Thursday, April 30, 2009
So he said a bunch of new words and consistently said some old ones.
Yesterday: milk, movie, all done, help, play, I want, uh oh, star
Look at the word list grow!
Today he said Mlisa to Melissa the babysitter. Whoa!
Now before I say too much, I want you to know that not only is he saying a lot of words, starting to use them functionally, and has better eye contact - Zach is a much happier little guy, too. Nothing can replace that!
As for Steve and I, we don't feel relief yet (will we ever?) but we feel a sensee of moving a little forward after what feels like a lot of moving backwards. Hope? Yup. I realized yesterday through an angel from my past that what I have and am able to offer my children isn't brains, wisdom, financial security, etc. What I can offer them is my resiliency and perseverance - and that is a gift I was given and cannot take for granted.
Wednesday, April 29, 2009
Many of you sports enthusiasts likely know who Dan Marino is. Dan and his wife, Claire Marino, had 6 children, one son with autism. Early intervention was involved and a few years ago, Katie Couric did and interview with the family. Check out how Michael was just a few years ago:
Mike Marino video.
The Marino's started a foundation and have a nice website as a resource to parents, educators, and therapists that can be found at:
I am just beginning to look at this website and see what is available.
Tuesday, April 28, 2009
As a runner, can you ever imagine saying: "don't stretch, and don't go out 3x a week. Just show up to races and run. Stretching, form running, and going out more than just race day is too strict, too regimented." Again, I am sure there are runners out there who take this approach too, and have a good run. Natural athletes who have VO2 levels beyond the average guy can probably go out and push 6 miles without a problem. But take it a further distance, say a marathon, and that guy is toast without appropriate and disciplined training. Or take us non-athletes. We go out on race day and try 10 miles such as the upcoming Mountain Goat without a stretch or training, and guess what, most will not complete, yet a few will. Add the training in and guess what - you can get a lot more to complete - some faster and some slower, but more people over all will complete.
So when Jan Matousek, Superintendent from the Liverpool school district in upstate New York stated in regards to ABA that they would "rather not use the program in its entirety because it feels it is too strict, too regimented." I have to say thank you very little. Mediocrity is not cool. If we all do what is easy, then no one would do anything. This helps our kids who are challenged in ways most are not, yet this could benefit those who do not face the challenges, as well. To Jan I say: get out of your job, because for our autistic kids, you don't have what will work for them on your mind, let alone what is best for them, you are interested in what is easiest to do. No child deserves someone who just wants to take the easy way out.
Zach did not nap yesterday. He slept well last night though. No sitter today - which we forgot about, so Steve is taking the morning shift and I am taking the afternoon shift. We are going to start a schedule board for Zach to see if that helps him transition from all his therapists and activities. The schedule board has pictures of all of Zach's team including Mom, Dad, Sophia, sitters, and therapists. We are hoping this may help him to understand that therapy is part of his day, and that playtime is part of his day and that will help prevent some of the tantruming we have when some of the therapists show up.
Wish us luck!
Monday, April 27, 2009
Zach is saying and signing a few words regularly: no (says), candy (signs), hello (says) and bye (says) amongst a few words reported by the therapists that I haven't heard such as movie. However, we don't think he is quite getting the purpose of language because he is using words to request things that don't make sense. For instance, this morning he wanted a bottle (don't ask me how I know, I just know! Mommy-sense) and he gave me the sign for candy. I said: "do you want milk" while doing the sign for milk, and he shook his head while saying "no" and then pointed "up" while getting frustrated. He then reached for his sippy cup of milk on the counter. I tried to make him say milk, but alas I only got a point and a growl. It was as if he tried every trick in his book - he just didn't know which one was appropriate. The therapists believe he is overgeneralizing his limited words, and claim it is common. He still hasn't had that "ah ha" moment where he gets why the rest of us all talk.
The funny thing is watching him pick up a phone and say "hello" which comes out more like a "ha-whoa". What is going on in that cute little head of his?
Have a field trip to the most on Friday. Can't wait!
Friday, April 24, 2009
"sit" was said right after his father told him to quit standing in his chair and to sit down.
He said "sit" as he sat down.
While running around on what must be one of the most perfect weather days we'll have, he proceeded to climb the rock wall with his bare feet in like 15 seconds in the backyard. He accidentally went down the slide face first, flying off the end of the slide, but shielding his face from anything major. He looked right at me after the surprise and said "OK". ha ha
After sliding and climbing for around 20 minutes, he came up to me and said "orange juice". Steve was there to hear this. It was really cool. Of course it took a bit by the time we got into the house and gave it to him. But it is exciting nonetheless.
Go Zachy go!
Thursday, April 23, 2009
Wednesday, April 22, 2009
Sunday, April 26, 2009 - 9:30am (registration begins at 8:45am)"one piece at a time" Autism Awareness Walk
Where: Rosamond Gifford Zoo.
Description: The 4th annual CNY ASA "one piece at a time" Autism Awareness Walk seeks to promote awareness about Autism Spectrum Disorders including Autism, Asperger's Disorder, PDD-NOS, Rett's Disorder and Childhood Disintegrative Disorder throughout Syracuse and its surrounding areas.
"Kohl's Kid's Korner" sponsored by Kohl's Cares for Kids and the Margaret L. Williams Developmental Evaluation Center will feature the KidzClub TumbleBus as well as a Playplace provided by FEAT of CNY.
- The KidzClub TumbleBus
- Playplace by FEAT of CNY
- Community art project by SU Art Education
- Local vendors, resources and support
- Free access to Rosamond Gifford Zoo
If you have additional questions, please e-mail us at firstname.lastname@example.org
Tuesday, April 21, 2009
Later that evening he was playing wildly with his sister (which I totally love) and he banged his knee pretty good. He came over to me and put my hand on his knee and pouted. I told him "oh no Zach - boo boo, let me kiss and make better." He sat in my lap for a moment while I kissed his knee and then went on to run around the house with his sister like a bunch of banshees. This was so great - it was so normal and he showed he was hurt. Bizarre that this would make me happy but it is a relief to know that he can express to me hurt and I can comfort him and let him get on with things. This is what a mother needs to be able to do for a child, feel like they can comfort a child who needs it and know when a child needs comfort.
First team meeting with the therapists at our house tomorrow night. Go Zach!
Monday, April 20, 2009
In a recent post I stated how I am having a real hard time of it right now. A relative who I believe has not read a lot of my blog read this post and my rant about not getting a lot of support, particularly familial, and sent me an email. I read one paragraph into the email and realized that they were upset with me and were about to chew me out. I had a break down in my house that moment. I sat in the corner crying as the two kids ran around the house, Sophia asking me what was wrong. I didn't read the message any further. Apparently, this person truly did not understand the edge I was standing on. Steve was at work, and unreachable. I called this person's house and got their spouse. I basically told the spouse I was losing it and that I didn't think I could handle reading the message.
I have a feeling that this person took my generalized post and concentrated it on their relationship with us. I was complaining about many people, and not just this one. I want everyone out their to realize that - yeah - maybe I was complaining about you, but no one person, or family, were the source of my complaints. I still stand by my post, and my disappointment and hurt. I will go on to say, that perhaps I have concentrated a little too much on my family, because I was raised and always felt that they would be there for me, above anyone else. I had a huge loyalty and sense of pride as to how my family was this way.
I realize now, that I am the one who needs a paradigm shift, not necessarily them. If we cannot seek and find the support we need from them, then we will get it from some of the other loved ones in our lives - terrific friends, old and new. I don't want to demean my family, and certainly they don't get where we are at if they decide that showing support includes making sure we are put in our place. This doesn't make the situation better at all for anyone. I certainly never want to hurt anyone else, and so perhaps it is just best to shrug this off, and agree to disagree on what constitutes support.
I am sorry that these posts are not more about Zach's progress - but it has been limited, and perhaps, our frustration with that has made my posts turn into more rants. I am angry. Not at Zach's condition, as much as those who blundered in regards to his diagnosis, care and treatment. Add that to the other things life is throwing at us.
His EEG as an anomaly on it - his neurologist said it is normal, two other neurologists who read it said that it was suspicious. What does this mean? What do we do?
Our sitter announced on Wednesday that she can only work 1 day (and we suspect will likely leave us soon) - so now I have to find a trustworthy sitter that can deal with two special needs kids and a crazy schedule at our home. It took me several months to find her! Anybody gotta name?
My Mom can barely walk and has been told she needs a hip replacement. However, her health condition doesn't make her a candidate for surgery.
Zach needs to go in for the following tests: Lyme, Fragile X, genetic testing, allergy testing - do you know how many vials of blood they will need to take from him - and I cannot explain to him, because he has no receptive language meaning he has no idea what we are talking about.
We are still figuring out Sophia and what to do for her. We are getting conflicting advice from various people. Her meeting for the school district comes in a few weeks. She will likely continue services because her OT has been really fighting for her.
Remember the autoimmune virus I contracted late last summer? I realized a few days ago - it is still going. Gotta ask the doctor why. Could this be the reason for the mega hair loss? The various rash/skin patches all over my body? How tired I am? The fever I run from time to time?
Layoffs anticipated at work. $50,000 costs anticipated for Zach next year without that insurance reform. Messing up at work makes me a likely candidate, don't you think?
Looking for one more therapist to work with Zach. Send me resumes!
I write what is on my mind at the moment. This is a log of our families experience trying to help Zach, and I will not censor it, may it be offensive or not. If you find you cannot bear to read my words, I kindly ask that you do not read.
Wednesday, April 15, 2009
Her son's progress has been incredible. He is 6 months younger than Zach, and he was totally not verbal. He is now saying many words, and pointing, and interacting. I have a feeling he will likely fall of the diagnosis. I am so happy - but it hurts at the same time. I wanted this to be Zach's story. I get angry knowing that the lazy county workers and financially wary managers wasted 9 months of extremely valuable time in his life that could have made a significant difference. I will not leave this alone.
I am trying to meet with more executive levels of the county government to let them know of our experience. I am in the process of creating an early diagnosis workshop for pediatricians. I am also looking into legislation to make mandatory reporting of therapists for children at high risk for a positive autism diagnosis. We will see where this will all go.
Zach is doing OK. He is saying a few words (not persistent enough for me to call it vocabulary) and doing some signs (cookie, ball, movie, up) and has begun to show progress in imitating behavior. This is very significant.
We are looking to hire 2 more therapists privately since it appears he may be on the verge of a breakthrough. Ka-ching. I am doing lousy at work again - I guess the depression is in a wave of overwhelming me once again. Steve is totally picking up the slack at home, and this just adds to the guilt and feelings of incompetence. I wonder if this is the reason Zach may not be picking up as quickly - I am not providing the appropriate carry through he needs at home because of my own issues. UUGGHHHHHHHH
Many of you might not know this, but autism is treatable. There are known and documented cases where kids "fall off" the diagnosis even - many of them after intensive therapies have been put in place. (Studies by an ABA researcher named Lovaas indicated 50% of those who received intense ABA fell off.) This is NOT A CURE. It is a treatment that is effective and can make some kids indistinguishable from their peers. I feel like we still have a shot at this. We are going for it - no expense will be barred. He will get the chance that others almost blewaway for him. That is, if I can only keep myself from getting fired in tough economic times so we can afford all this. Please pray that I can get my brain back in some capacity or another as I say a prayer of thanks for an awesome husband.
In the spirit of hope I am trying to instill in others, please watch this and do not to let perceived notions get in the way of reality, All Things Possible:
Saturday, April 11, 2009
I had to hear from someone today how hard life is for someone they know who has a child with leukemia. They went on to tell me how they got together with someone they work with and bought toys for this family, and visited them. This person has done nothing even close to this for us. Leukemia is a terrible disease, and having a child go through it is extremely difficult, I am sure. Maybe I am extremely insensitive and selfish, but I am not sure if our experience with Zach is all that different. At least the medical community is embracing childhood leukemia as a medical condition and is coming up with treatment options. Right now, the medical community will barely acknowledge that there is anything medical or treatable about autism. If our kid had leukemia, maybe someone would make us a casserole and drop it off once in awhile. No one does that when your kid has autism, yet it would really appreciated nonetheless. Why is this?
I know I may be unfounded in saying that there are people out there with a lack of apathy for us. Perhaps they don't know what to do or say. I suppose I felt that the letter we sent out when we realized Zach was autistic would circumvent this. I am disappointed that it didn't totally work. I still think these people stink, that they certainly are not there for us when we are down, and while I may be able to forgive them, it has certainly hurt our relationship. I wish I could say that it was all fleeting friends who were like this to us, but indeed, it is actual family members more than anyone else.
Perhaps people think they would "handle this" better than us. Perhaps they are right. We said we needed help - we heard how "busy" they all are. Oh bite me. When I hear about people going out to dinner, watching TV, going on a weekend getaway, shopping trips, it makes me want to hurl about how "busy" they are. Everyone is busy, and our society allows this as an excuse for bad behaviour, which I find reprehensible. I remember when I had started to get into the bad habit of this myself, I was really appreciative when a coworker pointed it out to me, in a very nice way. It is a bad habit, and everyone does it way too much. So stop, stop right now I tell you, and I will do my best to never do it again myself.
Holy Easter and I have such anger - I hate that one of the most wonderful times of being a Christian is emphasizing what a sinner I am. I pray that I can get through this soon. I pray that someone comes and helps my family just a little but more, someone who may surprise us. We need it right now, Steve, Sophia, Zach and me.
I really would like it if people just checked in from time to time - and for those of you who have done that - thanks so much. Steve and I really appreciate it. For everyone else - is it too much to ask that you stop over for a cup of coffee or tea once in awhile? Civility anyone? I sometimes wish we had never moved, because my friends on the other side of town were terrific at these casual, informal, yet important visits. 45 minutes can mean a lot.
So thanks to all of you who have been there for us. And please pray that I can forgive and get past those who have decided we weren't worth the effort.
Friday, April 10, 2009
Holy water is removed from the fonts in preparation of the blessing of the water at the Easter Vigil. This removal also corresponds to those days on which the Eucharist is not celebrated.
I bet most of you can guess what a lot of my intense prayers were concerning. Anyhow, I "shshshed" the kids a few times last night, and Zach independently "shshshed" me at one point. This was very funny.
Zach was somewhat fussy as he awoke today. Therapist # 1 L came and he engaged with her and cried at her in spurts. I found it amusing the way he stuck his foot out at her to put his shoe on. When she left, he did not say goodbye. OK. He did a high five to her and gave her a kiss, begrudgingly. OK session, working on me being present while demands are placed on him. Thought this might be important.
Therapist #2 H. arrives. A little crying, not so bad. We discuss progress and goals a bit, and off they go to the therapy room. Boy did he cry. It was one of those "maybe I should go for a walk because I don't know if I can take this sort of crying" episodes. I asked Sophia if she wanted to go to Wegmans to get the Easter ham. She replied: "I really want to just stay home and hang out." I understood and respected her wishes. The ham could wait. But could my nerves hold out?
At some point the crying ceased. I went upstairs into an adjacent room to hear "yeah, Zachy" interspersed with a whine/cry and a "good job Zachy!". I had no idea what was really going on other than controlled chaos.
At some point, H. came down to get more cookies. Zach was upstairs by himself, not crying. This was good. She told me - "I don't know what you are hearing but this is a good session." Uh, OK.
Therapist #3 C. shows up. Zach comes downstairs and throws a tantrum on the floor. While he is tantruming (imagine this: full red face, tousled hair, lying on the floor with tears streaming down his face) she shows me the data. Zach was reluctantly imitating her with and without prompts. She said it was the best session he ever had with her, despite the crying. She strongly emphasized this point. I fed Zach lunch, H. went away, and then on to C. we went.
He whined for a bit, and I decided to be present for this session also. He was reluctant in playing with C. but did a bit. She didn't force too many demands on him. At some point, he did say "go" after hearing me count 1-2-3 when playing with a ball. OK, that's OK. I had put my hands over his (hand-over-hand) to get him to sign for "ball" to request it in playing with him. He wouldn't independently do it. Ball game gets put away, and magnetic fish puzzle gets pulled out. We are trying to show Zach to put the pieces in, and he is once more being reluctant. C. then goes on to tell me that he has done the puzzle before in a different session, so he knows how to do it. OK. Next thing you know he says "Cocoa" - so now you know the name of our thirds therapist. It was as clear as day. He went on to repeat it a few minutes later. WHOA?! Cocoa pulled out a book, and asked Zach if he would like to read a book. He then said "book" and came over and sat with Sophia while Cocoa read the book. He repeated book 2 times more. Cocoa left us; I was totally elated.
I asked Zach to "come" to me to get his diaper changed. He said "come" twice as he came to me to get his diaper changed. Throughout all of today's sessions, his eye contact has been terrific. I could not believe my ears - he said someone's name other than mine! Was it functional? Not totally, but it is a step in getting there.
I'll keep on praying.
Thursday, April 9, 2009
2) We received a phone call from her office 10 days prior to the appointment stating that we should take Zachary off all medications (antihistamines in particular) and vitamins and supplements. OK. Did that. Thanks for calling and giving us the heads up. (Point gain)
3) We arrive for our 8:15 appointment. Wait for around 15 minutes (how can they be running late already that early in the morning??? Point loss) Get in, do the nurse thing - height and weight and pulse. Wait a few more minutes. In comes the doctor. We get asked a lot of questions (that could have been asked beforehand in a form - more point loss), I realize if Zachary's records were sent over, she has not read them. Great. (More point loss)
4) While amidst in conversation (answering one of her many questions) she walks out of the room. A colleague of hers had opened the door (without knocking) to ask her a question, and rather than wait for my answer, she requested for me to hold on a second. She came back after a few minutes. She did apologize, but I was not impressed with the way it was handled. I am immediately feeling the doctor ego thing coming on. (Big point loss)
5) When I told her about the GFCF diet, she did not react negatively. In fact, she stated that she knew other families who also had good experiences with it. She went on to say something to the effect that just because there wasn't a test for it, didn't mean that it was a true condition. This is a good thing - a doctor willing to think and not just spew out the limited process learned in med school. (Big point gain)
6) When asked about the differences in IgG and IgE testing, she gave us her take - that IgG is not proven to indicate anything in terms of food allergies. She refused to go into any detail, assuming I wouldn't understand. I appreciated her professional take on it, however, her assuming I wouldn't get a technical description left me annoyed. Is everybody ready for their science lesson of the day? Skip to section 7 if not, otherwise, read on.
SIMPLE SCIENCE LESSON OF THE DAY FROM SIMPLETON LEANNE
Antibodies are things in the immune system that are part of the response to neutralize foreign objects. What sort of foreign objects? Germs for instance (bacteria and viruses). Antibodies are also referred to so immunoglobulins - shorthanded as "Ig". There are different types of Ig's (referred to as isotypes). These isotypes are annotated as IgA, IgD, IgE,IgG and IgM. Allergists primarily work off of testing for IgE levels for allergy type responses. Higher IgE levels when exposed to substance indicate a response known as an allergy. An allergic reaction is immediate and displays itself in differing forms such as eczema, hives, asthma, etc. Testing for IgG responses is considered testing for a less immediate hypersensitivity - undesirable reactions of the body that can create discomfort at least and fatality at worst, but usually not as immediate as and IgE. (Note that it is not necessarily less severe, just not as fast acting.) IgG provides the majority of antibody-based immunity against invading pathogens. Thus the crux of the issue. There is controversy over the testing becuase the body commonly produces IgG antibodies in response to things like food all the time, and coming up with the appropriate testing thresholds has not been verified.
I still have way more to learn about this stuff, but I could have taken her description. She lacked the patience to go over it with me. This loses points in my book. Guess educating the patient's guardian isn't part of the bill. (point loss)
7) They ran absolutely no tests on Zach whatsoever. There was no real reason for him to be there, expect she likely needed him to be there in order to qualify her billing my insurance for $236 for a full appointment. So all that crap about no vitamins/supplements, etc? Just part of some unthinking protocol. I hate non-thinkers. (Point loss)
8) Testing is not conducted at the office. This definitely loses points. We left the office without a follow up appointment becuase the doctor is so booked. More points lost. We were told to go to University to have the blood work done, but they did not schedule the appointment for us. Terrific customer service. (More points lost.)
9) The office staff was very attentive, and smiled and commented on how cute Zach was. Some points gained. The secretary called me later in the day to schedule an appointment for 3 weeks away. (Gained a few points back here.)
Overall, a relatively neutral to negative appointment. Will not give a verdict until we have gone through appointment #2.
Wednesday, April 8, 2009
Normally I'm not the type to pass around internet junk by email, mainly because I don't like receiving internet junk by email. But I came across this essay today on a site that I frequent, and I found it very moving. I thought maybe it would be of interest to you and Steve.
For reference; during the Passover seder, we answer the "four questions" in four different ways: for the "wise son", the "wicked son", the "simple son", and the "son who does not yet know how to ask".
Anyways, hope all is well with everybody. Please remember that Zachary is in my prayers daily, and he will be in our thoughts at tonight's seder.
For those who do not want to link through to the URL, here is the post:
The Son Who Cannot Ask
Praying for My Autistic Son's Redemption
Like the Jews in Egypt, our son is enslaved.
He looks okay, for the most part. Luminous blue eyes with curtain-like lashes and sweet lips set against perfectly rounded cheeks. A charming build, a strong gait, sturdy three-year-old legs.
But he is not okay, and we, his parents, know and live with this every day. He is not okay, because he is enslaved. Like his ancestors, he is in a prison; his is a prison of the mind, perhaps the heart.
Mendel has autism. At three, his words come stilted and only one at a time, spoken with difficulty only when he really, truly wants something enough to say it. Sometimes, he stands at the periphery and, just for a moment, watches cousins or peers at play. He laughs to himself and seems to want to join, then darts off in the other direction because he can't. You can sometimes catch him eyeing his older sister, whose name he will not say, with something akin to interest. But she will take his hand and try to dance, and he will wrestle free and revert to a solitary puzzle.
At three, his words come stilted and only one at a time, spoken with difficultyBut like the Jews in Egypt, we pray for redemption. It is the light at the end of our darkness; the faint dream that pulls us together when we begin to fray. It is possible, and besides, we believe in miracles. The sea can split; our son can talk. His personal exile is deep and real, but there is, always, the possibility of freedom.
An image comes to my mind: Mendel, at two, with a bucket of wooden blocks. Listlessly, he piles them up until the tower falls. He is not perturbed when his sister knocks it over; there is no emotion as, silently, he begins to build again. An evaluator from the State visits and points this out. "He plays with them too often. He doesn't seem to care." I could not see it then, but I do now: Mendel is enslaved, locked in a routine of his own creation, but one that seems to matter little in any sort of real way. And I think of the Jews in Egypt, enslaved in a routine of worthless, meaningless labor, where the work of their hands would crumble, and the bitterness of their troubles made them hard so as not to even care or hear the call of redemption.
Pesach, the Hebrew word for Passover, I recall reading somewhere, can be read as two distinct Hebrew words: Peh (mouth) sach (speaks), intimating a redemption on some verbal level. And indeed, commentaries note a juxtaposition in the text chronicling the gradual descent into slavery. "And it came to pass in those many days, the king of Egypt died and the Children of Israel sighed from the bondage and they cried…" They cried then, say the commentators, in the aftermath of Pharaoh's death, in a period of national mourning, because to cry for their plight at any other time was forbidden by their captors, and so they disguised their pain as patriotism and called out to G‑d.
This was the beginning of their exile, an exile so deep it limited even the words they could say, and, as the generations wore on, entrenched until it had enslaved their very souls: the thoughts they could think; the things they could feel.
And I wonder: How to pull one out of such slavery? An entire people, generations of children lost to the memory of freedom—how to move them from suffocating silence to a proud nation, G‑d's chosen? I look at my son and wonder the same thing.
In Egypt, G‑d sent Moses. Moses, man of G‑d, who humbly bridged the gap between heaven and earth and whose personal struggles and journeys reflected the transformation of his people.
His personal exile is deep and real, but there is, always, the possibility of freedomMoses was a spiritual enigma: a man of Atzilut, says the Kabbalah, referring to the highest of four worlds of spiritual consciousness. Atzilut, from the word etzel, near, describes a world near to G‑d, and distant, in so many ways, from the day-to-day functioning most of us experience. For most of us, living in the world of action, Asiyah, life is a pretty simple eco-system of mind and matter. Our thoughts are grounded; they translate easily into the words and actions that fill our days. We observe the behaviors of our world and act according to its norms. Moses lived in Atzilut, in a world of the mind, nearer to G‑d than to the norms of human life. For this reason, Moses spoke with a stutter. Was he imperfect? Was he shy? On the contrary—his thoughts were of a higher dimension; his reality had little to do with life in this world. He was a man of G‑d speaking to mere men, and the line of communication across such distance inevitably blurs.
A video clip of the Rebbe, stored in my mind: An anguished man leans in to ask the Rebbe's blessing for his son, who is autistic. The Rebbe offers his blessing, and then adds, surely the fact that an autistic child is disconnected from other people shows that he has an even closer connection to G‑d, and spirituality. And I think about our son: he of the intense gaze, the joy he radiates on the holiday of Simchat Torah, the way he probes a Talmud book larger than him and dances to a soulful Chassidic melody. He is a lofty, beautiful soul but it is not enough for me. He is enslaved.
And so I follow the story of our collective redemption, as our ancestors, led by Moses, travel from darkness and boundaries and limitations to freedom. There's no instant cure for a slavery this deep; it's a process.
I think of the initial breakthrough, as the Jewish people left Egypt and crossed through a sea that miraculously, majestically, parted for them and revealed a dry path to go forward. That undersea world – always there but never seen or really understood – opened up in a stunning split of the water covering it, revealing incredible treasures and an entire world beneath the surface. And beyond a physical display, a spiritual revelation occurred then—the knowledge of a G‑dly life-force was so clear to see that even a simple maiden, says the Midrash, pointed at G‑d's presence on the banks of the Sea of Reeds and said, "This is my G‑d."
I can picture the point—it is an expression of that which is clear to the mind, and a still elusive pursuit for my son. He is slowly, painstakingly, learning to point naturally and purposefully, and I wait for the day that he will demonstrate clear understanding with the deliberate direction of a finger. In the trajectory of the redemption, it is the point that seems to pierce through the layers of bondage. We can see G‑dliness; it is so real, we can point to it.
But redemption is a process, I remind myself and require no further proof for this than the Jewish people, mere days after the dramatic events at sea, complaining to return to Egypt. They are still enslaved; their souls still gripped by a deep power. It's a one step forward, two-steps back proposition that is all too familiar.
We know all about the process. Day in, day out, our son sits in a little classroom at home while other children dance and paint in school. He is learning: to imitate, to repeat, to follow instructions and make neuro-connections that he will perhaps one day make on his own. Each step is carefully noted; what he learns, he must then work to maintain. It is hard, hard work but he is enslaved and we have no choice. We wait for his redemption. I clean the house for Passover, pull out the Haggadahs, vacuum the couch and dream of his redemption. He is here; he is hidden; he is stuck. We will work hard, but only you, G‑d, can pull him out.
In the trajectory of the redemption, it is the point that seems to pierce through the layers of bondageI imagine Jethro, venerable father-in-law of Moses, traveling to Sinai on hearing of the giving of the Torah, that grand climax of the exodus from Egypt. What exactly did he hear? asks the Midrash. The answer resonates with me and fills my heart with hope. He heard that Moses had been cured of his stutter, and being a man of deep understanding, Jethro understood this event for what it was: a connection, a link, created between an Atzilut consciousness and Asiyah living. Between the world of the mind and the world of action. A great spirituality finding expression in the functions of life every day. It was redemption, he understood, not just for Moses, but for the hidden spirituality of the Children of Israel, for the great G‑dly spirit that lay enslaved, trapped in an exile that did not allow it expression, nor allow it a voice.
And I think, finally, of the Seder, where we celebrate this redemption by speaking of our freedom, of the great and glorious process that wrought a nation of kings from an enslaved and broken people. Our son will be at the Seder, of course. Of the four sons, this year, he will be the one who knows not how to ask the questions. It is for him that the Haggadah says, "Aht ptach lo"—you shall open his mind and explain to him the depth of the exile from which we were redeemed. It was an exile where the soul and mind were enslaved and had no voice-- an exile that needs no explanation for us. Our son lives in exile every day, and we watch, and work, and pray.
This year, we are enslaved. But next year, perhaps next year, we shall be free.
Monday, April 6, 2009
After staying up most of the night reading educational law books and researching IEP meetings, I was frantic for today's meeting. One book I read was "the Special Educational Battlefield". The name alone scares the snot out of me, and put my usual glass half empty self into a fight mode. As I snapped at Steve about feeling so ill-prepared on the way to the meeting, I realized that whatever would be would be, and that if I blew it because I was ill-prepared, then I would deal with that challenge when it arrived and wouldn't anticipate anything else.
Well, the meeting went really well. Zach is getting his name put on a list for a program, but the school district is willing to hold out until the end of Early Intervention to change anything. This means that we can keep him in his home-based program for ABA all the way until December if we so choose, with Early Intervention picking up (most of) the cost, my rough estimates are $35,000, and our insurance covering roughly $3000. We are anticipating out of pocket costs at around $4100. Is it any wonder the school district would be fine with letting things be?
The problems with this are that if we decide to do a school program with him, ABA slots are limited and will likely fill up soon. If we don't start in September, and wait until January, the program will likely be filled. So what then? This is what I don't know. Will the school district pick up the home based program and run with it? Again, my pessimistic mind says likely not, but I truly am not sure. I didn't ask at the meeting, because I wasn't thinking about that. I was more thinking that the school district was going to push for a program to get started this July, and didn't want that for sure.
I ran the numbers, and at home program would likely cost us in the $40,000 - $60,000 range next year. There goes the update to the kitchen we want to do, and then some. Did I mention Steve is driving a 13 year old car? Because we live in New York, current law does not force insurance companies to cover therapies for autism. This is where I will ask many of you fellow NY state residents to help - I will be sending out pre-addressed/stamped letters to those wishing to help out to send to your state representatives about legislation for mandating insurance coverage of autism treatments, in particular, ABA.
Anyone who has read our blog, or knows our story, realizes that we had NO progress whatsoever using the Floortime/DIR approach. After almost 9 months of not meeting our #1 IFSP goal of getting Zach to point we were less than hopeful. After 10 days of ABA therapy - he was doing it independently and spontaneously. This stuff needs to get covered. It might not work for all, but the other stuff wasn't working at all for us, and there are many more people with success stories using ABA than pretty much any other method. By the way - I think those other methods need to get covered too - whatever it takes. Just like chemo is not the only treatment for cancer, ABA is not the only therapy for autism. Let the experts dictate what methods to try and get it covered.
Anyhow, I will be asking each of youNew Yorkers to write to your Assembly rep and Senator in support of the following NY state bills: S. 2366 and A. 6001. Currently, eight states – Arizona, Florida, Illinois, Indiana, Louisiana, Pennsylvania, South Carolina and Texas -- have enacted autism insurance reform legislation. Several other state legislatures will vote on similar legislation during the current session. Tricare insurance (one of the insurance programs for military and former miltary members) will cover ABA regardless of what state you live in. If we lived in Montana, Blue Cross Blue Shield (our current carrier) would provide ABA.
This will make a serious difference in so many lives - and will help ease the burden of many families and eventually our government. Proper intervention can make the difference between a independent and needing many services individual.
So one battle down, with a whole war to go. Did I mention he said both "down" and "milk" today spontaneously? That's my boy! Please help us help him!
To send an email or create a print out to send, please go to the autism votes site.
Sunday, April 5, 2009
Today we had a really nice brunch at our house for our friends from the old neighborhood. Gosh, I really like these folks. What are the odds that there would be four of us pregnant at about the same time for the first time - and we all managed to have girls and live within two blocks of one another? Even after moving from the neighborhood, I feel so attached to these people. Sophia asked me if I knew a few of them prior to her being born- and the answer is 'no'. We really got to know each other because of the most life altering events in our lives - becoming parents. So there were 11 kids running around the house, and since the weather was a little unsavory (kind of wet outside) we did the Easter egg hunt inside. Zach clung to me like glue at first, but eventually warmed up to the chaos of children screaming, laughing, and running. This was so good for him! I think every time someone comes to the house, it is usually to make him work, thus he clings to me to save him from the injustice.
While at the house, one of the couples who are competitive types, discussed how their son (who is 3 weeks older than Zach) is talking only marginally for his age, but is already riding a tricycle, and compared their son to another friend with a son the same age as Zach who happens to be talking very well, but can't ride his trike. I chimed in with a - "Oh yeah - well Zach dropped the F-bomb before either of your sons! " And yup, it's true. While out of the house yesterday, apparently dear son got into something, only to be discovered by his Dad, who, you guessed it, dropped the F-bomb when he saw the trouble Zach got into. Zach went on to immediately repeat it. Yup. This is why mothers everywhere are afraid to leave their kids with their Dads. :)
Later in the day, the local FEAT group (Families for Effective Autism Treatment) had a Fun Day at Blessed Sacrament school in the city. The place was jam packed - and they had a lot of stuff- including food, games, bounce houses, face painting. It was terrific. Sophia and Zach had a great time. I was very impressed with these people. I was overwhelmed by how had I not known any better, I hardly would have guessed at these kids diagnosis. I was also overwhelmed at all the volunteerism that went into making the event successful. It was awesome. I am very impressed. Zach loved the GFCF pizza (which shocked me) and manged a whole piece of GFCF layer cake in two seconds. There were so many people there. So many. I just have a hard time believing that the increase in number of cases of autism is just because of the criteria for diagnosis being broadened. In fact, Steve has done specific research in this area, and he claims this isn't so. I'll see if I can get him to write a summary and post it.
Zach has begun saying "bye" a lot lately, he also pointed to an apple and said "apple" and then went on to eat one up. He requested an apple using a word and pointing together - this is totally terrific. I am feeling that he may be on a verge of verbal progress. Is it something in the weather? I almost feel like it is. We'll just keep moving.
Thursday, April 2, 2009
I left both my children in a puddle of tears this morning. Sophia particularly didn't want me to leave, and begged me to spend the day with her. Tomorrow and Saturday _ have promised to do just that with her. Sunday we are having brunch at our house and an Easter egg hunt with our old neighbors. Sunday afternoon we have a Families of Effective Autism Treatment event. So we have lots going on, and hopefully, I can play with Sophia like she wants.
Every night, lately, she has wanted to do a "science experiment". Both kids love Sid the Science Kid on PBS. I am not particularly good about doing these projects lately. I need to get back in to the swing of things. Tadpoles will be in the catch basin - we are hoping to catch them in the egg stage this year.
After coming home from work, I was to find both kids laughing and having a good time with their cousin Melissa. I find this totally amusing that I leave them and they make me feel like their world is ending, and come home to giggles and grins. Kids are funny that way.
Zach had a good day with the therapists - and has begun to say "bye" again. This is really cool. Let's hope we can add more to his repertoire.
Tomorrow is let's have a party with the therpapists day (usually 5 come on Fridays). Should be fun.
I have to tell you - it's at moments like these that I say can he recover from this? I know - one word shouldn't give me so much hope, but it does nonetheless. This is how I get through the day.
With all that is going on, we have decided to have no more biological children. In all honesty, this isn't too hard, since we barely see each other let alone sleep in the same bed together anymore. (I fall asleep getting the kids to bed in their bed, and then usually wake in the middle of the night and do my reading and research then. ) I laugh and tease Steve that one day, it's going to be like we are just meeting each other again, like dating.
Steve and I have discussed recovery from time to time. We are shooting for it - we want this kid in college and independent. If things look like they will be going that way, Steve has agreed with me that we can handle more than we thought, and we will likely get involved in adoption, probably from the foster care system. I had tinkered with the idea before, but was totally terrified of a child that might have issues. Having been through all that we have been through, I know we could handle it now. How foolish I was all those years, wasting time and energy that could have been put to better use. What does my mother say all the time? "Youth is wasted on the young."
I encourage all of you out there to push yourself in one way or another - you too are likely stronger than you think. Go do something - mentor a child, deliver food to the elderly, give blood - I know how we appreciate those who help us, and I know there are a lot of families out there in need. OK - get off your soapbox Leanne!
Wednesday, April 1, 2009
He went on to articulate exactly what he wanted for breakfast (sausage, eggs, and juice) and then read the newspaper headlines. We were shocked.
OK - April Fools.
However, yesterday Zach did have a good day. We left for work before he awoke, which I am wondering helped the situation. He is doing a lot of mimicking with therapist H. and our therapist L. has been working on getting him to eat with a spoon and fork (he has it down for the most part). This will make going out to dinner with the kids a nice thing one day.
H. has him mimicking putting a block in a cup, clapping his hands, sitting in his chair, and raising his arms above his head. These all sound like trite things to most of you - but the concept of imitating is so important in learning - don't ever take for granted when your child can do it! He also said "tickle" to H. on Monday, and yesterday told our sitter "Bye" for the first time ever when she left. I was totally elated.
We met with a new doctor of integrative medicine yesterday out in the Rochester suburb of Pittsford. Dr. W. went to Case Western for undergrad, and University of Rochester for medical school. She also did a fellowship with Dr. Weil which I found particularly impressive (for those of you PBS watchers, you likely know who he is. If not check out the wikipedia page.) She reviewed Zach's records with us and discussed what alternative/supplemental approaches we had tried. She told us she feels he likely does not have Lyme disease. She recommended one additional supplement to the one's we are already giving Zach, and increased dosage on two of the others. She also recommended some tests which we will have run. I could tell that Steve really liked her, better than probably any other doctor we have come across thus far. She is very level headed, but open-minded to things that weren't taught to her in medical school (which is quite a bit, especially nutrition). Her year's fellowship with Dr. Weil has made her very well rounded.
Doctors know a lot about medications because they are constantly "educated" on them by your good ol' pharmaceutical representatives. There are no supplement/herbal representatives out there knocking on doctor's doors that I know of. Sometimes I wonder if the FDA would regulate this stuff and get it into the business model of prescription drugs, would doctors be recommending these things more?
I will discuss Zach's regimen in a later post. Nothing that awe inspiring - but may be of interest to some of you who might be interesting in trying some of these approaches yourself.
So today is a Wedesday, and April is Autism awareness month. Look for me in future posts to involve you in my advocacy project for the month: Getting our New York State representatives to pass a bill on insurance coverage of autism treatments.