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.        

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

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.

Ode to the American Farmer

I am stepping aside from the Fragile x world for this post.  It is in honor of my father who celebrated his birthday a few days ago. He is a retired farmer, the true personification of 'salt of the earth'.  He wrestled a living from the earth, enough for a family of 12.  He remembers life before electricity and plowing a field with horses.  He attended a one room school house until the 8th grade, and not beyond.  He knows what it is like to rely on neighbors to sustain your existance.

Today he has ears that can't hear after years of working around old tractors, skin like an old baseball mitt with a permanent farmer's tan, and a determination to keep going no matter what, not retirement, cancer, or bad hips can slow him down.

I was so fortunate to grow up on a farm, a lifestyle that is disappearing. I remember a dinner table covered with food gathered within 150 feet of our front door and recycling everything before it was 'fashionable'. Dad was always a bike ride away in the fields if he wasn't in the barn or the sheds.  I grew up with 2 stay at home hard working parents. Our farm was a perpetual play extravaganza. There were 10 of us kids and any number of dogs, cats, and other animals, not to mention neighbors and cousins. We all survived with arms and legs intact, although a few got broken along the way. We may have been lacking in material things, but definetely not in imagination, or morals, values and work ethic.  

I have so many vivid images of my father: the day our barn burned down when I was 3 or 4,  showing me how to use the table saw so I could make my own Barbie furniture, teaching me to drive the old station wagon. The strongest one occured almost 7 years ago.  My father had taken up the harmonica and he played it everywhere, anytime. The sound in the background was becoming quite familiar, and we thought little of it.  I am standing in a crowded room, hundreds of people actually, most of them friends and family, a few strangers, and I hear it.  My Mom's favorite song, the one he played for her every night before bed. For a while, I thought nothing of it - just background noise, but then I saw him in the corner of my eye. He was leaning over my Mom's casket, giving her one last seranade. I wish I was a better writer so I could give you an idea of what this moment was. The eventual, absolute stillness of the room, the streams of tears on all the faces.  My Mom and Dad had been marreid for almost 50 years, and he was saying his final fairwell.  He was her caregiver for the 15 years she suffered from Parkinson's, and he was with her when she died. All of us got a little glimpse of what their life was like, a glimpse of his tenderness and devotion. My Dad was always a caregiver and still is.  He cares for his family, he cares for the land and the animals on it and he cares for God.  Thank you for all of this.

I love you Dad.

In The Beginning . . .

I was one of those mothers, you know the type.  I worried about everything I ate, got my exercise and sleep, took my vitamins, gained just the right amount of weight, read all the books, and dreamed about my child to come. We couldn't wait to meet her, and she kept us waiting. Labor was induced 8 days after my due date, and after an uncomplicated delivery, she came out topping the scales at almost 9 1/2 pounds. She was truly beautiful, but all was not rosy. She had a small hole in her heart that quickly closed up.  The doctors let us take her home after 2 days and I still remember the shock and feeling of being in way over our heads. A little jaundice, a little (or a lot) of adjustment and we finally got the hang of it.  Things seemed pretty normal.  We continued on our over protective ways and banned artificial colors and flavoring, high fructose corn syrup and every other thing you would hear about. Organic and hormone free were our buzz words. All babyfood was homemade and the breast milk kept flowing for 18 months.  The house was babyproofed and we continued to read all the books, especially the ones on sleep.  To this day, I have still not caught up.

At 8 months, she said her first word, "Hi", which she said to everybody (human or not) within a 10 foot radius.  She was 14 months when she started walking. She was sensitive to sounds, would not cuddle or rock, never bothered to crawl, hated to sleep and loved to eat.  By the age of 2 she was having a lot of speech issues.  We assumed this was her hearing and the frequent number of ear infections. Tubes helped with the infections, but not the speech.  This is where it began, our entry into the public school system, IEP's and the 'specialists'.

Little did we know it would take 5 more years to get an actual diagnosis.

Fragile X, My Definition

There are many articles and medical journals that can provide a precise definition. A quick google search is all you need. Here is my first hand, non medical definition that hits the highlights.


As little babies, all of us have hundreds of thousands of little brain synapses reaching out to make connections and grow strong. Along the lines of our development, a certain protein called FMR1 steps into the picture enabling some connections and disabling others. This protein does not exist in the bodies of Fragile X people.  Their brains take in thousands of pieces of information, more than you or I can ever imagine, but there is no where for this information to go.  Only a few tenuous pathways exist to give it a permanent residence in their brains.  Knowledge gained is hard fought, but permanent.


Physical development is fairly normal. A few differences may exist including large heads, soft connective tissue (which creates soft skin and hyper-extendable joints), large ears and elongated chins, but this is not evident in all cases.  It is the mental development that takes the punch. Delays in learning, speech, motor skills, attention, behavior and social interactions are what we see across the board. There are varying degrees of each in all affected people.


My daughter is in a constant state of hyper awareness.  You and I filter out tremendous amounts of information everyday.  What we don't filter out gets organized and stored in our minds with the full confidence that we will be able to retrieve it when we need it. This doesn't happen for my daughter.  All of this information piles into her brain with no where to go, and no way for her to hold onto it. Imagine a perpetual traffic jam on the information highway in your brain. Complicate that by not knowing where the offramps are - or that they even lead anywhere. It is easy to see why my daughter can become overwhelmed so easily, why she is so sensitive to sights and sounds, why she can not stay focused on any one item, why she exhibits severe mood swings and behavior outbursts, why she thrives on and requires routines and perseverates on the unknown. We can also see why she so desperately reaches out for a social connection, a life line, even if she doesn't know what to do with it when she gets it. People call it road rage when it happens on the highway.  People call it bad parenting when it happens with our kids.


XQ27.1-28.   Letters and numbers that seem so random, yet are so powerful. These are the portions of the X chromosome that are missing from my daughters DNA. Section 27.1 through 28 of the Q arm of the X chromosome. 27.3 is the specific portion that creates FMR1.  For the typical person with Fragile X,  there are a significant number of repeats of 27.3, rendering it unable to produce this protein.  In my daughter's case, 27.3 is missing: same result though, no protein.


One in every 800 men and almost 260 women walk around as carriers of this syndrome.  Women pass the full mutation on to their children, but they receive it from either parent. Boys have more extreme cases, as their chromosomal makeup consists of 1 X from their mother and 1 Y from their father. Girls receive 2 X chromosomes, allowing one to help make up for the deficiency in the other.   Because it is genetic, it can reappear often in the family tree. My daughter's condition is not inherited and was a spontaneous mutation of her chromosome. This does not exist in my family tree.


A few random thoughts:
  -   It is quite amazing actually that more bits and pieces are not left off of people's genetic makeups.  Maybe they are and have been for generations.  We just see them as other things.
  -   Imagine for a moment if those hundreds of thousands of connections where allowed to develop?  I have heard that the average human uses 10 % of their brain.  Could evolution be directing us to realize more of that capacity?  Could these kids be the forerunners of that evolution?