Saturday, May 30, 2009
Zach had a bit of a hard tiem with the new environment at the bowling alley. I made special cupcakes for him - but they were strawberry and kinda gross. When he saw the real cupcakes come out - he went nuts. I felt so bad that I didn't make him better cupcakes. I thought I had my bases covered by just having the ones I made and bringing GFCF sprinkles. He saw those chocoalte puppies and Steve had to leave the building with him. I suck. Now I know to make a better effort next time - he likely would have sat around with the kids and started to mix more if he didn't feel excluded from the cupcake ritual. Like I said, I suck. Won't let it happen again.
We have a weekend with no therapists, no social commitments, no major craziness? YES!
Well, no. I forgot about the car thing.
One good thing about the car thing: all the police stuff should now be over with pending no additional info. coming through. All the paperwork has been filed. Our stolen car incidence has caused a string reaction of things, most notably, my neighbor now keeping their garage door closed, a neighborhood watch group forming, and the lead story on Channel 3 NBC 11:00 news a few nights ago with the officer who has been working with us in our neighborhood. Yeah.
Now the bad thing about the car thing: we have to get a new one. Today should be the day. Wonder how the car dealership is going to do with two crazy children running around the showroom. Maybe they'll give us a better deal just to get us out of there. That's what I am banking on. Gonna wear the autism awareness T-shirt for some inspiration and maybe even a little pity.
OK - so maybe things are not going to be as calm as I would like. But no sick kids and time to just hang with the family will be great.
Thursday, May 28, 2009
Wednesday, May 27, 2009
Zach has been tantruming since the last bout of illness. I don't know how to explain how much worse it is when he gets sick than Sophia. It's not just the illness, but the aftermath too. He gets out of the routine of his therapy and gets angry when we start the routine again and thus tantrums. Now today, having realized I am home, he gave one of the therapists such a hard time, my nerves were shot by the end of the session. It wasn't just the crying, it was the screaming, and hearing thumping indicating he was throwing things, in this case himself, against the ground. Think about this going on for an hour and half folks. Unfortunately, because Sophia was sick on the couch, I couldn't just leave the house and go for a walk. Instead, I heard it all and my nerves were pretty frazzled. The goofiness is that this happened during his second session, and oddly enough, he was fairly compliant during his first session. I sat in on a portion of the first session, which I think may have helped.
Zach has begun to attempt to count. It is pretty funny. He actually goes up to 20! Mind you, it isn't exactly consecutive, but it is sequential. It usually goes something like this:
Me: zero, (all mathematicians recognize the importance of starting with zero), oneLet's see if we can get him counting on his own up to 10 and then twenty with written number recognition by the end of the summer. That would be so cool... Yeah Steve and I were those kids who liked math - we're engineers! Duh!
Me: seven... eight...
Me: no Zach, ten, eleven...
Me: no Zach, eleven, twelve
Me: No, fourteen, fifteen
Me: No, fifteen, sixteen
Me: *sigh* sixteen, seventeen, eighteen, nineteen
We are in the process of trying to find a new vehicle at this point. The Avalon has served us well, with 13 years under her belt, and 183,00 miles. Unfortunately, it has a $1600 bill associated with it to get it past inspection, and will likely need some more work after that. So we are rushing to find a car. I hate having to do something like this when we have more important things to spend our time on.
Insurance reform is so important to us - I cannot even emphasize this enough. Steve would like to get a face to face with our local state representatives. I think this is a great idea. I think this is absolutely necessary, our families future, and so many others, are dependent on it. If anyone out there has any ideas on how to get that through to our state representatives, would love to hear them.
I am looking for therapists to work with Zach on days when the other therapists need to take off, in the afternoons, evenings, and on weekends. They will need to be trained, most likely. Ka-ching. I absolutely cannot lose my job right now. This will be too much money. But it is so important that he get all that he can right now. We have gone from a nonverbal, nonsocial kid - to an engaging kid who is playing with cards and starting to count. This is some major progress - and it will only go faster and faster as times goes on up to a point.
The magic age of 3. Zach is rapidly approaching this number. Such a critical time in brain development. The influence of early environment on brain development is long lasting. The environment affects not only the number of brain cells and the number of connections among them, but also the way these connections are "wired". Zach needs the additional stimulus in his environment to form the appropriate connections or "wiring". According to research reported in Early Learning Left Out: An Examination of Public Investments in Education and Development by Child Age (February 2004), 85 percent of a child’s core brain structure is formed by age 3.
Does anyone out there get that we have to do everything we can now? If this was cancer, I feel like everyone would be hopping. This could be the difference between a functional and non-functional individual - a lifelong disability that no radiation, or chemotherapy can rid. It might not be life or death (although indirectly it may be) but it is totally life affecting. Do people understand that there are others out there that go to college and get jobs, and those who are institutionalized because of dangerous behavior or total inability to care for themselves? This is huge people. Please try and understand that this is such a race against time as critical as a child with any life altering disease. He may look fine, but the course of this child's life is destined by the intervention he is receiving right now. I feel like there are so many out there that don't take this seriously because they really haven't thought it through and are responding based on their emotional response to a cute smiley kid - what's not to smile about right? Get over your instincts - autism is an invisible disease and it is very serious.
Friday, May 22, 2009
The facts - when Zach gets sick and so does Sophia - he becomes much more ill - holding onto symptoms longer, being more lethargic, higher temperature; exaggerated versions of whatever Sophia has in many capacities. Zach has been ill much more often than Sophia ever was, and gets sick with things before Sophia and sometimes gets things and Sophia never does. If I had to wager a guess, I would think that Zach's immunity may not be as robust as Sophia's and I am wondering if it is lower than most people. Certainly, the fact that his autism symptoms are more prevalent during these periods indicates to me they are aggravated by his immune system. Dare I say they may even by caused by some immunological response?
Even if you don't buy the biomedical causation of autism, anyone who works with kids on the spectrum, and likely any child with special needs, will tell you illness of a child is tough, a child with special needs just that extra amount more stressful. Illness can bring about really terrible behaviors and trigger worsening of symptoms. More often than not these kids can't tell you what is wrong or where it hurts, you just have to guess. Routine virus or ear infection or appendicitis? Roulette anyone?
Just treating Zach's fever isn't routine. There is some research out there that states that acetaminophen (Tylenol) impacts glutathione levels, especially in kids with autism. Some even question whether the introduction of Tylenol and demise of aspirin due to its association with Rye Syndrome have some link to the increase in autism cases.
Science Lesson of the Week:
Glutathione is one of a group of peptides (links between amino acids) called a tripeptide because it contains 3 amino acid bonds. It is an antioxidant, protecting cells from toxins such as free radicals. Low levels of this peptide are associated with poor immune responses. (and other issues too)
I interpret this to mean that if you give Tylenol to a sick child, particularly one with autism, this may slow down the bodies ability to heal itself. I have had several conversations with mothers who have said they preferred ibuprofen over Tylenol, that it works faster, better at reducing high fevers, and lasts longer. I find these anecdotes interesting after reading some of the research.
Anyhow, it's 5 in the morning and I have been up straight for more than 24 hours. I have been up most of this night, most of it from fear that he is dehydrating. I cannot explain to him the reason drinking is important. I am sure his stomach feels like hell after watching him puke so much, so he likely doesn't want to stick anything in it. So I have been slowly here and there, using an eye dropper, dropping water into his mouth in his sleep.
This likely is making me feel better than him.
Reason is sometimes lost to emotion when you are exhausted.
Thursday, May 21, 2009
What was that about? Steve was so exhausted he was mad at the little guy. Totally understood.
But what did I do? I played with him. And then we sang. I knew this would soften up Daddy a bit in his way-too-tired state. Yes Daddy was surprised when I sang to Zach and left out words - Zach filled them in.
Me: Twinkle twinkle littleWe also did Row Row Your Boat, the ABC song, and Ring around the Rosy. Yup - he filled in the words here and there where I paused. I was tired - but the joy of this moment, even at 3 am, will not be reduced by the exhaustion.
Me: How I wonder what you
Me: Up above the sky so
Me: Like a diamond in the
Me: Twinkle twinkle little
Me: How I wonder what you
Tuesday, May 19, 2009
I cannot believe it. Yesterday was a beautiful day, the sun was out, the temperatures were perfectly comfortable, the kids slept through the night, and my niece showed up for babysitting the kids and I could tell something was wrong. My niece was the one who called us to tell us that the car was missing. She also was the one to file the report for us because someone had to be physically present to file the report. Well, apparently, the Camillus police decided to try and accuse her of doing it. This makes no sense for so many reasons, that I am not going to waste the ASCII characters. M.'s big brown eyes had a look I recognized since she was a small young child. I was ticked that they had accused her of this, and knew she was hurting, because that is the type of person she is. I can remember her wailing as a child while watching the movie E.T. My mother and I will recount that story every now and again - M. is a sensitive person.
With all the commotion, I totally blew it. It was written on 3 separate calendar's but that means nothing. My memory is shot. We missed Sophia's big meeting with the school district. How could we? I am so angry with myself.
Thanks to Sophia's angel, also known as her occupational therapist D., Sophia will continue to receive services this summer and next year in school. I am so totally excited. D. really advocated for Sophia - she is a terrific therapist and really takes care of her kids. What would have happened if we didn't have her? Rewards must be bestowed...
Yesterday, the Government Accounting Office released a report entitled "Selected Cases of Death and Abuse at Public and Private Schools and Treatment Centers". The report discusses the use of restraints and seclusion. It does not discuss if using restraints and seclusion are beneficial. It discusses the problems found when using these. A review of several cases of abuse of these methods read as follows:
The cases share the following common themes: they involved children with disabilities who were restrained and secluded, often in cases where they were not physically aggressive and their parents did not give consent
After reading the report, I wept. I will not debate using restraints or seclusion. I understand why educators may need these with certain children. What made me so upset is knowing that some people are in the wrong line of work, and rather than doing the right thing, they have abused, some even killed children, children who were of the most vulnerable stature, who their parents thought were getting appropriate care and trying to better their lives. And many of these teachers are still out there teaching.
To read the report, the GAO has it on their website.
To read an article about the report check out this at CNN.com.
Soapbox time. I have some friends who are teachers. I have little doubt that they are good at what they do. This is not directed at them, and likely a majority of the teachers out there who are doing good work. Some people go into teaching to be a teacher, and some go into it to teach. What do I mean? Some people want all the perks of teaching: summers off, decent pay (at least in NY), good benefits, pension, job security if tenured, lots of vacation. Some of these people skirt their way through the system, doing what is minimally required to keep their job. Others out there want to be teachers, meaning they have a genuine interest in providing knowledge and learning skills to students of all types. They recognize the difficulties of the position, and take the challenge. Some of these teachers are more gifted than others, but these types of teachers make a difference, although they likely don't receive the accolades they deserve. Those who do the minimally required are doing a huge disservice to our children, and thus our future.
In the analysis, I realized this holds true in many professions, but most commercial professions, especially in hard economic times, don't tolerate minimum work. Take it from me - I am on the hit list at work right now because of my inconsistent schedule.
Engineering has been a lucrative and enlightening career choice. It definitely suited me. Steve and I got along so well because our common interest in most things electronic and science related. However, I don't know if it ever was my passion. At this point, I feel like I am doing a disservice to my profession and the customer's I serve. I am becoming like those very teachers I criticized above, complacent and doing the base minimum. I am just not the sort of person who will ever feel good about themselves if they aren't able to do a good job. That is why I went down to part time status in the first place when I had children, I knew those little rug rats would be a distraction.
Life is not easy - for anyone I might add. Work is difficult. Life holds in it many distractions. I am terrible about not being easily distracted. If my zeal for what I was doing was as strong as the emotions I have from the challenges I face, perhaps work would not be a problem. But it is. It is becoming more of a funding source than anything else.
Has anyone ever taken any of those career choice personality tests before? They try to tell you career choices based on personality type. This is helpful to a point. I know I am reasonably smart, analytical and like some control of what I am working on. Yup. I take these tests a lot, and really feel like they offer very little. What I finally realized is they never hilighted something that really drives me emotionally. I look back at my life now and see a very strong personality trait (for better or worse) that I never realized I had before: I hate injustice, especially to the weak and vulnerable. I won't necessarily stand up for myself very well in many situations, but if I feel someone is taking advantage of someone else, I go berserk. More so than most people, I now realize. In fact, people think I am a little strange this way.
I watch out therapists come in and out of the house, and I wish I had their gifts. It takes each therapist at least 3 sessions to drill into my humble little brain how I should be working with Zach. I just don't have it, and have been so disappointed that way. But I want to do something to help Zach and the others out their in need.
I have begun looking at law programs with a disability component, a lo' and behold, in our very own backyard, Syracuse University not only has such a program, it is one of the few universities with a specific programs for this. It is really clear to me what I should be doing. But at $43,000 a year tuition - I have no idea how we could manage it, especially at Zach's bills estimated at $50,000 next year, and the loss of income from my job. If God's hand is involved in all this, I want to see what trick he has up his sleeve in getting the financial stuff figured out.
Feeling a bit neglected by God lately, I have to find a way to make this work if for no other reason than as a model for my kids. My children have taught me more about myself than I could ever teach them.
Monday, May 18, 2009
As the phlebotomist lined up the vials of differing colors, I watched as she took out 1, then 2, then 3... and finally 13. My heart sank. Could they even get that much blood out of the little guy safely?
Zach cried at first, Steve held him in the chair, Mommy sang and pulled out toys from her bag of tricks to distract. After the initial cry for the pin stick - he was just awesome.
Steve, being the smarty pants that he is, took the stuffed Tigger toy I brought and placed it in front of the needle in Zach's arm, so he could not see it. Very useful. Then we sang "Pop goes the Weasel", which he sang the pops which was too cute. After a few minutes he began to get restless. Out came the singing Barney toy... "I love you, you love me, we're a happy family...." It lights up and plays too loud, in other words, it's obnoxious. A terrific distraction for my favorite little boy.
The minutes were passing, and there were still several vials to fill, but the blood was starting to come out slower and slower. I got mad at myself for not having made him drink more. The phlebotomist stuck the needle in a little further or jiggled it around or something, she moved the darn thing and Zach didn't like that. Several more minutes, and her wiggling the needle around continued. A few more vials, and finally she called it quites at 11 while saying: "They'll work with what I give them." I loved her attitude.
She went on to say that she was impressed with Zach. We all were. My fear was not unfounded, it was still a lot for him to go through. We are just starting to see what my little trooper is made of. They way he did inspired me, gave me hope. On this day Zach was my hero.
Marriage is tough stuff. I never thought it would be easy. I never thought it could be so hard, either. There is no time for each other when you have children which I hear is very common, right? Add to that the fact that every moment of supposed free time is spent conducting research if not doing therapy with Zach or trying to give Sophia the attention she needs and deserves. Things like intimate moments or even one lousy lazy hour spent doing nothing together are a definite thing of the past. Steve and I barely speak. What is there to say to one another? This stinks.
I had read statistics when I first realized what was going on with Zach that said 85% of marriages with children with autism end in divorce. I soon realized this statistic came from nowhere - there was no conclusive study that determined this, no census data. Someone just said it one day, and it made sense, and was spread around. Autism is excruciatingly difficult to handle and adds and inordinate amount of stress to our lives.
Steve and I have had far from a perfect marriage. We were older when we married, and the two of us were quite set in our ways. By the time Sophia was born, we both felt our lives threatened by the little diaper wearing sleep stealer, and trouble began. We have never quite been totally unified since we had kids. We have somewhat different parenting styles, which created conflict. Note: This was long before the dx of ASD. This was even before Zach was born.
We were managing, and still laughing, which to me is the barometer of "is this relationship still working?" There is just too much pain and stress to laugh right now.
Now lets look at a marriage on autism (sort of like your brain on drugs). I was going to try to explain what life is like with autism, but found this entry from another blog and decided that it was a decent summary
"...[there is ] therapy galore. Then you spend your time and energy finding the best doctors, therapists, teachers. Fighting with insurance companies, school districts, and of course yourself. You deal with guilt and questions and wondering what more you could do and should do and might do. No one will watch your kid so you can go out. If you want to pay someone to watch your kid you'll be paying double what a standard family pays. You can't do anything without a huge disclaimer and explanation. You have more medical bills than you can imagine and no money to do it. Insurance doesn't cover most therapies so you sit there and wonder whether or not you can find a way to pay for therapies that are $100+ an hour out of pocket and worth every penny. Oh, money? number one cause of divorce? HUGE issue with families with autism in the picture. Did I mention those copays and medical bills? Dont' forget extra gas. Consults. Therapy tools for home. Special diets. Supplements.This summary doesn't include our other issues - some of them typical issues of having 2 young children,jobs, a home and some of them life's little crisis - such as Mom's lung cancer and hip issues, my about to lose my job, Sophia's disability, stolen cars, messy family situations, still fighting the autoimmune virus of several months. Let's just say with all the high priority things going on, our marriage is at the bottom of the to do list.
Then the stress. Every day activities can flip on a dime.
Steve and I care for each other, but we are not necessarily always the most complimentary people to one another when things get rough. Our situation feels so dire, and we have so little help, that we are clinging to one another for dear life out of necessity I am afraid, and not out of love. I never want Zach or Sophia to feel responsible for this, they most certainly are not. We were sort of off even before all this crap.
I keep on hoping that when we get to the other end of this tunnel, we will get a chance to meet one another, fresh and, hopefully, fall in love again. We can discover the people that we will have become, and hopefully really like who that person is, and commit to one another again. Right now we are committed to our family and our marriage as the skeletal support system to hold up the rest of the family body.
I remember when I realized that marriage was not about the commitment to the other person. People are faulted and will always let you down. If your commitment to another is based on your perceived notion of their commitment to you, your marriage will only work under ideal conditions. Marriage is about a commitment to the institution, not the other person. If you commit to the marriage, then even when the other person is failing, it will work out in the end. This is not to excuse bad marriages where there is abuse and complete unhappiness, these are different circumstances. I just laugh when I read that lack of communication, finances, or sex cause divorce. Steve and I should be toast if this were true. Divorce is caused more often than not because people give up. And sometimes, you should give up. Some things don't work. I hope that Steve and I come through in the end. I really do. It breaks my heart to think that all this shared experience could end up as baggage.
We need to laugh, but how does one do that when their two most treasured creatures are both going through so much life stuff. So that is why I write this blog. Sophia was an exemplary 2 year old troublemaker. She got into everything! At one point when she broke into the locked pantry, and spilled cocoa all over the kitchen floor, pantry, herself, the dog and lets not forget a few heating ducts, I thought I was going to lose it. I decided to pull out the camera instead. I snapped the picture and immediately sent it out to friends before I even cleaned the mess up. I realized that although it made me want to pull my hair out at the moment, I would likely laugh about it one day. I really want to laugh about all this one day. We need to laugh to get through this. Even when your heart is broken, things can still be funny, and you should still laugh.
Wednesday, May 13, 2009
Anyhow, I called a neighbor to ask her if she saw the car, or anyone suspicious around the house. She asked me how I could remain so calm during this, and I am not exactly sure. Perhaps I didn't want anything to ruin the vacation for my kids. It was fun going out to the beach and watching the kids let the waves crash into them. Thank God for technology, they reached us by cell phone at the beach to let us know the car had been recovered.
Zach was talking up a storm while we were in North Carolina. He was relatively unfazed by staying in a strange bed and slept very well. He loved exploring and running around my MIL's ranch. We were really impressed with the way he accepted the change. He said a bunch of new words while there - sail boat and bathtub come to mind. It was just terrific.
Last night we had a great moment-something I have been waiting for since he was born: I was able to sit with him and read a book! Usually he rushes through the book, doesn't go in order, and gets bored with it right away. You find yourself forcing him to read - not the pleasant cuddly moments I would like. Well last night, it was great, we cuddled, and he said so many words! Socks - he really liked saying socks which he repeated over and over again which made Sophia giggle hysterically. Cup, car, ball, cow, horse - and so many more. We read each word and pointed to the correlating picture. It was so much fun - I can't wait to do it again tonight with him. We basically are sticking with picture books for now. Once I think he has more functional language, we can move on to stories. But for now, having him understand that objects have associated words is the first step (nouns). Then we will tackle actions next (verbs) - run, walk, sit, etc. After that perhaps something more abstract such as colors (adjectives). OK OK. I am getting ahead of myself. I just can't wait to see what tricks he has in store for us next!
Sunday, May 10, 2009
All the therapy Zach is going through is counter in some ways to a mother's instincts. Does anyone ever recall letting their child CIO (cry it out) to get them to sleep when they wake in the middle of the night? I refused to do it until Sophie left us so exhausted at age 2, I thought I would give it a try. The first night she went on and on for 25 agonizing minutes. The second night, 15 -20 minutes. The third night she whimpered for around 10. She's been sleeping soundly ever since for the most part. She occasionally goes through spurts where she climbs in to bed with us, or wants me to sleep with her, and I indulge both of us.
I have to be more careful of my indulgences with Zach. My trying to shield his innocence and disability could inhibit him from a happy life that I want him to have. I am only one person, frail and finite. I think about those days when I will be gone; who will take care of him like I do?
Sometimes during his therapy, I have to hear Zach cry while in the arms of a stranger. I will have to watch him this week as they take vials and vials of blood from him to see if he has allergies, or is it Lyme disease, or is it my very own bad genes? I know the blood draw will hurt him, and there is no way I can explain why we are doing this to him. This is breaking my heart in more ways than I can ever explain. The tears are flowing from me nonstop as I write this, if only my tears could replace his, if I could feel his pain for him, I would do it in a second.
The blood tests, much like the therapy, have some controversy. Some say why bother doing it since even if there is something detected, there are no medical courses of action to treat autism. In other words, some might say I am putting him through something for nothing. But there are treatments, and some people are relaying stories of how they help their children, some even saying the R word. (Recovery that is.)
I think of Zach's future all the time. These tests will provide us with a baseline. As much as I am tough on doctors, I do believe they will do much good in the future with autism and that there are a few good ones out there now. I pray that there will be viable options available to all children soon. Some of the techniques we are doing today will become mainstream for all pediatric practitioners in the future. And there will be innovations. Perhaps based on the findings of these tests we will have put Zach first in line to receive these innovative treatment options of the future. All these reasons to run these tests have little bearing on my heart, knowing, although only briefly, I will intentionally be letting another hurt him.
We feel guilt for the little things we do and don't for our children, thinking that these things may make some huge difference in our child's life. This is amplified many times over with a child with special needs. Why did I not save his cord blood? What about that coke I drank in month 4 of pregnancy? Is it because I let him get immunized? How about the fact that I didn't bring him to the doctor with that one fever that Sophie also had - could that have made the difference? Should I run one more discrete trial? Am I paying enough attention to Sophia? I didn't read the last therapists report...Maybe I should do flash cards? I haven't researched treatment options this week.... I trusted the manager at McDonald's that the french fries were wheat and gluten free. These questions really all boil down to just a few: Why did this happen to him? Is it something I did? Is there something I should be doing? Am I hurting him with what I am doing? Am I a good enough mother?
I look back at the last 10 months, then 8 months, then 5 ,then 2 months and I see the progress he did not make, and now (almost miraculously) has made. This makes those occasional and not so occasional burst of tears while in therapy seem easier to bear. Today, my mother and sister were both amazed at the progress. Is it the cocktail of supplements,the diet, the therapy, his own paced development? It's a little of his own pace, but I feel that what we are doing in its entirety is making a difference. The supplements and diet I believe are treating some of the underlying cause, or at least some side effects of the underlying cause. The ABA therapy acts as a rehabilitative agent, reestablishing old neurons to get them working again, training new ones to take over some of the responsibility of the damaged ones. I am very confident that what we are doing is making a difference. Others are taking note too.
In the end, instead of me teaching my child, my child is teaching me. I have learned to stand up for what is right, to look out for others who are not as blessed as myself or my children, that there are people out there to reach out to - angels among us in the form of therapists, that children are amazingly adaptive special needs or not, being around those with special needs makes you smarter and more aware of the work that needs to be done in this world. I once considered Jowonio as a preschool for Sophia, way prior to Zach's diagnosis. Jownio is an integrative setting, where some of the children are special needs and some are not. After thinking about what was best for Sophie, I decided against Jownio. I was afraid "those children" would bring my very bright and articulate child "down". What an idiot I was. As I stated in a forum once regarding the effects of inclusion classes on typical or gifted children:
I likely would have benefited from having more interaction with those who needed special ed for no other reason than to appreciate what I was given in this life.I have always been a problem solver - likely why engineering was an OK fit. If I had seen the problems of life that some encountered earlier on in life, rather than my very white/middle class/honors classes suburban childhood - perhaps I could have started the problem solving of things that mattered to me more a little earlier.
I am filled with faults, as a person, and as a mother. But that doesn't mean I am not good enough. I am trying, running the marathon with every step being as difficult as the others, yet every step bringing me closer to knowing what I should be doing for him.
In the end, I might not be able to recover Zach, and I cannot change anything that I may have done to have caused his autism, but what good would it be to dwell on this (for me and especially for him?) I can change myself, and I have. And I will change the world I brought him to. Not the way I intended when I was a young, naive, and foolish adult and thought I was hot stuff and had something to prove, but with a heart knowing that someone (many people in fact) needs to do this for all the kids out there. People need to know what autism is, people need to care, people need to get involved even if they don't know anyone with it. The doctors need to quit being mediocre know-it-alls/nots and start being more insightful, the politicians need to make effective legislation changes to ensure the future of those afflicted and their families, the social workers need to quit worrying about peoples feelings and worry more about being effective, therapists need to call it as they see it, teachers need to get rid of their expectations and take on these children as individuals, scientists/researchers need to find a way to establish appropriate mechanisms to survey treatment efficacy since autism is a snowflake disease, and parents need to recognize what early intervention can do and get involved and never stop being involved; life is but a race, and special needs is heartbreak hill.
In the end, I don't know what contributions I will have, they may not be big, but I will try. My children deserve that. All children deserve a world where the adults in it don't give up on doing the right thing. I thank Zach and Sophia for teaching me that I am a flawed yet viable person in this world who has purpose.
I might no be perfect, but I am a good mother. And so are most of the women out there with children, especially the ones who read my whiny blog.
On Mother's Day - take a minute to listen to either or both of the following:
If I Could
Change the World
Saturday, May 9, 2009
Friday, May 8, 2009
Thursday, May 7, 2009
Damn those who decide it is their right to criticize parents for trying this is all I can say. First off - the soft fuzzy warm inviting methods did nothing for 9 months but left Zach (and the rest of the family) in tears. If they work for others - terrific. It was not working for us - 9 months was way too long.
So here is a little article I would like you to read as passed on to me by my terrific SIL Cindy. She knows how to encourage us and we really appreciate it.
From the Autism Speaks website:
In Their Own Words: I Beat Autism By Jason Ross Editor's note: The opinions
expressed herein are those of the author exclusively. The piece is unedited and
its original form, at the author's request.
Hi! I'm Jason Ross and I'm
16 now, and you'd probably just label me a normal teenage kid. I'm a junior at a great little private day school in CT and am involved in a ton of things: my sports - cross country, swim team and crew; Spanish Club, Model UN, school newspaper, jazz band, play writing and Spanish club. I hope to get my drivers license in January; I'm scared about the college process and SATs that start in the spring; and I like girls a lot, but not a girlfriend in sight.
So, all that seems pretty typical of me and my friends.But, I have a history that is different than all my friends, and I'm just beginning to get my head around what my life was like as a little kid. Apparently in July of 1995, when I was 3.5 I was diagnosed with Autism. I guess in some ways it was fortunate for me that I don't' remember a lot of it, let alone the panic that my parents tell me was going on when I was in the middle of it. Later on, sometime around when I was 12 or 13, my parents talked to me about autism, but I didn't really want to deal with it. I'm sorry to say that I guess I was too immature to want to talk about it, let alone do something for others.
Well, now I'm 16 and my best friend went on an Autism Walk. My Mom's best friend's son has autism. I read a lot and know there's a ton being done for Autism research, and to raise awareness. I read through Autism Speaks column on In Their Own Words, and I realized that there was a lot about the challenges of autism and some stories from parents who got their child through recovery. What I didn't see is stories from those of us who went through it. I just thought if I share with you my story that maybe others would have hope that they can also beat autism. Or let me be more precise, if I can share pieces of what I remember, and remind you that I'm on the other side, maybe that will be helpful to others. I hope so.
Memories of Autism:
I don't think I remember more or less than another kid trying to recall stuff from ages 3.5 – 5.5 but I have no frame of reference. I certainly don't remember what my parents describe as a house under siege; panic that I didn't speak, walk/run, nor connect with others like a normal toddler. I don't remember having speech and then losing it, or walking into parking lots because I didn't have any sense of space, and certainly don't remember not knowing who my Mom was! We have at least 20 notebooks detailing my life; I haven't looked at those in ages. Its like looking at someone else's life when I see them. But there's a few things that always linger with me and that is probably due to autism. I have a memory of feeling like I always had to work 10 times harder than anybody in order to get good grades. Now I know there are certain subjects only where I work much harder, like any subject where I have to apply principles to different concepts.
Memorizing the principles is a snap; applying them is hard – so applied physics and applied geometry means I have to work harder than anyone else just to get the B. The second thing is that I can be a 10 times more studious than my friends. I mean that when it comes to having to buckle down and study my brains out for finals, for me that's easy. My Mom thinks that's because I had to work so hard as a little kid with autism, where I apparently worked hours on end. The third thing is that I really love learn about almost anything and because I'm not afraid to experiment, amazing things happen. Friends call me a pure intellectual nerd, and I know they are just joking around. I have a theory that it started with my brain getting turned on during autism.
I recall a lot of great adults in my life; I really liked all of them. I didn't know I was special.
I did a lot at the kitchen table. I remember triangle pencils and mechanical pencils, sitting tall, learning to cut, write, and read. Reading was the BEST! Mom had these cute pencils in a triangle shape that we used when we were drawing or writing. Those were neat simply because they came in a bunch of colors. I didn't like the pencils we used later on – the point kept breaking and the pencil ripped my paper a lot - that was incredibly frustrating for me. I also remember we practiced my posture a lot, and Nancy Dyer would say “Jason, look at me... and things like Sit Tall, Sit Up. Sit Tall, Sit Up...” Scissors were a pain in the neck; I was a jerk at cutting but I guess I lot of boys are.
It never seemed like there was enough room in the holes where I put my fingers. Writing was ok I guess, and I have seen the cute notepads that they used. It has solid lines where I practiced upper case, and then a line in the middle where I'd stick the lower case of the same letter. And reading, I don't remember if I struggled or not. What I do remember is that in first grade I had the best best teacher Mrs. Shuhi, and by spring of first grade I reached a goal in her class.
To this day, I'm in love with reading and I remember being so proud of reaching
Mrs. Shuhi's goal. Mom had a bunch of expressions that I remember: On using utensils correctly, it was “Palms Up, Thumb Up”; on walking up and down stairs,
“Light feet. Light Feet”, and on going right and left it was done in the car with a funny clicker she had, “Right right, right right right... and Left left, left left left.”
Birthdays were always great. I remember my 4th birthday, where Princess Priscilla came to my house and I had a ton of kids over. It was great.
My nursery school was Little Brick; it was fabulous, I made friends there, and my nanny got a job there too!
Sports memories are fuzzy. I loved skiing always but throwing a ball and ball stuff in general never came easily. I didn't throw a ball like a boy does until I was at least 8. I finally made it to the major leagues in baseball and then called it quits. That was my equivalent of making it to the Olympics.
My Conclusion:The darkness of autism – all that therapy and disciplined training are from another world I don't remember too well. Yet, I know its part of me today. I can work very very hard, and spend hours practicing, reading or writing. A lot of this probably comes from my autism training. I know my Mom wanted me to enjoy learning for learning sake,and that's really who I am today. I'm sorry that Autism caused so much pain in my home, but I'm also a better person for it. I know I'm a lucky teenager with a future in something cool. I know if I work hard, good things happen. And I know that I can work 10x harder than others if that's necessary. Oh, and one more recent anecdote. I went to look at a college recently because I have to start thinking about what I want for colleges in my senior year. The person in
Admissions asked me what is one thing that I'd like to let her know. Because I was writing this, I said casually that I had autism as a kid. She said that couldn't be possible; no one beats Autism. I told her I did. She said - again - that I was mistaken. I said – again- that am one of a new generation that beat Autism. I was pretty upset; I know that I'm a lucky one and I better help get the word out. I beat Autism and I'm proud of it!!
I hope I have been helpful.
Wednesday, May 6, 2009
I have been staying in touch with Zach's two ABA therapists asking them how to manage through a few particular situations. Even on vacation, we can't let our guard down. Believe it or not, it was the therapists who actually contacted us to see how things are going. That is the sort of dedications we need and makes me know we are doing the right thing. I just love them!
Anyhow, with limited internet access I haven't been able to post much, although I am logging some of our events on our laptop which I hope to upload at some point when we get back home.
But there is one thing I just could not wait to post about - because it just has me tickled. So this morning, my MIL (mother-in-law) made playdate with a neighbor's granddaughter for Sophia. They came down to pick her up, and I told Zach to say bye to Sophie to which he said:
"Bye Sophie!" Sophie didn't hear him and went off skipping with her new little friend. I held back the tears, since these people would probably think I was nuts since they don't know our situation. However, just like Sophie skipping off, I felt like I could have done the same. My heart was certainly skipping. He said his sister's name today. Awesome.