I have had a lot of thoughts running around in my head lately, so I thought I would just jot them down.
Contentment:
Are we geared to be content? If we were all satisfied with our stations in life, would we ever strive for more? Wouldn't society just stagnate? Would we have new inventions, new experiences, new buildings? Perhaps not being content is what led to our development as a human race. I have a desire to simply be content, but maybe that is against human nature, and something I should not even long for.
Moms:
I have had occasion to meet a lot of parents of these special kids, and I have discovered that these moms are pretty amazing. They are forceful, persistent, organized, and patient. They would make amazing employees, or business owners for that matter, if they weren't so darn busy taking care of their kids.
Education: (Venting alert)
Why are all of the public schools geared toward one type of learner, the left brained learner? There are 3 public schools all in about the same distance from my house. Why can't one of them have a right brained curriculum. I think we can tell at kindergarten if our kids are left or right brain, and fragile x kids tend to be right brained. Look at all the different kids who end up in trade schools in high school after struggling for years with the existing curriculum. These are really smart kids, but after years of sub-performance, their confidence is shot, and they end up as 'behavior' problems. This could all be averted at an early age by sending them to the right school. There is a huge section of kids with potential that is not being tapped. The curricula are out there, my daughter went to a Reggio based preschool which actually worked well for the way her brain is wired.
I am locked in to attending a public school to achieve the special services my daughter needs, but it kills me to pay my taxes to a public school system that is failing so many of these kids.
Report cards:
What a waste of paper. All they tell me is that my daughter is below grade level. I already know this. It would be helpful if they told me what she can do - what level is she at now? Same for IEP's. What does 'making progress' actually mean? And why is it relevant that she can regurgitate x amount of words in so many minutes? What does that signify?
Respite and Guilt:
I spend so much of my time thinking about, researching, worrying, sharing stories with others and talking about Fragile X. Sometimes I need to get away from that world, and hang out with strangers who know nothing about it, or declare a 'no discussion' zone. The problem is that I feel guilty when I do that, like I am not doing everything I can for my kid. I also feel guilty leaving my daughter with babysitters, although she doesn't mind. I do not have the luxury of having close family members that can watch my child.
As parents we are already strapped down with so much guilt about how our defective genes caused this burden for our kids. It is a hard emotion to overcome. I do know, however that the respite helps me to recharge and I need that to be a better, and more positive, person for my kid to be around.
Could be worse:
Even though my daughter has fragile X, I am fortunate that she is high functioning for this syndrome. There are others who have it so much worse. I was sitting around some DS parents at a therapy session, and they were talking about the kids who are much worse than their own. The funny thing is, that almost everyone I meet says this. There is always someone who has it worse. Who is the person at the bottom of this - who has it the worst? And does that person think they have it the worst or do they think that is someone else. I guess it is a matter of degrees and what you hold as important. One of these boys can barely speak, and my daughter never shuts up, but this boy can read at a much higher level than my kid.
My sister has 2 kids who have kidney conditions that required transplants, years of dialysis, many hospital stays and near death occurrences. While sitting in a waiting room with other parents, she was always the one the other parents looked too, thankful their kids weren't like that. She certainly didn't feel like she had it the worst. Her kids were smart. They had friends, and when they were well, a fairly high quality of life. They are both in college now, leading independent lives. It comes back to your own values. My niece and nephew have a medical condition that can take away their life. My daughter is the healthiest kid I know.
Wednesday, October 26, 2011
Wednesday, October 12, 2011
"My Fragile X Made Me Do It!"
These are the words that came from my daughter's mouth this summer when she got in trouble at camp. After setting her straight about expected behaviors, no excuses, this really made me pause. Is my daughter getting special treatment because of this one little chromosome. Am I treating her differently than an uneffected child because of things I think she can or can not do? How are my expectations affecting her life?
I already know that it is having an impact at school. Last semester, I received a call from her teacher about an altercation with a fellow student. This other student was suspended from school, but my daughter was forgivien because "she can not control her behavior, and the other child can". Part of me is glad that she did not receive this punishment, but I have to wonder if it is really true. I know for a fact that I can not play tennis. I have no depth perception, so I cannot tell where the ball is in relation to my body. I also know for a fact that I can not give my daughter multi-step instructions. She would never be able to remember all of them, and would not be able to abide. There are limits. The hard part is recognizing where they exist.
I heard a tale this summer at a symposium that I attended. One of the speakers, a mother with 2 effected boys, was asked a question about potty training. The first one, she said, was very normal. He was trained by 2 1/2 but that was before we knew about Fragile X. The other boy, who was diagnosed as an infant, took 7 years. Clearly, an expectation affected the outcome. I hear girls with fragile X are poor at math. I happen to be very good at math. If I make an assumption that my daughter will be bad at math, am I dooming her to a foregone conclusion. I am certainly frustrated by her difficulties, because it is something that I found so easy, but just because she finds it difficult, does not mean that it will not fall into place. Do I keep pushing her, and patiently spend 40 minutes with her to complete a task that should take 10? When do I push, and when do I retreat and formulate another plan? Reading and writing are another issue with her. We are now writing letters in rice, and building them with play-doh, anything to add a tactile element to the process, but I can't say that it is working. She has sensitivity issues and can't stay with it for long - or does she? Is this another convenient excuse to get out of doing her work? She has never liked play-doh. But she also has a very short attention span and never stays with any project for long.
My daughter is a master at manipulation and negotiation. She has all kinds of tricks up her sleeve to help hide her shortcomings. She is very good at getting people to do things for her and she does it with sweetness and charm, which may prove useful in future life, but I don't feel like it is something I can support. She is well under way into the new school year, and she is really testing all her teachers. Things are harder, and she is feeling overwhlemed, so she is pulling out all of the stops to avoid doing her work. I am getting a lot of calls about arguements and refusals. I know this is her way to gain control of the situation, and to avoid demonstrating her inadequacies. She is 8 years old, and self realization and esteem are becoming issues this year.
She is always changing the subject. Is this a part of fragile X because she can not remember the current conversation, or is she simply diverting to avoid something she doesn't want? When she was 4 years old, her pre school teacher was trying to get her under control. In the middle of her tantrum, she blurted out - How is your baby boy? Considering that his son was in the hospital, this remark was enough to send him off course. Diversion and avoidance were successful. Was this a purposseful action on her part, or did the idea suddenly pop into her head, and she impulsively blurted it out? She was only 4.
She knows exactly how to push buttons, and mine more than anybody else. I have to take a hard look at myself, and really figure out what type of ground work I am laying down here. I have to admit that giving in sometimes certainly makes my life easier. I bet I am not the only one who has tied a shoe to avoid being late. I know this is an issue all parents face. I just wish I knew more about what was going on in her head, so that I know if something is futile, like me playing tennis, or just simply difficult. How long do I pound my head against the wall?
On a good note - she has never repeated this excuse. If this truly is manipulation, then perhaps my daughter is a LOT smarter than even I give her credit for. People say she misses social cues by not reading faces. She is reading something, because she is almost telepathic when it comes to reading emotions. Is there an oscar catagory for this because I am getting really good at acting like I have none.
I already know that it is having an impact at school. Last semester, I received a call from her teacher about an altercation with a fellow student. This other student was suspended from school, but my daughter was forgivien because "she can not control her behavior, and the other child can". Part of me is glad that she did not receive this punishment, but I have to wonder if it is really true. I know for a fact that I can not play tennis. I have no depth perception, so I cannot tell where the ball is in relation to my body. I also know for a fact that I can not give my daughter multi-step instructions. She would never be able to remember all of them, and would not be able to abide. There are limits. The hard part is recognizing where they exist.
I heard a tale this summer at a symposium that I attended. One of the speakers, a mother with 2 effected boys, was asked a question about potty training. The first one, she said, was very normal. He was trained by 2 1/2 but that was before we knew about Fragile X. The other boy, who was diagnosed as an infant, took 7 years. Clearly, an expectation affected the outcome. I hear girls with fragile X are poor at math. I happen to be very good at math. If I make an assumption that my daughter will be bad at math, am I dooming her to a foregone conclusion. I am certainly frustrated by her difficulties, because it is something that I found so easy, but just because she finds it difficult, does not mean that it will not fall into place. Do I keep pushing her, and patiently spend 40 minutes with her to complete a task that should take 10? When do I push, and when do I retreat and formulate another plan? Reading and writing are another issue with her. We are now writing letters in rice, and building them with play-doh, anything to add a tactile element to the process, but I can't say that it is working. She has sensitivity issues and can't stay with it for long - or does she? Is this another convenient excuse to get out of doing her work? She has never liked play-doh. But she also has a very short attention span and never stays with any project for long.
My daughter is a master at manipulation and negotiation. She has all kinds of tricks up her sleeve to help hide her shortcomings. She is very good at getting people to do things for her and she does it with sweetness and charm, which may prove useful in future life, but I don't feel like it is something I can support. She is well under way into the new school year, and she is really testing all her teachers. Things are harder, and she is feeling overwhlemed, so she is pulling out all of the stops to avoid doing her work. I am getting a lot of calls about arguements and refusals. I know this is her way to gain control of the situation, and to avoid demonstrating her inadequacies. She is 8 years old, and self realization and esteem are becoming issues this year.
She is always changing the subject. Is this a part of fragile X because she can not remember the current conversation, or is she simply diverting to avoid something she doesn't want? When she was 4 years old, her pre school teacher was trying to get her under control. In the middle of her tantrum, she blurted out - How is your baby boy? Considering that his son was in the hospital, this remark was enough to send him off course. Diversion and avoidance were successful. Was this a purposseful action on her part, or did the idea suddenly pop into her head, and she impulsively blurted it out? She was only 4.
She knows exactly how to push buttons, and mine more than anybody else. I have to take a hard look at myself, and really figure out what type of ground work I am laying down here. I have to admit that giving in sometimes certainly makes my life easier. I bet I am not the only one who has tied a shoe to avoid being late. I know this is an issue all parents face. I just wish I knew more about what was going on in her head, so that I know if something is futile, like me playing tennis, or just simply difficult. How long do I pound my head against the wall?
On a good note - she has never repeated this excuse. If this truly is manipulation, then perhaps my daughter is a LOT smarter than even I give her credit for. People say she misses social cues by not reading faces. She is reading something, because she is almost telepathic when it comes to reading emotions. Is there an oscar catagory for this because I am getting really good at acting like I have none.
Monday, October 10, 2011
The Key To Happiness Is....
I don't have the first clue. I just thought I needed a good tag line to get people to come back to my blog. I have been away since the spring. I would like to say that I had a nice summer hiatus, but to be honest my summer was not good.
People always ask "Enjoying your summer? It must be so nice to get summers off." Well, as a teacher, you don't really get them off, you just have to spend all summer doing the crappy stuff. Add to that the high heat and the low budget, there wasn't a whole lot to do.
"It must be great to spend all that time with your daughter." Yes, I had the whole summer to hang out with my kiddo, which was ok some of the time, and extremely challanging the rest of the time. This was the first summer after our diagnosis, and it was a chance for me to get up close and personal on a 24/7 basis with all that Fragile X means. During the school year, she went off to school and I went off to work, and my mind was occupied by other things. Summer was a full on reality check. Last summer she was in summer school, but that was cut this year due to the state budget. I am not cut out to be a stay at home mom - and special snaps to all those ladies who are. It is HARD. The summer finally started to get better in August, and I think that is when I figured out that I had to stop fighting my situation, and just accept it. I thought I already had, but with all the close contact, loosing my patience everyday, facing new realities and shortcomings everyday, I guess I didn't realize.
Acceptance. That is a tough thing to accomplish. While it may not be the key to happiness, I would have to say it is the key to contentment. When I stopped being jealous that my friends could stay out late, or go to movies, things got better. When I stopped caring that invitations for play dates and birthday parties did not come our way, things got to be better. When I just let me daughter be, and stopped trying to fix everything, things got better.
We also spent some time adjusting medicines to see if we could find something that might be a little more productive. We discovered that higher doses of stimulants made her so anxious she became paranoid, and that withdrawel from Abilify is very nasty, and we could not last more than 2 days before we went back on a minimum maintenance dose. With the onset of the new school year, we decieed to move forward with an anti-anxiety drug, but I have to admit, we are not seeing benefits yet, just an increase in hyperactivity. Exactly what we do not need. This new drug seems to have sent us on a vicious cycle. Higher stimulants make her anxious, requiring anti-anxiety meds. These meds increase her hyperactivity and lack of focus, requiring higher stimulant doses. This is a completely unsustainable cycle. We will try it out for a few more weeks, as they say it takes 4-6 weeks to see full efficiacy, but we may be back to square one. It is so frustrating when you realize a medicine you had hopes on just doesn't work. Back to acceptance again. Stop trying to fix it.
There is one more event that happened this summer, and that is the introduction of the IPad into our life (and Netflix). I think that every person with disabilities should be issued one of these. Mine is merely on loan for the time being, but I do not think I could live without one now. There are so many apps that can be beneficial. If nothing else, Steve Jobs legacy will be helping out these kids in ways he never even imagined. I saw it give a voice to another little girl who couldn't use her own. This is not a commercial for apple, but this one device, that can keep up with the 5 minute attention spans, and can sneak in some reading lessons and counting lessons, etc. brought a little sanity in my life. Dare I say ... the key to happiness is an IPad?
People always ask "Enjoying your summer? It must be so nice to get summers off." Well, as a teacher, you don't really get them off, you just have to spend all summer doing the crappy stuff. Add to that the high heat and the low budget, there wasn't a whole lot to do.
"It must be great to spend all that time with your daughter." Yes, I had the whole summer to hang out with my kiddo, which was ok some of the time, and extremely challanging the rest of the time. This was the first summer after our diagnosis, and it was a chance for me to get up close and personal on a 24/7 basis with all that Fragile X means. During the school year, she went off to school and I went off to work, and my mind was occupied by other things. Summer was a full on reality check. Last summer she was in summer school, but that was cut this year due to the state budget. I am not cut out to be a stay at home mom - and special snaps to all those ladies who are. It is HARD. The summer finally started to get better in August, and I think that is when I figured out that I had to stop fighting my situation, and just accept it. I thought I already had, but with all the close contact, loosing my patience everyday, facing new realities and shortcomings everyday, I guess I didn't realize.
Acceptance. That is a tough thing to accomplish. While it may not be the key to happiness, I would have to say it is the key to contentment. When I stopped being jealous that my friends could stay out late, or go to movies, things got better. When I stopped caring that invitations for play dates and birthday parties did not come our way, things got to be better. When I just let me daughter be, and stopped trying to fix everything, things got better.
We also spent some time adjusting medicines to see if we could find something that might be a little more productive. We discovered that higher doses of stimulants made her so anxious she became paranoid, and that withdrawel from Abilify is very nasty, and we could not last more than 2 days before we went back on a minimum maintenance dose. With the onset of the new school year, we decieed to move forward with an anti-anxiety drug, but I have to admit, we are not seeing benefits yet, just an increase in hyperactivity. Exactly what we do not need. This new drug seems to have sent us on a vicious cycle. Higher stimulants make her anxious, requiring anti-anxiety meds. These meds increase her hyperactivity and lack of focus, requiring higher stimulant doses. This is a completely unsustainable cycle. We will try it out for a few more weeks, as they say it takes 4-6 weeks to see full efficiacy, but we may be back to square one. It is so frustrating when you realize a medicine you had hopes on just doesn't work. Back to acceptance again. Stop trying to fix it.
There is one more event that happened this summer, and that is the introduction of the IPad into our life (and Netflix). I think that every person with disabilities should be issued one of these. Mine is merely on loan for the time being, but I do not think I could live without one now. There are so many apps that can be beneficial. If nothing else, Steve Jobs legacy will be helping out these kids in ways he never even imagined. I saw it give a voice to another little girl who couldn't use her own. This is not a commercial for apple, but this one device, that can keep up with the 5 minute attention spans, and can sneak in some reading lessons and counting lessons, etc. brought a little sanity in my life. Dare I say ... the key to happiness is an IPad?
Thursday, June 16, 2011
Missing parts
A few weeks back, we were getting ready for the Fragile - but not broken - X walk. While the rain was pouring down outside, my daughter asked "Mom, can they put the missing parts back in?" Even though she didn't say it, I swear her next words were "so I can be like the other kids". I was completely speechless, and that is rare. We weren't really discussing Fragile X, but she knew what we are getting ready for, and she obviously was thinking about it. I can't say that I ever really discussed it with her, other than saying that God made her a little differently. Obviously she has been listening in to my conversations with others when I describe Fragile X. This is the girl who gets zeros on all her report cards - below grade level. Maybe on letters and numbers, but I swear she can read minds.
The next monday morning, on the way to school, she said she wanted to be a doctor. Well I asked her what kind, because unlike most kids, she has seen many varieties. She said she wanted to help people. Speechless again. My unspoken response to her question before, you see, was that doctors are working on it - because they want to help people like her. How many pieces can a heart break into?
While I carry this hope around with me, I do not want to tell her. I want her to accept who she is and not be relying on a Dr's future fix. It is hard enough just being a kid today.
By the time the walk started, the rain had stopped, the sun was shining and it was wonderful to see all the people who came out to support these kids. And snaps to everyone who put the walk together. Thank you to everyone for your support and your efforts.
The next monday morning, on the way to school, she said she wanted to be a doctor. Well I asked her what kind, because unlike most kids, she has seen many varieties. She said she wanted to help people. Speechless again. My unspoken response to her question before, you see, was that doctors are working on it - because they want to help people like her. How many pieces can a heart break into?
While I carry this hope around with me, I do not want to tell her. I want her to accept who she is and not be relying on a Dr's future fix. It is hard enough just being a kid today.
By the time the walk started, the rain had stopped, the sun was shining and it was wonderful to see all the people who came out to support these kids. And snaps to everyone who put the walk together. Thank you to everyone for your support and your efforts.
Tuesday, May 3, 2011
The Electrocute Snake
The other day, we caught a break in the weather and I took my daughter to the park. She managed to find a few boys to play with - one her age and one a little older. They were very nice boys and they were getting along very well. One of the boys had 2 wooden snakes with him, the kind that are made up of small wooden segments painted like a snake that allow the snake to bend and 'slither'. This boy offered one to my daughter, which she gladly accepted. Her main joy in life is playing with other kids. After a little while she announced they should play "electrocute snake". I have never heard her say this word before, so my first thought was the snake would be electric and would light up. The next thought was that it was simply 'cute'. When the boy asked her what she meant she announced, "You know, if you touch it you get electrocuted and you DIE!" Brilliant.
Am I really celebrating the fact that she is playing a game that involves pretend pain and death. You better believe it. My fragile X kiddo typically plays in an organizational manner. Pack up the baby and her clothes and move to the other side of the room. Unpack, change her clothes, re-pack and move again. Or perhaps she just arranges and rearranges the furniture in her dollhouse. There is actually very little role playing (or pretending) taking place. She just organizes things. The type of play where you imagine you are something else and carry out a series of fictitious events involves a much higher level of thought process. It is called executive functioning and is governed by the part of the brain that is very weak in my daughter. She has almost no short term working memory and sequential thinking is very difficult, but it is critical in pretend play. You have to remember what you just did and keep building on the story. When she demonstrates something that involves this type of functioning I am very excited. It also shows that she was able to stay in context with the boys (they were playing 'war') and come up with something they might like to play. This is very sophisticated engagement with others - another thing these kids are poor at. Bravo! Maybe I need to let her play with snakes (and boys) more often. Or not!
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?
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?
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?
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.
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
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.
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.
Thursday, March 31, 2011
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.
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.
Monday, March 28, 2011
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'.
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.
Monday, March 7, 2011
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?
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?
Wednesday, February 16, 2011
Welcome to an extraordinary journey
About a month ago, I was watching the latest Narnia movie and I was struck by the line "This is quite and extraordinary thing, you must be quite an extraordiary person" (or something to that effect). This keeps playing in my head.
Extraordinary things happen to extraordinary people.
My daughter is extraordinary. She was born with a spontaneous genetic abnormality, one that is shared by about 20 known people in the entire world. I think she qualifies.
This condition does not have a name, but it has the same result as fragile X, so it is labeled Deletion Fragile X.
The last 7 years have been a mad rush down a blind alley. There are no rule books. Nothing pertains to my kid. Everything is trial and error - from diet and medication choices to behavior and education strategies. Perhaps I am not as blind as I was even a year ago, she finally has a diagnosis, but I still have no idea what is at the end of this alley.
This blog is to help me navigate this journey and share my experiences, but if I am truly honest with myself, it is to help me accept the extraordinary circumstances of my life.
Extraordinary things happen to extraordinary people.
My daughter is extraordinary. She was born with a spontaneous genetic abnormality, one that is shared by about 20 known people in the entire world. I think she qualifies.
This condition does not have a name, but it has the same result as fragile X, so it is labeled Deletion Fragile X.
The last 7 years have been a mad rush down a blind alley. There are no rule books. Nothing pertains to my kid. Everything is trial and error - from diet and medication choices to behavior and education strategies. Perhaps I am not as blind as I was even a year ago, she finally has a diagnosis, but I still have no idea what is at the end of this alley.
This blog is to help me navigate this journey and share my experiences, but if I am truly honest with myself, it is to help me accept the extraordinary circumstances of my life.
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