Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.
Saturday, February 28, 2009
These is for Mia, a blogger/Tweeter who said my flowers reminded her of her the kind her grandmother grew.
This rose bush has been rather persnickety and I am not sure I will get anything this year. These are pictures from the first two years. I literally had to dig it up because we live on a corner end-unit house and no matter what I did, there always was some sort of blight or dusty white stuff or little crawly bugs.
It now resides in our gazebo (yes, we have a gazebo. Got it dirt cheap and paid friends in pizza and movies to put it up). Hopefully it will come back again.
Here in Maryland, all you have is clay soil, and I can no longer till the land and garden the way I loved to before. It was back-breaking and I am in a losing battle with the honeysuckle and ivy taking over my fence.
So, these days, I am relegated to container gardening, which I actually love more, because I get to rearrange everything over and over again. Hopefully, once it is warm, I can blog more about this and put up some video of the raised bed, the only piece of land (dug it up and put down 5 bags of organic soil) that has survived into the 3rd year.
Did I mention I have 13 trees in my yard? Wait until spring and then we can really talk.
Cupcake silicone pan.jpg
Originally uploaded by judielise
I know I never talk about gadgets and cooking, but I am a closet Kitchen Gadget Queen. You know it is bad if you Christmas list consists of mostly product from Procter-Silex, Salton and Rival.
So, the not-so-secret is revealed in this blog. The first with a picture as well I might add. I am coming along in this bloggy world!
Right now, I can let loose on my current passion, but I love shape cake pans. Everything from silicone to cast iron. If it has a shape, I want to put a cake mix in it!
My sister and I were talking about "Cake in a Mug," when my new Lakeside catalog came and this darling little thing was on the cover!
Yessiree, this one will get bought and used. With my kids!! For one, I am always looking for things that will engage my aspie son, especially in the kitchen. If every other area of his life is a rigid routine, the kitchen is where we find his creativity flowing and his willingness to take chances uninhibited. He will love this!
I can hear him already. "That's unusual, Mom." Cake that is shaped like ice cream cones. Mmmm. So, when are we making them?"
Another victory in chance taking, breaking out of the ordinary and it's gonna taste good, too! Win/Win!
#AUTISM #ASD our ABA therapist said friday that our little guy isnt autistic (?) and that he is moving rapidly 2 verbal (many words already!
@nika7k Possible Asperger's? My son started with several diagnoses. At 16, now, considered Aspie. #AUTISM #ASD
@judielise Yep, thats what we were thinking too #AUTISM #ASD
@judielise he is now acquiring tons of words and using in context - LOVE growth spurts - ABA is the BEST #AUTISM #ASD
@nika7k Glad ABA so successful for u. Wasn't around when I really needed it. I support the program. #AUTISM #ASD
@judielise sorry not avail then... Iam profoundly thankful that MA covers 14 hours a week ABA 100% #AUTISM #ASD
@nika7k U give main reason why I support program! So many children out there, older 1s, parents lost w/o guidance. #AUTISM #ASD
@nika7k I had to make it up/create it as we went along. He taught me what worked, I repeated over and over. #AUTISM #ASD
@judielise excellent! in 2 weeks our guy went from just 3 -4 words to MANY more and driven to LEARN more, that last is key #AUTISM #ASD
I believe all children want to interact w/world. Our job=finding out what key opens door connecting child2world. #AUTISM #ASD
And then accepting child's level of interaction when they have reached full potential. #AUTISM #ASD
Friday, February 27, 2009
Life seems to have change 180 degrees since I last posted in this series of updates. I am still saving myself for last. This one will be on my sister.
My sister is 10 years younger than me. She used to be the "popular" one. You can tell I am an introvert and she was an extrovert, because when we were younger, people would say, "I didn't know you had an older sister."
I didn't go out much, loved to stay home, read and draw. She was the opposite. Ballet lessons, movies with friends, playdates, sleepovers. You name it, if it was an event, she was there and probably knew half of the people.
She was always battling with her weight. With diabetes heavy in my family, battling weight is not a good thing. I do, too, but her battle outstripped mine. But something else bothered me, but I could never put my finger on it.
I won't go into the hard years, even though I know they shaped who she is. Those skeletons can rattle, but I'm not touching them. Suffice it to say, by the time, she reached Baltimore with me in 2004, she was over 300 lbs, sick and barely working.
I won't pretend I know all of what is going on. For years, I begged parents and then my brother (who received guardianship over her once my parents were too ill to care for her) that someone have her tested. For anything. Something was wrong. She could barely hold down a job, only lived on her own once for a year and didn't have a car.
Did anyone listen? Of course, not. Judi is that flaky, weird, out there sibling who talks too much, thinks she knows everything and is always trying to get someone looked at.
In 2004, she came to Baltimore, having worn out my brother. She was nearly 30. I hit the ground running with her. Here are some doctors. Here is where to get a job or job training. You can stay with me until you get on your feet. Get to know a circle of friends who will be there for you. Get to know Baltimore.
Two years later, she was still with me, working part-time and had seen not ONE doctor.
I hit the roof. I was about to remarry, give up my little townhome and she had no where to go. This is painful to write, but my sister ended up in the system of homelessness for nearly nine months. I can barely write about that either. A sore spot for only God and I.
We had one good talk before she left in which I told her an old line from old folks who knew better. "God didn't make junk. You are worth something, even if you don't think you are. And, he didn't put you in this family to fail." She cried and it was then, I realized, my sister suffered from depression. Not the light dysthimic type, but full-blown clinical depression.
I again suggested help. And, let her go through that horrible process of homelessness.
It actually helped. She emerged more focused, healthier and motivated. She got a job as a live-in companion for developmentally disabled adults. She bought a car and started taking care of herself. So, I thought.
I noticed her falling asleep everywhere. I mean, sitting up, falling asleep. I pleaded. Get tested. This was after my young son's diagnosis of sleep apnea, and I was on high alert. So, she actually went. Yep, sleep apnea. She had over 40 apneas that night and stopped breathing for nearly 40 seconds. (!!!!) They put her on a CPAP machine and asked her to lose weight. It helped at first, with me insisting on strict usage. She became more alert and could focus better. But, that was not to be the end of her health trials.
July of 2008. I will never forget the month. Trying to get my family into some "culture," I took us all to the Myerhoff Symphony Theater to hear some video game music, played by a full orchestra and 30 voice accompaniment (in my house, you have to think outside the box all the time). The whole family went. But, that beautiful night that saw my aspie son enjoy his first concert, despite the crowds and noise, saw my chronically ill son walk the whole night WITHOUT using the wheelchair, saw my husband sit still and actually enjoy something other than tv, saw us also end up sitting anxiously in the hospital.
On our way out, I heard my sister call my name and as I turned, I watched her fall over and drop to the floor. She laid there for about 15 minutes and then said, I am okay and got up.
She was not okay.
*Sigh* This is hard to write.
The scans showed she had suffered a mild stroke. In fact, before the weekend was out, we would find out that she had suffered one before and three more while in the hospital. Five in total. She is 33.
Her blood sugar was in the 500s.
The doctors looked at her and said, if you don't change, you will die.
There was actually some good news. Each stroke was tiny and left no physical mark. But her memory and cognitive functions have deteriorated.
That was the beginning of change. This is long, so I can't go into everything, but today, she is learning to handle her diabetes. She is on several pills for blood thinning, diabetes and cholesterol. She uses that CPAP, even though the napping has returned after the strokes. She has lost over 30 pounds and is on the good side of 300. She is holding down her job and bought a car. Unfortunately, she still is not treating the depression like it should and is technically homeless as she either works or spends her weekends with us. Her things are still in storage five years later.
I don't know what I want people to take away from this post. This is so hard to write. I continue to stress to everyone, go to doctors. Don't like one, get another one. Treat all of your life, including your emotional one. Be proactive about your health. My sister will always be in danger of a massive stroke that could kill or paralyze her.
But in the end, I think I want to emphasize that depression and possible cognitive disabilities can go undiagnosed and untreated for a person's lifetime. That is what I believe is truly going on with my sister. I stress early intervention for children, so that help can be given early.
And, at the end of the day, we are still taking care of her. She is unmarried with no children. Another member of my little unique family.
Wednesday, February 25, 2009
I take it all back now.
I am having the time of my life! I have met some wonderful people/bloggers. I have connected with AT specialists all over the world. There are nearly 100 tweeple following me!
Of course, this is playing havoc with my home life. Dinner is an hour late and I am estatic if no one is hungry. The laundry is piling up and the bathroom needs cleaning. Well, perhaps, that was TMI.
But, all in all, my itinerary has exploded. Last week, I took webinars for the introverted. Tonight, I chatted in a blogtalkradio show and was quoted on-air! Friday, I will be in my first virtual wine tasting with TwitterMoms.
I used to be very upset about where I lived.
How the neighborhood was atrocious and I never wanted to bring anyone over. Well, not that the virtual world is a replacement for real people. I still talk to my friends, even though most of them live in other states anyway. I even want to try video calls, though I hate the way I look in photos and video.
But, when you are in the position I am in with very little outside life, this is the next best thing. I can stay here, do my schoolwork, volunteer in Africa (almost done the application process!), take care of my son AND drink wine with the girls!
What is not to love?
Tuesday, February 24, 2009
I have always wondered at the high number of loners, single parents and just plain spinsters on my mother's side of the family. Now, I know spinster is an archaic word and I mean no disrespect to a particular aunt who is in that position. She is actually a very vibrant, active woman, but she has never been married, has no children, and as she floats into her 60s, doesn't even seem to notice that difference between her and the other 9 siblings she grew up with.
My sister, at 33, is unmarried and childless. I told her once after the nearly 30 hours of labor with my first-born, "Borrow, rent or lease, but never own." You would have thought I was talking about a car or something. I was delirious, but I think she never forgot it.
That was 16 years ago. She babysits, but hasn't birthed one yet.
I have married twice and each time, including this time, I feel like I could live alone. I don't dislike my husband, just the intrusions. I think that is why I stayed married to my 1st husband so long. He was a loner, too. He just didn't come to me whenever he came out of his reverie. But, that is another story.
Introvertism fits me. After reading that over half of the population is considered introverts, I feel like I have company. Like an internet connection I just haven't tapped into yet.
I also think that my HFA/Aspie son is taking after his family. Yes, I realize that autism is a spectrum and is a very serious neurological wiring concern, but his love of peace and quiet and solitude reminds me of my dad (who didn't get married until he was 50, BTW). My brother, who is married, seems always holed up in his bedroom, which doubles for everything: media center, office, nurturing station. Is there something to a possible HFA and introvert personality? I leave that question open to who ever wants to tackle that one! I don't answer 'em, just ask 'em!
On Twitter, we have a group: #introverts and I quote lines from the book. There is not a lot of activity going on. That's okay. That doesn't bother introverts. We know we are there. Lurking, listening, touching it with our minds. We don't need reams of tweets and discussions to realize our connection.
For once, I feel like I totally belong. My solitude is connected to others in theirs. How perfect a world.
Here are some spots for introverts looking for validation, coaching and life lessons:
Pat Weber, sales coach:
Introvert resources site:
Introversion from a Christian perspective:
Nice new Introverted blog I found:
Sunday, February 22, 2009
Hope you enjoy. Here is a link to the article. And after some searching, here is the book link from Amazon.
Friday, February 20, 2009
The 16-year old in the Unique Family is getting ready to tackle the SATs and the ACTs. I cannot even believe we are discussing this. There was a time when I held no hopes for college or even a high school diploma. And yet, he is here.
Within her post, she mentions a site that is collecting information on colleges and universities that are making strides in providing transitional services, inclusion and assistance for our children to continue on into college.
For my son, we are going to try to go. I am not sure what that future holds, but the opportunities are there for him, and we intend to take them. I will have more on this as the weeks go by. His first SAT test will be in May and his ACT in June. I am looking into SAT prep for him now.
This is important to me because whenever I or my family goes anywhere, it feels like a logistical, strategic operation bordering along the lines of an international intrigue-laden Hollywood movie.
Did you get the boarding passes and seat designations online? Where are the CPAP machines? Everyone has their meds packed? Where are we staying? Are they green, organic and scent-free?
This is just the beginning for this site, but I hope to be able to blog about this a year from now and see that it has morphed into something fantastic that I can take advantage of on a regular basis.
Check it out. Click the title to go to my blogposter's site.
Funny thing, my kids love to stand behind me and watch it with me. You would think they heard it enough during the day that they wouldn't want to hear it in stereo with a musical accompaniment.
Anyway, as General Hysteria say, if you haven't seen it enjoy. If you have, enjoy again! I second that motion.
Click the title link to go to her website and listen to the song.
But, today in my perusals of posts and comments, I came across a devotional from a new person that I have not made friends with so far. She spoke about becoming the type of friend that survives changes and really gets to know one another.
Here is her post:
A man that hath friends must shew himself friendly: and there is
a friend that sticketh closer than a brother.
-- Proverbs 18:24
Close spiritual friends -- the kind that can hold us accountable
when we need it, build us up when we're down, or celebrate with us
when we've enjoyed success -- are truly rare. So many people are
lonely; they're lonely for something, or better yet, someone,
they've never experienced. We have a tendency in modern western
culture to have acquaintances and companions instead of friends and
partners. When things go poorly, when we have nothing to offer to
them, acquaintances can run away in times of trouble or fade away
if things are long and protracted. There are, however, true friends
whose commitment and dedication are deeper than even physical
family. How do I know? God promised it! I've seen it! My family has
been blessed by it! So let's hear the call to be that kind of
friend to others and in so doing, we will often find that kind of
friend for ourselves.
Gracious and holy Father, thank you so much for calling me into
your family. Please bless me as I seek to enter into meaningful
friendships with those in your family. In Jesus' name I pray. Amen.
In this fast and furious world of twittering, facing up on Facebook, Digging it all and remaining Linkedin, I am stopping to ask: Are you really getting to know some of these people? I understand networking possibilities, but are these people you can go to if something catastrophic happens? You may say, I have my family and close friends for that. My point exactly.
My goal is to make a least some of the people I converse with for hours close friends. What is the point of investing so much time if I don't get to that point with somebody?
In the end of our lives, will our Twitter friends be there or our real friends?
Let's endeavor to deepen some of these relationships beyond 140 characters.
Thursday, February 19, 2009
I have decided on a few things for my future studies, and I could talk about that, but right now, it is coming down to the wire for my classes.
If none of you are familiar, University of Phoenix sets you up to take two classes at a time for nine weeks. Those last 2-3 weeks are a killer. Right now, I am working on final projects AND working on individual assignments due throughout the week. My fingers are tired, and my eyes have given out on my at least twice now. I stave off the migraines with Aleve and ibruprophen, but haven't been able to come in here and post anything.
So, I am opening up my blog to guest bloggers. I would love to showcase some other of my new found friends and followers. It could be any subject, though you know I tend to talk about family matters, dealing with disabilities, assistive tech, etc.
I would love to have some contributors. So, if you are interested, please drop me a comment or an email.
In the meantime, I will try to post again soon. I am in Week 7 and there is 2 more to go.
Tuesday, February 10, 2009
This one hit me square in the eyes.
For one, it is Black History Month and I have made no mention of it so far. And, two, I didn't get a single question correct. Not one! Okay, there goes my credibility in disability history. I am really still learning.
To be in all fairness, this kind of subject does NOT appear anywhere in the historical, social or psychological studies I have been exposed to, and, also, haven't come across any books.
This post has opened a whole new area of interest for me. I intend to remain ignorant for only a short time longer.
Go to the site and take the test. See how well you do. Post your comments when you have a chance.
Couldn't pass this oppty to send along some important info and continue to play the tag game. Now, it is your turn! Find 25 Random Facts about your favorite subject (or passion and post them!
I joined in with General Hyteria on how hard life has become, the unfairness of it all, and the inevitable feeling of inadequacy. Oh, how I know how that feels!
There were so many times that I wondered where exactly had I gone wrong. Where had I made the turn that brought me to the spot and circumstances I found myself in now. Was it really a wrong move or was I just whining about my life when so many others had it harder? Was I just not able to buck up, put my big girl panties on (my sister loves that phrase!) and deal with it? Apparently, I wasn't, until I had an Epiphany of sorts of my own-in my favorite epiphany-happening place-the shower.
I will not forget that morning. I probably only had a couple of hours (2-3) of sleep, due to hubby's seizures and sleep apnea, young son's insomnia and the fact that after a year of marriage, we were in foreclosure.
I have to admit, I don't take financial instability well. I will go/have gone without food to save on the food bill, while I watch my kids eat. I will go/have gone without new clothes while providing SOMETHING new for the next school year. So, first and foremost on my mind that morning, was what in the world was I going to do?
Talking to God becomes a past-time when you are a single parent of special needs kids.
You tell Him everything, including your rants. He takes it and usually an answer comes floating down the timeline that makes you really know there is someone greater than yourself out there. You come to realize you can really connect this random circumstance to your rant/prayer.
That morning, I was railing, crying and extremely angry with the Powers That Be. My mind kept going back to several weeks earlier, when everyone thought I was having a nervous breakdown, because I woke from a bad dream and literally screamed and cried for 45 minutes. I remember being paralyzed by fear after that dream. Fear of failing, losing our home, being homeless again (another post for another day), and having to explain to two sets of trusting eyes what Mom was going to do; how Mom was going to save the day again.
And there I stood in the shower, feeling the emotions well up again and threaten to take me over. Sobbing, I yelled into the tile,
"What do You have in store for me now? Why are You doing this to me? Did I EVER suggest that I could handle anything like this? Did I EVER give You an inkling that I could be a leader? Are You crazy!??!! I don't want this family! I never asked for this! In fact, if I remember clearly, I wanted/asked for a career. How long do You think I can last like this? And, what am I supposed to do with this bunch of sicknesses, disorders, neurological atypical..."
In the middle of all of that, I swear I heard in my mind, "You have a unique family."
"Unique. Unique! There is no other family like it, are You kidding?"
But, suddenly, I no longer wanted to stay in the shower, under the pelting water. Suddenly, I wanted to get out and do something. At the time, I didn't know what. I barely knew what blogging was. All I had was an email address.
That was nearly a year ago.
I still don't have a plan, really. I just retell our story. I post stuff pertaining to what affects us. Somewhere in here, I believe is my purpose and the purpose of this life I am living. I don't pretend to understand it, get it or even approve of it. I just know that being unique is important to God. It has been important to one or two followers who comment. It has become important enough for me to deal with my days and nights, keep on moving and writing.
Monday, February 9, 2009
Don't ask me why this tugged at me so hard. The subject matter is diversity and the school system. When I read this, I felt as if, unbeknownst to this mother (who I will not reveal her name, because I haven't asked her permission to do so) diversity extends so far beyond the areas she touched upon. Diversity takes into account the neuro-typical and non-typical children. It takes into account the chronically ill and the disabled. Diversity is not just a poor/rich, white/black/latino/native american issue. As the mother of two children, who do not fit the norm, I feel it is my duty (and my 2nd job) to educate people about diversity and the richness it can bring.
In another post, I read today, a fellow Disaboomer (www.disaboom.com)quoted an Illinois governor as saying "If you are able-bodied and breathing, we want you working." Another blow to diversity when the disabled unemployments rates would raise your hair and underemployment rates hit 90% in some places.
If you ask me, what I really want, I guess I would say, don't be so afraid of diversity. It may not always mean property rates are going to drop and school performance scores will skew downward.
Here is the post as written with my response.
The new Secretary of Education Arne Duncan said he wants his kids to go to a diverse school. Author Eileen Kugler believes that a "good school" DOES NOT look like a scene from The Brady Bunch in her book, "Debunking the Middle-class Myth: Why diverse schools are good for all kids". According to Eileen, our diversity is our strength only if we go beyond celebrating diversity and we take the tough actions that champion diversity -- from supporting immigrants who live next door to having those real discussions with people from different races, ages, and paycheck levels. Check out her website for articles and commentaries she's written for The Wash Post, USA Today and more. http://www.EmbraceDiverseSchools.com.
We were faced with this exact situation. Our assigned school happens to serve one of the largest public housing projects in the state. The children who attend the school from a diverse background, which is wonderful, but the school has to design curriculum for the needs of the majority. Our son was reading before Kindergarten. We struggled whether we should send him to the diverse school or the "white bread" school. In the end, we chose the latter, primarily because we were worried he would be frustrated and bored, as well as the fact that we're not ready to have our kids be subjects of our social experiment.
Anybody else want to weigh in?
Reply by JudiElise 25 seconds ago
I am happy that you chose a school that would create the challenging and engaging environment he needs, but I chafe at when you offer that your child is not ready to "be subjects of our social experiment" or when you equate diversity to living near a public housing project.
I think the statement you make about the curriculum is unwarranted, unless you have examined the curriculum and found it wanting. Have you seen the curriculum for your child's grade? Does it meet the state standards and yours? If you have, and it fell short, then, of course, I applaud your decision. But if it was made without due dilligence, on what did you use to base your decision? As your statements stand, I feel as if you are developing (or exposing) a mindset that borders upon prejudicial thinking.
I realize that when people talk about altering the landscape of our public school system, this can be disconcerting. And sometimes, when these changes are made, this can lead to a lowering of standards in order to meet "Leave No Child Behind" mandates, but this is not always the case. Having the opportunity to learn and, eventually, work in a diverse society is one of the conditions, we, Americans have to work through as the world becomes more and more of a global-interdependent society.
Right now, this is seen as an asset for people entering the workforce today. Colleges teach classes (a required course at some universities) on the subject of culture diversity, because it has become so important to the future of America staying competitive.
I hope your decision turns out well for you and your son. You have started him out ahead of the other children, and perhaps, he will be given the opportunity to join gifted classes as well. But diversity will never take away his abilities nor dull them. Only the lack of opportunity and challenge will.
Sunday, February 8, 2009
After the attention my last post generated, I was completely caught off guard. Friends called to say how it affected them. Strangers called me a hero. I felt warm and accepted and humbled at the same time. My story resonated with so many people! It truly made me feel less alone in the struggle.
Also, I didn't realize it, but it took a lot out of me to write down the last two posts, especially the one about my oldest son. So many memories of hard times, poverty, death and plain ole' loss came flying back up as I wrote those words.
For the rest of that day, I could not help remembering so many other things. Like how we stopped going to church, the movies, outside festivals and fairs when it became obvious that the noise and length was too much for my sons. Or how with $1000 and a cellphone, we made the trek from upstate NY to Baltimore, MD to start a new life, just the three of us.
I used to call us the rag-tag band. I always felt that we were held up by mere strings that any moment threatened to pop. Somehow, they always held.
I remembered how my faith in God went from a philosophical hand-me-down from my parents to a full-fledged walk in grace, as I had no one but God to depend on. God and whatever strength he gave me.
As I get ready to do the last two updates (my sister and myself), I realize that if I do no more and write no more than what I have, I will have given something away that touched people. No one paid for it. People will be able to see that it is possible to walk in wonder, creativity and joy in the midst of constant, almost overwhelming emotional and physical struggle.
That ability or gift is greater than anything I could ever learn in my current studies. And more lasting than any other contribution. Thank you for letting me be a part of your living experience.
Stay tuned for Part 4 and 5.
Thursday, February 5, 2009
It is a mother's instinct that knows something is not right with her child. He was my first, but it was my mother who began to point out little things only a month or two after he came home. I had seen it too, but didn't know what to make of it. He needed to be swaddled. He hated bright lights and hot environments. We could never find a formula he liked and he couldn't grasp breastfeeding.
By a couple of months, he was sleeping in the basement (yes!) in a stroller. No noises with the close walls of the stroller made him relax. I hated it. The empty bassinet with custom sewn covers sat empty next to my bed, while I listened furtively to a child monitor late into the night.
But it didn't take long for me to realize. This kid was like clockwork. In fact, by the time I went back to work when he was almost a year, I handed the babysitter several sheets of paper, outlining everything he would do.
When he pooped. When he ate. How hot the bottles had to be. How thick the formula had to be. When he would sleep. I stressed to her: keep to the schedule and you will have a perfect day. Don't, well, just keep to the schedule.
Now, she must have thought I was crazy, but after two days, she said incredulously, that she had NEVER had a child stick to a schedule so perfectly in all her experience.
He began to talk. Clearly, everyone remembers "tank you" and "pease" at just around 12 months. He walked on time. Everything was going well.
Then suddenly, he began to go quiet. He rocked a little. He stopped looking at you when you called him. Soon, he stopped responding at all. You had to go up to him and talk to the back of his head. After awhile, he flapped, sitting and rocking in a baby rocker he was way too old for. He never picked up any crayons, pens or markers and doodled. He played with the manual can opener. He became preoccupied with trains.
In NY, parents start their little ones off early. By 2 1/2, he was in a daycare/preschool. Within six months, he was out. Wandered around too much, they said. Just left in the middle of class. Nearly left the building. We were back to babysitters.
By 4, he only whistled, grunted and pointed. Growled when you couldn't figure out what he wanted. He wore the same clothes until I hid them and said I couldn't find them, hoping he would attach himself to something new. Went to bed like clockwork and woke the same way. There was no eye contact, no kisses and never a hug. No smiles. He was never aggressive or hurful. Just a little wandering robot playing with his fingers.
At this point, I have to interject that this was the lowest point of my life as well. Within six months, I would lose my job, my marriage, my parents (seven weeks apart) and come to realize that my boy may have something called autism, something I saw on PBS late one evening. Oh yes, and I was pregnant with my 2nd son.
I am going to fast forward through the really hard years, raising two chldren as a single parent for 10 years. My son not accepted in various schools for very long. He had such problems with sensory sensitivities-the bells, chairs moving, people scratching their pencils on paper-drove him crazy.
We moved twice, saw loads of doctors who spat out lines like jackpot slot machines. Lines like, he may never improve (remember this was '95-'96), he would need years of therapy (not covered by any insurances) and you need to get on this or that waiting list for services. And, oh yeah, file for disability. *Sigh*
I remember asking God for one thing. Give me five good years, Lord. Give me five good, long years, and I will prove this kid could learn.
We finally landed in Maryland in 1999. By this time, I had the single mother thing down to a science. And, I knew how to ask questions. "Where does everyone else go?" "Who has a good program?" We ended up at Kennedy Krieger. Test after test finally revealed a diagnosis. PDD/Austism. It would be several more years before it was upgraded to Asperger's Syndrome.
In between is a blur I don't completely remember. Every moment, I poured something into his little thin body and mind. Language, music, news, jokes, colors; anything that got him to make eye contact, make a sound, ask for something with words, we repeated over and over.
One story always sticks out. Sorry, I wish I could remember exactly how old he was, but it escapes me. I remember a class assignment on the number zero. The assignment sheet was a lovely scene of grass, rocks, clouds. The questions asked how many rocks, how many clouds and how many sheep. The correct answer was zero sheep. He kept shouting 5. Over and over again, I went through the explanation. Still 5. Finally, I said, "Well, if there are five, tell me where they are?" He answered, "one is behind a rock, one jumped in the water to get a fish, one wandered off to look at a buttercup (!!), and two went home because they were tired."
I remember staring. Then it hit me. He added! HE ADDED!! And, he talked in BIG, LONG SENTENCES!!!
So, I quietly asked, "If all that is true, everyone's gone. How many sheep are left?"
"ZERO," he announced confidently.
Just imagine so many more years of that, and you have an idea of what went on. Fractions meant measuring cups with food coloring and water. Reading literature meant acting out the scenes or searching the internet for related videos and pictures. Homework took hours, broken up into little chunks. Storytime was always punctuated with extra dialogue and sounds. So much so, he was disappointed when he finally began to read well enough to only discover that all that extra stuff was not written in there. Mommy made it up. It kept him focused.
This is getting long, so I won't go into having to bring an educational lawyer in so he could have an assistant from 5th grade through 8th. How I changed things constantly to build in a tolerance for sudden changes (no meltdowns now, just lots of questions! Why, why, why!) How we still struggle to find volunter work for his community servce hours needed in high school(he is still very reclusive, and it is harder now to break routines).
We have the help of our local DORS (Department of Rehabilitative Services). (DDA wouldn't touch him. Our case manager literally told me I did too good of a job) He will have a driving assessment in March, two weeks of career assessments in June and 4 months of living on their campus when he graduates (2010). We have a social skills group he can go to, but with his brother's illness right now, this, unfortunately, has had to take a back seat.
Today, he is a tall, lanky, talkative fellow. One who follows rules to a tee, never forgets his chores and loves animals (future career, we hope!). He will graduate on time with a diploma. He is on no medication (none were found to alter his behavior; we did do trials). He understands he has "something called Asssspergers (he thinks this is funny), but revels in being different.
He is my wonder. I marvel every day. And, thank God, for an answered prayer.
Tuesday, February 3, 2009
I am not really sure where I left off. There is a litany of disorders: Dysautonomia/POTS, Delayed Sleep Phase Syndrome, Moderate Obstructive Sleep Apnea, and Chronic Fatigue Syndrome. Now, add to that the podiatrist's belief that he has early degenerative bone disease (fancy way of saying arthritis) in his feet and ankles. He is only 12.
All of this adds up to one homebound child. No school, no sports, no friends over for long periods, and since he fainted after visiting a friend's house for only 3 hours on Saturday-waking up to not even remembering going to the friend's house, there seems there will be very little visiting out either.
With all of this, add: 1. the three medications (down to two as of today, since one was causing insomnia); 2. a supplement to safeguard the liver and another to lubricate those degenerating joints; 3. the physical therapy twice a week to keep his muscles going; 4. the special high salt diet; 5. the at least 2 liters of fluids every day; you would think that we would not want for anything from doctors or insurance companies.
And yet, we have been through 3 pediatricians, 4 neurologists, a cardiologist, a pulmonologist, an orthopedic specialist, a sleep specialist (she is still around), a developmental pediatrician (still hanging on), gastro doc (gone), and 3 behavorial counselors (all gone). Now add in the physical therapists and a podiatrist.
Then, last month, I received three denials. One was from Social Security. Yes, he has a disability, but it is not severe enough. Yeah, right. The second was from the insurance company that was positive giving him an electric wheelchair would suddenly result in injury, death and destruction. So, no, you can continue to push around a 200lb boy by yourself. And I have yet to hear the reason behind the denial of the orthotics for his feet.
You can imagine that I am steamed and deflated at the same time. This necessitates the dreaded appeal process.
The appeal process with its additional clinicals, special letters from doctors and 90 days of calling back and forth for feedback is a major drain. And, I was already slated to go through this, so we could drive to Virginia to see yet another specialist.
So, here on my plate is 4 appeal processes. Someone come and haul me away!
But, back to my son. He, on the other hand, had begun to adapt, and is finally showing signs that he will make the best of his sudden changes in life. Of this, I am proud. A year ago, I would have wondered whether we weren't going to need a brief stint in a mental ward. He had gone from a bright, sunny, almost athletic prodigy from birth until 7 to a zoned-out, lethargic, overweight depressive by 10, and by 12, a fainting CFS sufferer with the mind resembling what one counselor called early Alzheimer's. His emotions were so raw and scary that I feared for his sanity. A year of counseling got all of us to cope with what we still don't completely understand. We are all ready to do what we have to do, even though no two days seem to be the same.
He has a Home and Hospital tutor from the county that comes 3x a week for two hours at a time. I am certain that he is NOT on the same level as the other children but I don't remember my 7th grade World Cultures (it was called Social Studies back then!) either. He will understand some algebra, have read through a book of poetry and will master creating Powerpoint presentations. The fact that most of his memory is unstable every time he faints makes it more profound and miraculous every time he passes a test.
And... I shall embarrass him in cyberspace. He has an online little "girl" friend. Yes, puppy love comes to the Unique Family! You can't say her name without a smile coming to his face. "Finally," he gushes, "someone like me!"
My heart almost breaks each time he says it. I hold back the tears and say without a cracking voice, "Of course, you are wonderful. Who wouldn't like you?"
Then the mother kicks in. Will he ever be able to drive? Go on a date? Get married? Hold down a job? These are questions I may literally have to wait 10 years for answers to (80% of children with dysautonomia go into remission in their 20s).
Then I look at the stack of denials and instructions for appeals and remind myself of my most important job. Make sure he has what he needs to succeed now. One day at a time.
One more tidbit to this update.
As we were slowly returning to our car from P/T today, he lets me know that I should be proud that my "greatest" accomplishments were turning out fine. He was referring to himself and his brother. I balked for a minute. Ha! Will my children be my "greatest" accomplishments? How about my career and my writing and what I give back to the community?
"Nope," he said. "What could be greater than a human life able to stand on their own?"
I teared up again.
Nothing, my lovely son. Nothing.
Monday, February 2, 2009
Now, the goal is to make these items affordable for disabled and chronically ill people, who are on fixed incomes without making them appeal to their overburdened insurance companies and flat-broke and frozen asset-bound agencies.
There has to be a way to get this into the hands,eyes, ears and fingers of more people.
Would love to hear comments.
Sunday, February 1, 2009
I have finally and fitfully given in and created Facebook and MySpace accounts. Yes, even, old dinosaur me has decided to create a page and profile. Never mind my school (UOP) has created a profile page in my mailer attached to Google.
Now, let me start out by saying, I HATE MySpace! Most pages on their that I seem to stumble across are ugly - stationary backgrounds with moving written parts, black backgrounds and part of the text still in black (where did the rest of the sentence go?), garish, neon-type colors that make me run from my 22" screen. I could go on...blaring music, profanity, TMI, etc, etc. No wonder it got a bad rap.
But, I am one to be convinced. One of my best friends created a page and closed it to everyone, but her friends. SOoooo, I HAD to get a page to even see what she put there. Nice trick, you know who you are!
However, I have been slowly, but surely launching out into the online social scene and now belong to 4-5 communities, MyBlogLog.com (through Yahoo.com), Twitter and some other message boards. Plus, I have this blog. It only made sense to "go there." And I have.
But what I am really writing this about (this idea just popped in my head) is I would like to see some well-designed and beautiful MySpace pages. No flashing, writhing animations (so distracting), no grunge (is that still even around?) backgrounds.
Really, people, something good to look at.
I want you to give me an url so I can check them out. I might even showcase some of them, if I really feel they are good. Yes, this will be subjective. I am not trying to please everyone's opinion, just my idea of some decent aesthetics.
Leave me some urls, and I will promise to talk about them. I open my doors and eyes to what you've got.
You can click on the title to take you to My Disability Blog or go here for the original article as it appears in the American Chronicle.
Since I am partially deaf (I am just beginning to acknowledge this publicly), this is of great interest to me. Wouldn't I love to have my hearing restored one day.
If you want to see the total article, go here . Post a reply to me or to my blogger friend.
Again, the research is continuing. I would love to see where this goes when it comes to humans.
Are we insomniacs on a molecular level? My son, who has DSPS; is this the reason that melatonin and rigid schedules still do not fix this problem? How do you fix the problem?
These questions and more, hopefully, will come with continuing research.Any questions, reply and we can discuss.
---------------------------------------------------------------------------Improved Understanding Of Circadian Clocks
31 Jan 2009
Scientists from Queen Mary, University of London have discovered a new part of the mechanism which allows our bodyclocks to reset themselves on a molecular level.
Circadian clocks regulate the daily fluctuations of many physiological and behavioural aspects in life, and are synchronised with our surrounding environment via light or temperature cycles. Natural changes in the length of the day mean that an animal's circadian clock often has to reset itself on a molecular level, to avoid getting out of sync with the changing calendar.
Professor Ralf Stanewsky and his team from Queen Mary's School of Biological and Chemical Sciences study the circadian clocks of Drosophila, a type of fruit fly. Writing in the journal Current Biology, they report that the resetting process is governed by three factors, called Cryptochrome, Jetlag and Timeless.
The team's findings suggest that the light responses of circadian clocks are fine tuned on a molecular, by small differences in the binding affinities of clock proteins.Professor Stanewsky explains: "A circadian photoreceptor called Cry is activated by light in the blue spectrum. Once active, Cry then becomes able to bind to a protein called Jetlag. The Jetlag protein then helps to destroy another protein called Timeless, which is used to reset the bodyclock."Crucially though, we found that Jetlag also helps to destroy the original photoreceptor Cry itself. This allows the Timeless protein to reaccumulate during the next day, making sure that the clock mechanism continues to tick."
Article adapted by Medical News Today from original press release.
Source: Sian HalkyardQueen Mary, University of London
Article URL: http://www.medicalnewstoday.com/articles/137310.php