  The rubber balls are things I thought I had taken care of: IEP's, meds, or crazy behaviors.  They keep coming back again and again. The lead balls are just plain heavy, weighing on my heart and my mind. When dropped, they always land on my foot.  Ouch.  The crystal ball is the one that looks into the future.  My crystal ball is murky, hazy, unclear.  I have no idea what the future holds. 

Enter the positive spin:  Everytime a rubber ball comes back, I get to make it better.  I learn from it, grow from it, and hopefully get a better result. The lead balls are like lifting weights.  It makes you stronger in the end.  And finally crystal.  Just like a crystal chadelier or wine glass, it can be truly beautiful when hit just right by the light.     

Learn what I can, let it make me stronger, and find the beauty.

The sparkling brilliance of my daughter with a future too bright to see.

                                                                                                      photo credit

Saturday, April 2, 2011

No Shame In Tears

Last week I was reading (Time, I think) that crying is the bodies natural reset button.  I have been doing a lot of 'resetting' over the last 6 months: any place, any time, accept home.  My daughter is incredibly empathic and she falls apart if she sees me cry. Without a single word or look her radar picks up on my emotions, "Mom, why are you sad?". I have no way to explain it to a 7 year old.  I am her rock.  I have to be.  So I 'reset' in my car or at work in my office in those spare moments when I am alone. Then I get embarrassed and maybe a little ashamed, trying to fix my makeup before someone walks in.  Quite frankly, I am tired of the tears, but I know I can't stop it.  So here is my plan: get some waterproof mascara and say "bring it on".  I have no shame in my tears and I will explain to my daughter that I cry because I love.

The diagnosis came in October and it was rough, but it is not like we didn't know something was wrong.  Partly I was relieved to finally know what the real deal was - and that there was a physical reason behind everything that was going on. We attended our first symposium on October 30, and it was like going down a checklist of all the issues we were having. Here was the answer, and here also was the beginning of more questions, I dove right in and read every book I could find in the library, and scoured the internet for information.  I read the factual, scientific reports, and I read the first hand accounts of other families dealing with Fragile X. I couldn't stop the emotions: worry, fear, anger, jealousy,etc. I still feel overwhelmed some days and I am still working on acceptance. Like the tide, it ebbs and flows with good days and bad, but I am her rock, and I will not erode.