Monday, October 20, 2008
Therapist: “You eat with a…”
…and I do have to report a new one from last week:
Radio: “This is NPR news…”
T: “...in Washington.”
Great fun, and a super party trick. However, a new echoic showed up last night, and I’m having a very different reaction to it. He’s heard people call me by name all his life, and yesterday, T started echoing “Suzanne.” I’ll admit it was funny at first, hearing my son say my given name. But this morning, as he was sitting at the table eating breakfast, he said “Suzanne. Suzanne. Suzanne,” over and over, doing his little finger flap thing. I know it was just a stim. But it really got to me. It broke my heart. This is the one child in the world that may ever call me “Mama” - and he only says it when prompted - but there he was, saying my given name over and over and over again and it meant nothing. AND I couldn’t respond. I ignored it – I had to – because I certainly do not want him to start calling me by name, which very well might happen if I give him a big reaction.
I got really angry, too. Every repetition of my name made the anger rise higher. Stop saying my name. I’m your mother. I am not Suzanne to you. I am your Mama. I have put so much time and energy and life blood into you, and I’m standing here ignoring you because you are saying my given name, because if I react, you will continue to do this. And the hell of it is, you don’t even realize what you are doing. It’s a meaningless stim. But it’s killing me. Do you know how much I ache for you to say “Mama” when you want me? How much I want you to cry out for me in the night when you are sick or scared? How on the few nights when you are able to say “Night night, Mama” unprompted (even though it is within the context of a very routine event every night), my heart leaps with joy? Every “Suzanne” was like a knife in my heart.
He never saw a bit of my heartache & anger. Had to swallow it and go on. I just had to outwardly let it go and go about my morning routine.
Saturday, September 27, 2008
So here we are, a few weeks into the whole detox (chelation) thing. A fellow mom from school asked me if I had noticed anything different – certainly a fair question. We are turning out to be the test run for a few other families at T's school – everyone is nervous about chelation – so naturally, they really want to know how T is doing. As with so many of these interventions, we have not seen immediate, remarkable results (i.e. "I took gluten out of my kid's diet and he started talking in full sentences the next day!!!") (I just want to smack those parents who have that result. Not very charitable, but honest.) But what we have seen is, for lack of a better way to describe it, that his brain synapses seem to be firing better. More connections, more requests, more intentional eye contact (i.e. "Can I?" expression that he has) and interestingly enough, he seems at times to be more emotional. Today was a great example.
He has overly sensitive ears, so things like disposals in the kitchen sink really hurt his ears and scare him. When I need to use it, I give him fair warning ("Okay T, loud noise") and he'll cover his ears and say "Turn it off!" when I do turn it on. But usually, that's that – it's not any big dramatic thing. Not today. We went through the usual routine, and after I turned it off, he looked at me, the lower lip started going, tears welled up in his eyes, and he started crying. And here's one heartbreaking aspect of T's autism – you can't console him. He doesn't want to be held – it just makes things worse…usually. So, I knelt down in front of him, took him by the hips so as not to overwhelm him, and said "Oh T, I'm so sorry. I didn't mean to scare you." He backed up a bit and hit the top of my head with his hands (it was gentle, but nonetheless a definite "you pissed me off" hit.) Side note: I don't outwardly condone his new little bursts of temper when he hits things in reaction to being angry or thwarted, but inwardly, I'm cheering him on. It's SO neurotypical! You go kid!!!) So I didn't react – a skill I've learned from his Verbal Behavior therapy – and then was completely surprised by his next action: he put his arms around my neck and HUGGED me. I put him on my knee and hugged him right back, and there we stayed for a full two minutes or so – hugging each other. He continued to cry on my shoulder…again…so neurotypical…and I held him and took it all in. His sobs calmed after a bit, but he was still holding on to me so I kept on hugging him, and didn't ever want to let go. My son was consoled by my embrace.
A God Moment.
When he was calm, he pulled away gently and said "Tissue" so he could wipe his nose. He did, and then went on his way.
We may never know if these developments are due to the chelation or just normal human development. What matters is that it's happening. I'll take it either way.
Saturday, September 13, 2008
Yesterday, we took T to a Parents Night Out program at our local therapy clinic. Trained volunteers hang out with our kiddos at the clinic on a Friday night while the parents get to have a few hours to themselves. (We took the opportunity to see the new Coen brothers film "Burn After Reading" – hilarious to see George Clooney and Brad Pitt doing their goofy thing that they do really, really well. Definite thumbs up!) When we came back to pick up Thomas, he was happily sitting at a little table, munching on pretzel sticks with a big cup of juice nearby, watching the move "Cars". Very cute. But the amazing thing this particular evening was what happened next: we told him it was time to go to the car & go home, so we started toward the elevator. He stopped, looked right at us, and said "Juice." We had just tossed some leftover juice, so we were a little surprised, thinking that he was requesting juice. We asked him if he wanted some juice, and he continued the eye contact. He then started walking toward the therapy gym quite intently, then seeing us following him, took off running. We followed, entertained and curious, thinking that perhaps there were juice boxes in the gym or something. Oh no. He opened the door to the gym, walked in, picked up the empty cup that he brought with him from home, and brought it out with him. He remembered that he brought his cup with him, had left it in the gym, and went back to get it.
Can we talk about how many cognitive steps that had to take? 1) Remember that you brought a cup from home. 2) Know that you should bring it home with you. 3) Look parents in the eye. 4) Say "juice". 5) Remember where you left it. 6) Look at parents again to get them to follow you. 7) Run to where you left it. 8) Open door to gym by oneself. 9) Find cup. 10) Carry back to car.
AWESOME night!!! Way to go, little man.
Saturday, September 06, 2008
This will be my last post on this subject. This woman's candidacy has been on my mind so much since her speech Wednesday night. She gave a terrific speech, and I say that despite my own political leanings. Part of me was so happy to see Trig up there with the rest of her family. A beautiful and much doted-over DS baby for the whole world to see – not hidden from sight, but included and rejoiced over. And when she promised to be a friend and advocate for special needs families in Washington, and the whole Republican house roared with approval, I was quite moved, I admit. (I hope they all will roar with approval when appropriations bills come through with requests for increased funds for research, providing wider opportunities for affordable health care & services, passing federal mandates for insurance coverage for thes kiddos, etc.) And yet, there is a "But…" to this. I've thought about what troubles me, and I have finally put my finger on it. And I will say that it is probably the first time that I will openly judge another person's actions ( I feel I have earned that right because I have walked in the steps she's about to tread), and this opinion may be, in the opinion of others, politically incorrect. That's okay with me. It is what I believe, and that's that.
I would never have made the same decision she did to accept the nomination for the Vice Presidency at his time in Trig's life. Period. I cannot understand a mother who knowingly chooses career over caring for her 4 month old special needs child herself. A child that she carried for nine months, a child who most surely will need major heart surgery in the coming months or years. A child who will require hours upon hours of therapies, day after day, week after week, month after month, year after year. A child whom she will worry about, cry over, rejoice over every milestone met no matter how delayed, and to dedicate her life to. I know, because I am a special needs mom. And I also know because I speak with other special needs moms every day at my place of employment: moms who are fighting for every last little right to attend public school appropriately, to find health care that will cover the child's condition and keeping that policy, for services & therapies, for a place in society. She feels she can do it all, probably because she & her husband are already raising four other children. BUT…this is unchartered territory for her and her husband. Yes, they've had 4 other children, and they appear to be wonderful, healthy children, and I am so thankful for Trig that he's been born into a family with lots of siblings who surely will be changed by his presence in their lives, and they will be the better for it. (How cute was the moment during mommy's speech when the young sister, holding him on her little lap, licked her hand and smoothed out his hair? Priceless.) So terrific – he's got siblings to surround & love him. But back to her decision: I do not support her decision to accept the VP nomination at this time.
Trig is 4 months old. I so completely applaud her for choosing to see the pregnancy through. But she & her husband have only begun this journey. I'm sure Trig is different already from her other four babies at this time, but the differences will only become more and more dramatic as the coming months progress. They may have been told what to expect, but nothing fully prepares you for what life is like with a special needs child. You have to live it to understand the time commitment, the physical and especially the emotional exhaustion, and at the same time, the immeasurable joy they will feel at progress made. She was absolutely right when she said that special needs children provoke a special kind of love. Absolutely. And she & her husband are only 4 months into it. Imagine the special kind of love when you are a year into it, two years, three years…and you've put in the time and sweat and tears. Mama Bear (or should I say Pit Bull?) protection and desperation comes with it. Sacrifice. There is always sacrifice on the family's part when there is a special needs child. There is joy and sorrow in that. I don't see sacrifice here. I see choosing career advancement over personally investing in Trig's life.
Rob asked me understandable questions: "What if this was a man with a 4 month old?" Okay, this is where some may think I'm sexist, and this may be the first and only opinion I have that may be construed as sexist or politically incorrect. Mothers and fathers, women and men, are DIFFERENT, folks. That's not to say that sometimes the typical gender roles switch and it works successfully and to everyone's advantage. But I would NOT have had as much of a problem with a father of a 4 month old choosing to accept the offer of VP running mate. Note that I italicized "as much." I would have had a problem with it, but not as much as I do with a mother agreeing to it. This is absolutely informed by my personal experience of having been there and done that. I will comment more on that when I get to Rob's next question:
"Are you saying that a man can't raise a child?" I believe firmly that men can -and do - brilliant work raising children, without a doubt. My opinion: personally, I just wouldn't have had anyone else do it. A typical child would have been one thing, but a special needs child is quite another. As Ms. Palin said, special needs children invoke a special kind of love. Again, she is right. Here's my take on it: I carried Thomas for 9 months, bore him, and when the challenges surfaced, my laser beam focus became helping this child. It was my responsibility, my new calling in life - given this wonderful and challenged boy - to do right by him and get him everything he needed to progress and succeed - me personally. I could not have gone off to a full time job to let someone, even my beloved Rob, do the primary care giving. This was my boy and I was his mommy and nothing could tear me away from directly helping him and overseeing every last minute. It would have taken many, many Pit Bulls With Lipstick to tear me away from him. This is why I wouldn't have had as much of a problem if it had been a father of a special needs 4 month old. It is simply inconceivable to me that she would knowingly make this career-advancing choice now - to be away from Trig as he faces almost certain surgeries and definite years of therapies and treatments. I wish that this offer could have come for her in 4 years or 8 years. Then I would not have had a problem with it. How cool would it be to have a special needs child so close to the White House? But these first months and years are critical, and she is choosing the Vice Presidency over personally tending to her son. I cannot and will not approve of this choice on her part. I say this regardless of political party affilication, qualifications, and opinions on hot-button topics. It's my opinion, period, even if it will piss people off.
Friday, September 05, 2008
Palin: "To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters. I pledge to you that if we are elected, you will have a friend and advocate in the White House."
Sarah Palin might have changed her mind on this one recently. However, a comment here notes that Palin actually slashed funding for schools for special needs kids by 62%. Budgets: FY 2007 (pre-Palin), 2008, 2009 (all pdfs).
Here is the link to the whole article. http://www.cbsnews.com/stories/2008/09/04/politics/animal/main4414049.shtml
Maybe now that she has a 4 month old with Down Syndrome, she's changed her mind on that. But wouldn't that be flip-flopping?
Thursday, September 04, 2008
Saturday, August 23, 2008
Apparently, T is a heart-throb at his school! The divine Brett, one of the therapists that work with T every day, came out to my car one recent morning with a big smile on his face. He always shares great stories with me about cool things T does at school. He's a dad of special needs kiddos himself, so he knows how important it is to hear these fun stories! (We hear so much about what they can't do, how they tantrumed/screamed/stimmed too much, etc…) Anyway, he reported that one of the girls at the school has taken quite a liking to T. So much so that she took him by both sides of his face and kissed him on either cheek over and over again! What makes it even more fun: apparently, he was eating it up – laughing and squirming and smiling through it all!
This warms my heart so much. A little girl has a crush on my boy! I remember having my little crushes in elementary school, too. And now, my little boy is the object of another little girl's affection!
Friday, August 22, 2008
It has happened. The day for which I have waited for years, the one that I dreamed would come and thought never would. T has pooped in the toilet – the whole job, beginning to end!!! One flushable Cottonelle Wipe, and we were done. Not only did he poop in the toilet today, but Tuesday, Wednesday and Thursday, too. 4 DAYS IN A ROW!!! Okay, I still have to catch him Assuming The Position, but he knows what to do now, and tonight after dinner he TOLD me he had to go. Yes, he had already peed in his tighty whities, but he promptly pooped in the toilet for the second time today!!!
I think back to all those hours I have spent sitting on the bathroom floor – of our house in Small College Town and here. Back to the days when I couldn't even get him to step foot into the bathroom because he knew I was going to try to get him to sit on the toilet, and the mere thought of that was too aversive for him. How long it took for him to be willing to sit on the toilet, even for a few seconds. Then the endless stream of days, weeks, months and even years (yes, YEARS) that I would catch him about to poop, take him to the bathroom, sit him on the toilet, watch DVDs, sing, talk, read books about potty training…and nothing would come…until after I had given up and he pooped in his Pull Up 10 minutes later when I wasn't watching. I have felt so incredibly defeated and hopeless…until now. All the hard work has FINALLY paid off.
Dare I say it? I think he's got it.
And you know what? If he can learn to poop on the toilet, then he can learn to ride a bike. He could learn how to write his name. He could learn how to have a conversation. He could learn to read. To have a friend. To watch a TV show with a plot & follow the story. To use a computer. To have a job. It may be in his own time, and it may take the sweat & tears of his parents & countless teachers & therapists, but he'll do it, by God. He'll do it.
All this from poop. But I'm feeling really good today.
Saturday, August 09, 2008
Rob & I took T to the State Fair today. It's a Saturday, so it promised to be a crowded day - but the weather promised to be seasonably cool – only 80 degrees – and with family in town, we decided to give it a whirl. And what a great day we had! The biggest news was that he actually rode some carnival rides today, and had a terrific time! I think I've found my roller coaster buddy. He rode the carousel, smiling all the way, then a kiddie roller coaster, LAUGHING all the way! He rode the roller coaster twice – once with me, once with Rob. On to little cars that go around in a circle under a huge colorful umbrella, and lastly down a mega slide on a burlap bag. Okay, there was a little screaming when I put him on my lap to go down this huge thing, but the shrieks of protest immediately turned to laughter when sliding down. Once we were down, he even stopped at the entrance to the slide, looked back at me with that "I want this" look…and I had to say no because we were out of tickets. But even then, there was just a little yelp in protest, but we were off again. He was in a good mood all day, despite the crowds and stimulation. And we had another really, really nice moment: at the duck pond game (where everyone wins) I approached the worker without T, said that I had an autistic kiddo with me and just wanted to know how it worked and what we needed to do to win a big ball. Just two small plastic ducks would earn the coveted ball. So a few minutes later, I brought him over and he pulled two ducks out, earning him the ball, but the worker said "Two smalls allow him to choose a ball, but he gets to choose a large prize." My heart just melted with thanks. There really are these wonderful moments when perfect strangers show an unexpected act of kindness – they just take my breath away. Rob & I thanked her profusely, but T really did just want the ball, and that's what he chose. We walked away from there so thankful and touched. We happily played with the new ball while waiting for cousins to finish their rides.
On a completely different note: we have now tried a deep fried Snickers bar. It tastes like, well, a Snickers bar in a doughnut. Ugh. Complete decadence – I'm glad I can say I've tried it, and I don't need to have one again!
Tuesday, July 29, 2008
It's a hot summer afternoon, and he loves to play in spraying water toys in the backyard. But also in our backyard is our air conditioning unit. To say that he loves it does not even begin to describe the relationship he has with AC units. He cannot stay away from them. If he sees one, he runs to it, and if kept from doing so, we are treated to the Eagle Shriek, as we call it: a high pitched, VERY loud short shriek which, when experienced at point blank range in one's ear can render it shut down for several minutes, and if experienced in a shopping mall or grocery can make innocent bystanders jump at the least - or shriek a little themselves - and give him or me some oh-so-understanding blistering comment, which I'm very good at ignoring. Anyway, I brought out some of his new water toys that he got for his birthday last weekend. He even chose which one he wanted first. Then, he heard the AC unit on. He ran to it - no surprise. But even after I had set up the water-spinning penguin, he would not be moved. So darn it, I took him by the hand and walked him toward the new toy. I mean, it spins, there is water...what's there not to like for an autistic kiddo? But no, he fought me, gave the Eagle Shriek several times, and ran back to the AC unit. And I, in a not-so-proud moment, said, "Okay fine, I'll see you later," and went inside. He's outside with his beloved AC unit, grunting and stimming away over the spinning fan, and I'm inside licking my "wounds" and feeling sad.
I really need to be better than this - I know he's not rejecting me - he just is so obsessed by the AC unit that his mind can't get beyond it. Kind of like in Finding Nemo - there is a fish in the dentist's tank that loves bubbles, and he just waits by the treasure chest for the bubbles to come and when they do, he grabs the chest and says "bubbles, bubbles, bubbles!" despite everything else around him. My heart breaks at times like this, and as hard as I try to always have my Strong Mommy of Autistic Child guard up, there are times that my heart bursts through the guard and I just want to be able to play with my son and have ME be more interesting than the fucking AC unit.
Friday, July 25, 2008
This topic, along with our taking him off special diets, has prompted so many well-intentioned suggestions, monologues and lectures directed at me that I am no longer entirely patient or rational when speaking about it. Have you tried this? Yes. How about this? Yes. What about...yes, yes, yes. I've tried it and it's been 7 years and if it were that easy I WOULD HAVE DONE IT BY NOW. And he'd be potty trained and I wouldn't have lost probably the equivalent of 3 months' time of my life sitting on the floor of the bathroom trying to encourage him to poop. Think I haven't been trying to potty train him since he was three? Every poopy diaper is a reminder of 1) just how delayed he is and 2) how much of a failure I feel that I am in this area.
See, not too patient & rational anymore. Of course I'm not a failure. But he is delayed. Remember: functioning at about a 2 1/2 year age equivalency.
But back to the good news!!!! Monday, I once again caught him just as he was about to push. I smelled a few "warning shots", so with my patience in tow, I took him to the bathroom. Those faint of heart & with delicate sensibilities, stop reading. He sat down, and after a moment, I could see that the tiniest bit of poop had emerged. I praised him, patted & massaged his legs, encouraged him, and waited, and waited, and watched. Nothing. Several minutes passed. I'm thinking "For crying out loud kid, I can SEE you have to go! For the love of God, DO IT!" So maybe this was divine intervention, but I started singing vocal warm-ups to him. He thinks arpeggios are hilarious, so I sang them. I sat on the floor of our half bathroom singing arpeggios and made him laugh and smile and laugh some more, and then...quite to his and my surprize...PLOP, a poop hit the water. It was one of the most beautiful sights ever. And the addus bonus, he did it again the next day. Haven't caught him since Tuesday, but I will - and he'll get the hang of it.
I have to laugh when I think of this story, though. I mean, what a truly bizarre story - my singing my operatic warm-ups in the bathroom while my son takes his first dump in the toilet. But he did it, by God, and I'll sing in the bathroom everyday for the rest of my life if it will help him poop in the toilet.
Saturday, July 05, 2008
A momentous night! We were all enjoying our dinner out on the porch. T was happily eating his dinner (which has gotten considerably easier lately since he's been willing to try new foods – amazing) when he quite quickly and purposefully stood up. He looked at us both, then at Rob, and even moved toward him and mumbled something. It was another one of these glimpses of T trying to really communicate with us, which is happening more often and is very cool. Rob asked him if he wanted something, and I asked him if he needed to go to the potty. He said "No potty", but went inside. Rob & I marveled at the attempt to talk, wished we understood his words better, but stayed on the porch and continued to enjoy the unusually temperate early July temperatures. A few moments later, we heard the distinct sound of what we thought was water running – not unusual for T, since he really likes to play in the water. But both Rob & I looked quizzically at each other, went inside, and discovered our boy standing in front of the toilet, peeing into it without having had any assistance whatsoever!
YAY!!! All by himself. Okay, this meant that he 1) felt that he had to go (huge), 2) knew that he had another option other than peeing in his Pull Up or underwear (even huge-er), 3) wanted and tried to tell us (awesome), 4) walked into the house and went to the bathroom, 5) pulled down his pants, 6) pulled down his Pull Up, 7) lifted the toilet seat and lid, and 8) PEED in the toilet!!!! Oh my God, he did it!!! This means that he CAN, he CAN, he CAN DO THIS!!! I know he won't have this all down tomorrow – and we still have to work on the pooping – but holy crap, this is such a big deal. He did this on his own. By God, he's going to be able to be potty trained. He will, he will be, he will do it.
I am so friggin' happy. I'm so proud of him!!!
And if that wasn't enough, later on, I was walking by him and said that I'd be right back – that I needed to go wash some more dishes (which still need to be done, by the way.) He said "No downstairs", reached and gently pulled me by the elbow and quietly said "1-2-3." He was asking me to play our little game where I count to three and throw him on the bed. He ASKED me to play with him! Our little guy – he amazes me and inspires me and gives me such hope for his future. I am very happy tonight.
Wednesday, June 25, 2008
I've gotten this question with much greater frequency lately. The general public seems to be increasingly aware that families with autistic children have some serious concerns about vaccines, and I'm finding that people are much more curious about the subject – enough so that people I've just met are willing to ask me what I think. Even friends that we've known for a long time have summoned the courage to ask me. So what do I think about vaccines?
The community of folks who believe that vaccines play a role in the causation of autism are (as many small, vocal groups raging against The Machine are) depicted as crazy, grieving people who are simply looking for something to blame their child's condition on. You've seen the news clips, I'm sure – followed up by Important Experts in white coats explaining condescendingly that research has shown that vaccines do not cause autism. Okay. True.
But that's not what this growing community of physicians, psychologists, therapists and parents are saying. No one's saying that vaccines are the sole cause of autism. If they were, we'd have figured that out long ago. Here's what these "crazy" people are saying: 1) there is a genetic predisposition or sensitivity. 2) There is a toxic event. 3) There is over-use of antibiotics. So in some children, 1+2+3=autism.
For the record, I'm one of these "crazy people." But I'm not crazy. We're right. Continued research will prove it. And there is going to be a huge cost to make this right.
Rob & I can look at our combined family histories and see that the genetic propensity was there. No one had autism, but there are related disorders on both sides of the family. Check off box #1 for "Genetic predisposition."
Okay, on to box #2: toxic event. I was concerned enough after T's diagnosis that I dove into some serious online research. I had T's vaccine schedule on the desk next to me, complete with every vaccine's manufacturer, lot number and date received. I found websites of law firms who were pursuing class action lawsuits, and checked their list of vaccines containing thimerosal. Thimerosal was taken out of vaccines in the spring of 2001 where we were living, and that was just a few months before T was born. None of T's vaccines were on their lists. T also has never shown any signs of regression – a huge heartbreaking condition that is being pushed aside in all this research that is being done now, saying that vaccines do not cause autism. In any case, T never regressed, and newly armed with the information that none of his vaccines were targeted for class action lawsuits, I heaved a sigh of relief – but I haven't fully exhaled yet.
I'm not sure that I ever will. Why? Because something is going on here. Not just with our boy, but with hundreds of thousands of boys and girls. Seemingly healthy, typically developing children go in for their shots and come out FOREVER CHANGED. How can doctors and researchers look a parent in the eye who took their child in for a vaccine and two days later had a child who wasn't talking anymore and had completely withdrawn from the world and say to this frantic parent that it WASN'T the vaccine that did it? HOW? HOW? HOW? "Oh, it's all anecdotal. Nothing's been proven yet." Well, all you friggin' Einsteins out there, isn't EVERYTHING anecdotal until proven??? How many kids will it take until we finally say "Okay, there is no such thing as a genetic epidemic. Something must be going on, and it has to be in the environment somewhere." I am getting so sick of hearing spokespeople for vaccine manufacturers and chemical companies saying that their products are safe because they've never been proven to be harmful. Again you friggin' Einsteins out there: what about proving that they are SAFE???
But I digress and I'm getting a little hot under the collar. At least I can say, with reasonable certainty, that vaccines didn't cause T's autism. But there are two events that happened during pregnancy that will forever have a question mark above them for me: the Rhogam shot and the flu vaccine I received, both under doctor's orders. Both contained thimerosal. Was this the toxic event that tipped the scale for him? Perhaps this is why we never saw regression. The deed was done in utero and set in motion. No regression, just delayed – just a little at first, then more by 12 months, even more at 15 months, and we were looking at autism by the next year. And please, no replies urging me not to blame myself. I truly don't. I'll never know if those injections had anything to do with it. Maybe they didn't. The toxic event could also simply be the toxic soup we live in. And if you don't think we live in toxic soup, well, there are tens of thousands of new chemicals that have been created since WWII. A mere sliver of that number has ever been tested for their safety. Read those last two sentences again. That means that there are thousands of chemicals out there that have never been tested for safety, and they are put on our crops, in our food, in our clothing, in our cleaners, in our air…hello, toxic soup. I think box #2 can be checked as well.
Box #3: over-use of antibiotics. T had a string of several ear infections when he was two that all were treated with antibiotics – one right after the other. I swear he was on several rounds antibiotics in about a three month period of time. And throughout his childhood, we never met an ear infection that didn't meet an antibiotic. Check that box, too.
So, do I think vaccines cause autism? No. But I do think that they are proving not to be safe for increasing numbers of children, and I'm sick of vaccine manufacturers and the AMA trying to prove they are right instead of looking at the numbers and fixing the damn things. Don't give so many at the same time. Don't give them so early. Let the immune system develop before slamming these teeny bodies with 24 shots in the first two years. And get the shit – er – chemicals OUT of the vaccines.
I fully realize what is at stake here. If vaccines or chemicals in the environment are proven to be a major part of the autism equation, then all these major players will be culpable for causing this epidemic. And they will never concede that.
In the meantime, T is who he is, and he is a true blessing to us and to everyone in his world. A sweeter, happier soul you may never meet.
And if we have another, we're doing a very different vaccine schedule. You can count on that.
We recently had his 3 year re-evaluation conference with his school district. It's a wonderful school district, and we've never had to go to battle with them for anything. But one subject matter was not easy to discuss. For this re-evaluation, a developmental profile was completed. His age equivalencies for different areas (such as physical, social-emotional, cognitive, etc) range from 1 year 11 months to 2 years 11 months.
He's 6 years 11 months old.
Wednesday, June 18, 2008
Right before bedtime, I listened to a voice mail from Rob on speakerphone. T heard his daddy's voice from across the kitchen, walked over to the phone and said "Daddy." I said that it was, and he put his ear up to the phone, listened, and said "Daddy?" again. Wow. I explained that this was just a recording, but asked him if he wanted me to call him. Not getting a response, I did anyway. We got Rob's voicemail, which T listened to intently, and while he heard his daddy's voice, kept saying "Daddy. Daddy." Finally the beep was heard, and he said very quietly again, "Daddy" and then was quiet. I told him that we were leaving a message for Daddy, that we wouldn't hear his voice right now, but that he would hear our voices soon. Rob just came home a few minutes ago and said that he's never deleting that message. The first thing he heard was T's voice saying his name. Almost unbelievable. When we've been waiting as long as we have to hear purposeful communication, especially our names, you almost can't believe it when it happens.
What an exciting night! What does this little guy have in store for us next? I can't wait.
For months and months now, the bedtime story has been Panda Bear, Panda Bear, What Do You See? By Bill Martin, Jr., pictures by Eric Carle. Rob & I know this title and the entire book by heart by now, as truly this is the ONLY book we've been allowed to read. Believe me, we've suggested other previously favorite books and even a few new ones – only to be rebuffed. So Panda Bear, Panda Bear it has been. You must have guessed by now that tonight there was a change – and indeed there was. Rob usually does the bedtime routine, but tonight I took over the duties temporarily. And when I told him to pick a book, instead of going right for Panda Bear, he paused a moment, considered his options, and then handed me Panda Bear. No great surprise. But when I was done reading it, he rolled over on his side, looked at his little bookstand next to his bed, looked at me with those beautiful brown eyes, and tried to say something. He tried again. "Brown Bear." "Brown Bear, Brown Bear, What Do You See? Is that what you want?", I asked him. And he settled back into bed and waited for me to begin. And so our reading evening began. When Brown Bear was done, he looked at the bookshelf again. "What about Freight Train?" I asked. Again, he settled back and waited for me to start. Freight Train was followed by Dr. Seuss' ABC, The Snowy Day, and Guess How Much I Love You. Yawning had begun by the end of this book, so our reading time ended. But I'm still sitting here in disbelief and joy. I read to him for about 30 minutes and he was listening and following along.
Friday, May 16, 2008
I am a working woman again. Life has gotten much busier than it was last fall, and the past few months have absolutely flown by. And yet, as busy as I am, I am feeling so comfortable in my skin again. I have purpose beyond our little haven here at home, and I am making a difference in the lives of other special needs families. It feels really, really good. And it feels good to say that!
In fact, when my friends ask me how the job is going, it's almost uncomfortable talking about how friggin' happy I am in this job. I don't know why it makes me feel uncomfortable – I guess it may be because I'm so used to talking about how rough things are that being in this good spot is so foreign to me. I drop T off at his full-time Verbal Behavior school (which is covered by insurance), go to my job, work with terrific colleagues (all of whom are mommies of special needs kiddos like me), talk with families who need help, pick up T in the afternoon, and have time to make dinner and hang out with him until it's time for bed. It doesn't leave a lot of time for extras, but I'm spending my time so incredibly well that even though I'm tired, I'm happy.
Now, some of the stories these families tell me are heart-wrenching. Some stories are incredibly, intensely frustrating. Some end up having some really happy endings, and some end up simply just being better situations than they were. Regardless, each family is so thankful for the help. Most days, I leave the office wanting to hug both T and Rob for being as wonderful as they are. This job has been eye-opening, certainly. I've told Rob that I wish my job didn't have to exist, but since it is seriously needed, I don't want to be doing anything else with my time while T is in school. I feel very, very blessed.
Mother's Day morning 2008 brought with it one of the best spontaneous gifts I've gotten yet. I shuffled into the kitchen, having slept in (how glorious) because Rob got up with T and made breakfast. T looked at me, and said – unprompted – "Hi Mama."
6 years. 6 YEARS I've waited for these moments. I'm so stinkin' proud of him.
Awesome! He's my little talking man.
Thursday, April 03, 2008
Today, T went to his very first movie! This was such a cool event. A local autism support group and therapy/support clinic rented a movie theater for the afternoon and sponsored a showing of Alvin and The Chipmunks. What did they do to make it friendly for T and the 25 other kiddos there? They never dimmed the lights and the sound was turned down to a comfortable level – nothing to overwhelm our sensory-overloaded little guys.
Previously when I tried to take T to a puppet show in an auditorium and the lights went down and the other children started applauding and cheering, he FREAKED OUT. Screaming, crying, throwing himself around – I literally had to hoist him up by the waist under my arm and haul him out. Poor little guy. I haven't really tried auditoriums since then, and have never – until today – considered going to a movie. Crowds are really tough. When going to fun community events with typical kids, we've had our share of glares and even a few unsolicited corrections from other mommies who were perturbed by T's giggling, pacing and echolalia (repeating words or phrases he's heard)– even when he's perfectly happy. So we've just made sure that wherever we take him, he has a chance in you-know-where of having a successful outing. But back to the movie!!!
He was SO GOOD. He went right into the slightly darkened theater with me, no problem. This theater is also a grill, so you sit at little tables and order food & drinks. Popcorn and drinks were included in the $5 admission, as well as free gluten-free and casein-free snacks. He sat right down at a table with me, nibbled on a GFCF cookie, enjoyed the popcorn, grimaced at the full-strength fruit punch, and didn't make a thing over the movie starting on the big screen. He really seemed to be just fine – no agitation or extra stimming – just sat and kept an eye on the screen. I even saw a few smiles after a while. And I just sat there, thinking over and over, "I'm at a movie theater watching a children's movie with my son." Wonder of wonders. About 75 minutes into the movie, he stood up and looked at me as if he were saying "Okay, I'm ready to go now", so I let him pace around and we were able to stay until the end of the movie.
Many other people there as well. I was struck by the age of some of the attendees – several well into their teen years. I wondered if they minded going to a children's movie when most teens would be so embarrassed to do so…but they happily ate their cut-up chicken tenders and French fries while watching the movie and seemed to enjoy it. How often have they had this opportunity? There were also several kids T's age – some following the story and laughing at the funny parts, others pacing, pacing, others vocalizing unhappily – but there we all were, in a movie theater, creating our own version of normal and our own version of reality, and it was a beautiful thing.
I love our new city.
Tuesday, April 01, 2008
One of the areas that the verbal behavior school is working on currently is teaching T to answer fill-in-the-blank questions. For example: A dog says: "woof!" A frog says: "ribbit!" What do you use to wash your hands? "Soap." This is a step beyond mere identification of flashcards or "live" items. Last week's most memorable report from this morning therapist was his response to a newer question. Here it goes:
Therapist: You eat with a…
That's my boy!!!
Sunday, March 02, 2008
T has been on a shoe strike for over a year now. He decided one day that he didn’t want to wear shoes with laces, or shoes that were white, or anything different from his two Chosen Shoe types: Crocs and LL Bean Comfort Mocs. We are currently on the third pair of brown Comfort Mocs in successively larger sizes. This past summer, he diverged a bit to wear some Merrill sandals with a covered toe – something I worked hard on because he was going to day camp and needed to be wearing something more sturdy than Crocs. We even had some trouble this winter convincing him to try winter Crocs – the ones with the fleece lining! Three pairs of shoes have gone back to the Stride Rite store – three really cool pairs of shoes, I might add – which were absolutely rejected. Thank goodness for 30 day return policies.
He has started attending a motor activity clinic downtown on Saturday mornings, which is run by the university where Rob works. He is paired up with PT or OT undergraduate student and spends two hours of one-on-one time with this person. 45 minutes in the gym, 45 minutes in the pool. Awesome! I decided that now was the time to get him back in athletic shoes, come hell or high water.
So, here’s what I had to do: out came the tub of mini chocolate chip cookies and the pair of shoes. I showed him the shoes, which he shoved back toward me while saying “NO SHOES.” I showed him the cookies. Got him to sit down and hence the game began. Any time he even put just his toes in a shoe, he got ½ a cookie. (The cookies are the size of a quarter, so no lectures on sugar, please.) Then I upped the ante: to get a cookie, he needed to put his foot in, but not his heel yet. Once that was a success, then the heel had to go in. This was the hardest part, and the point at which I got kicked accidentally in the face. I’ve learned from experience that I cannot react when something like that happens, so on we went as if nothing happened – no permanent damage done. Then I counted “One, two…” and he said “Three!” and on went the shoe, just for just a second. Cookie earned. After several rounds of this, then it had to stay on for 3 seconds. Another cookie earned. After several rounds of this, Rob stepped in and we put both shoes on for a second. Cookie. Both shoes on for several seconds. Cookie. And then it was time for bed.
I won't minimize the patience this took. There were several times I wanted to just shove that shoe on his foot and force him to wear it - and I was close several times. But in those heated moments, the Still Small Voice said that if I do that, then he'll be even more traumatized by the shoes and would never wear them. So I took a deep breath (and a cookie or two myself), and went on.
The good news: the next day, he put on those athletic shoes (after a minor bout of prostesting.) Today, when I went to put on his brown shoes, he said “No brown shoes” and put on the athletic shoes! So okay, they didn’t match his Sunday outfit, but who cares. He’s wearing different shoes!
Monday, February 25, 2008
I haven’t written a post in a while – mostly because T is doing really well and we’re in a good space. Life is in a good routine, and he’s a happy little guy. I think back over the year we’ve had, where we were a year ago with teachers quitting, therapists changing, diets & diarrhea, and I am filled with relief and thanks that it is behind us.
So I’ve had time to think and think and think. The question is: do I want to have another child?
This is such a personal subject, but it is something I’ll share at least part of here. It is a question so many parents in our situation face and struggle with, and I am really struggling. I haven’t come to a final decision – and ultimately of course the decision will be made with Rob. But a big part of our decision rests on whether or not I want to have another. Not “can I?” or “should I?”, but “do I want to?”
Can I? Yes, I think it is still physically possible. Should I? I really hate shoulds. You should have just seen me as I wrote the words “Should I”…I literally rolled my eyes.
Truth be told, I’m really not sure that I want to. And that makes me sad to write that, but it feels good to be honest. I always thought that I’d have at a minimum 2, probably 3 and possibly 4 children, and Rob was on board with this. Now here we are with one, and there are a hell of a lot of reasons to stay where we are.
I hate making decisions based on fear, and I admit that part of my thinking is based on it.
But am I then saying that I only want another if it is a perfect, typical child? You don’t have children so that you can have perfect little kids. You have children because you want to be a parent, to share love with another little person and watch them grow, to rejoice in their accomplishments and help them grow to all they can be, to share this with your partner because you have something to give – and none of that says anything about being guaranteed a typically developing child. There are no guarantees, period.
And there is so damn much at stake. T’s future, my sanity, Rob’s sanity, our financial future – if we have another special needs child. And I’m not getting any younger. Not too old yet, but pushing 40. The longer I wait, the more chances of complications.
Knowing what I do about autism, I've seen just how bad it can be. We are blessed with an angel child, and I know we've got it easy compared with other families faced with this diagnosis. The more research we do, the more is published by researchers, the more it looks like genetics play a huge role in the causation of autism. This could happen again, and it could be much, much worse.
Then again, there are plenty of autistic kiddos with typical siblings. I've seen them, too...dragged along to endless therapy sessions & bored to tears, needs pushed aside because the autistic sibling has more pressing needs, acting out for attention or simply disappearing and not asking for anything. They know that their brother or sister will someday be their responsibility.
Somehow, some of these children end up being the most wonderful, sympathetic young people I've ever met.
I just feel like I’m talking and thinking in circles. Part of me – forgive me – wishes that the decision could be made for us. A doctor tells us that more children aren’t possible. I couldn’t sustain the pregnancy, for example.
One recent thinking in circles session ended with a realization: there is no right or wrong answer to this question. Whatever Rob & I decide will be right for us. Either decision would be courageous, and either decision would be foolish.
This is part of the mission statement of my new employer: We are the place for families and professionals to go to “ASK” questions about children with special needs and to access information and resources about a variety of topics such as health insurance, special education, community resources and medical homes.
I think the thing that is most amazing to me about this new job is how it came to be. I hatched this idea a few months ago, talked to some people, they referred me to others, and here I am: tomorrow I start three days of training and I am part of the work force again!
I prayed and prayed about this. Once I had my first interview and things went really well, I did my life long practice of thinking "Oh geez, life is pretty nice right now...do I really want this change?" All my free time while T is in school will be gone, no more leisurely morning & afternoon hours to charge myself up for the busy after school & evenings. But I really had an intense prayer time a few days ago (rare for me), saying to God that whatever is in store with this job, I'm in. If I got the job, then I'm along for the ride - helping families get the help they need, helping our family in turn by learning all that I will in training and on the job, and starting a new journey and possibly a new career path. But if I didn't get the job, then it wasn't meant to be and something else was out there. And for once, I truly released this situation to God and felt comfortable and at peace with whatever happened. So when the phone call came, I was excited, took the job, and said "Okay, God, here we go."
Adding to the employment news, I've gotten two singing gigs here locally! Wow! It feels so damn good to sing again. I really have had to put most of my work & career life completely aside these past years, especially since T's diagnosis. I didn't even have the slightest desire to sing. It's not like I made a conscious decision not to sing - I just didn't. But since we've moved here, things are happening for me. I sang at a church back in November, and I loved it. It's looking like I can take this job and also be doing some singing around town too. How great would that be? This feels so exciting and promising, and a little scary, too.
I've enjoyed this time I've had since he has been in school all day, but have also felt an urge to start earning some money again, and more importantly, do something important & useful with my time. I have a lot of knowledge now, and I'm a good communicator, and I also seem to have "Tell me" written all over my face because people talk to me. And its not like I'm working full time - this is the beautiful thing - I'll be working only while Thomas is in school! And the office is less than a 10 minute drive door to door. I could even drive home for lunch, put some laundry in, or stop at the grocery, for crying out loud. AND...I'm helping families of special needs children get the help they need.
And when I get nervous about this new adventure, I remind myself that I do this every time I'm facing a change. I used to be sad before my birthdays as a child because I'd never be 10 again. Do you think I fear change?
Saturday, January 26, 2008
This is an expansion of something we've heard in the mornings recently. On our way to school every morning this week, he's said "See Brett" (Brett is his morning therapist.) There was a morning a few weeks ago that Brett was not there, so another therapist came out to the car to get T. To this, T responded "I want Brett." And apparently, he did the same thing for his afternoon therapist when she wasn't there, and said to the substitute "I want Kimberly."
We've been working hard on him saying "Hi Brett" and "Bye Mama" when we get there, and that is coming along nicely but slowly.
2-3 word sentences. So glorious!!!
Friday, January 25, 2008
Okay, so I think it is reasonable to assume that he was wanting our company - that he was bored and lonely after all. I thought kids with autism weren't supposed to be social, that they preferred to be alone and were completely self-absorbed in their own world. NOT MY KID!!! He does have those tendencies some of the time, but clearly not all the time.
I just love this little guy.
Tuesday, January 15, 2008
I try not to dwell on the future too much. I used to worry incessantly and freak out about T's future. Somewhere along the way, I had a lightbulb moment (or perhaps one of my God Moments). As clear as day, the realization sunk in that the only way to take care of T's future is to do my absolute best for him today, tomorrow and next week. There's no way to know what's in store, no road map for us on this journey. But if we focus on the present - what therapies does he need, is he getting them, is this schooling situation working for him, is he making progress, etc., then the future will take care of itself. We've set up a Special Needs Trust for him so that he'll have financial resources when Rob & I are no longer around, and done all the legal planning we can. Those are things we can control. Schooling, college, independent living, employment...all these things are out of our control at this moment in time. But taking care of him now - that's the only way to assure the best outcomes for those other concerns in the future.
Monday, January 14, 2008
We've done it – T is off all dietary restrictions. No more Specific Carbohydrate Diet or Gluten Free Casein Free diets. And the great news is that we've seen no negative side effects since reintroducing normal foods back into his diet…in fact, he has had completely normal poops for nearly 10 days now. He smiles a lot, looks at us more, makes more attempts to communicate, and is SO happy when I put that peanut butter sandwich on wheat bread in front of him. Glorious! I'm so happy for him, and I'm so glad to have my life back after months of making so much food from scratch. I would have gladly done that baking for the rest of my life if we had seen improvements in T's behavior and poops, but we didn't, and I'm not shedding any tears over the diet chapter of his life being done. We will continue to feed him as clean, organic and chemical-free a diet as possible – that's good for anyone – but no more autism diets. THEY DIDN'T WORK FOR HIM!!!
Ah, the double edged sword of these biomedical treatments: they give you hope, but they don't always work. I have a friend here who humbles me (and honestly, concerns me) with just how far she's willing to go with the biomedical interventions. Her beloved son is 4 and they've done over 2 years of biomedical treatments on him, with little to show for it. Her heart is breaking, and mine breaks for her. At coffee this morning I told her just how dedicated she is, and how blown away I am by her drive and energy and willingness to try anything to help her little guy. "You've tried everything", I told her. "And it hasn't made one bit of difference", she said, eyes lowering and holding back tears. To you, dear friend, I say, OF COURSE it's made a difference! You know what doesn't work! You love your son! You've TRIED, and can have some peace of mind knowing that at least you've left no stone unturned. But it doesn't matter to her. She's devastated, and it makes me so angry for her. The DAN! Approach does offer hope for improvement, and many children have been helped, but on the other hand, when nothing else has helped and this carrot of hope is dangled in front of you, always just out of reach for some, it hardens the blow when these interventions don't work either.
I haven't had the same reaction this friend is experiencing. I'm relieved that we tried it, and equally relieved that it didn't work. I know that we gave it as close to a scientific trial as we could have, and we didn't see the results we were supposed to. It's going to allow me to have more time to be a mommy to T instead of cooking all the time and mixing supplements into nut butters. We aren't giving up on all the DAN! Stuff, we're just stopping the special diets.
T and I made chocolate chip cookies on Saturday. We hadn't done that in 11 months. He remembered though, and reached up for the mixing blade when I was done mixing the batter. I paused for a moment, wondering about the raw eggs in the batter, and then thought "What the hell? He's been deprived for so long, and I have eaten WAY too much raw cookie dough to have any reasonable argument as to why he shouldn't have any." So I handed it to him, and he was in sheer 6 year old bliss for about 15 minutes, carefully fingering off each little smear of dough. I'm so happy to have these moments with him again.
Recently as I was organizing my office, I put all of my pregnancy books (What to Expect When You’re Expecting, Your Pregnancy Day by Day, etc) in my closet and closed the door. I am trying to allow myself to feel what I feel and not suppress emotions, but instead honor them. When I looked at those books, I remembered back to my pregnancy…such a happy, joyful time filled with planning, dreaming, imagining…it makes me want to be pregnant again, once more in my lifetime, just to feel that way again. But no doubt about it, I would get angry whenever I’d see them in my office. This confused me, so I allowed myself to really sit and think about why I was getting angry when I saw them. The answer that came to me was this: I really believed, truly believed, that if I read those books and took all their advice and rested and pampered myself and went to all my prenatal visits and got the healthcare that was recommended that everything would be fine.
Perhaps on many levels, things are fine. T is healthy and is really happy now that he’s off the SCD & GFCF diets. Rob & I are still doing really well despite the statistics we hear about divorce rates among parents of children with autism. T is making good progress with going full time into Verbal Behavior therapy. We are blessed to see consistent progress, and to have so many wonderful, dedicated people working with him and loving him.
But on many other levels, things didn’t turn out fine. Despite pouring over those damn books and following every recommendation and rule and having a near perfect pregnancy, our son is autistic. He struggles to communicate and has odd behaviors that make people stare and some behaviors that alienate him (the eagle shriek, for one.) We have no idea whether he’ll ever to go a public school, go to college, live independently, have someone who will love him and have a family with him. I’ll never know for sure if the flu or RhoGam shots I had (both at my OB’s recommendation) had anything to do with creating a “toxic event” for him in utero. (I don’t blame myself for this, but it will always be an unanswered question for me.) Recent research points to genetic causes – changes in the DNA at chromosome 16 – but the genetic testing T had didn’t show any problems.
So I read the books, I followed the rules, and everything wasn’t fine. Despite it all, sometimes, unfair and bad things happen. It made me want to scream and rip the pages from those books and burn them so I never have to look at them again.
I don’t want this to sound like I don’t love T or think he’s wonderful. He IS wonderful, and I love him with every cell of my being. He is flesh of my flesh and I will do everything I can to be the best mommy he could possibly have. Absolutely and positively, without a doubt, he is a glorious child and an angel sent down to be with us. And we have been given the responsibility of raising this wonderful little boy, which we accept wholeheartedly.
I just don’t want to have to look at those damn books anymore. What’s done is done.
Saturday, January 05, 2008
I may just have to do bullet points here:
- T opened his presents this year. He sat with us, and opened his presents. This is the first time he's done this, and he needed a little assistance occasionally, but by God, he did it.
- He was allowed to eat a few Christmas cookies – and they weren't GFCF or SCD legal. No noticeable change in diaper contents at the time.
- He is making more eye contact when requesting things he wants. In fact, he'll walk to another room to bring us what he'd like (fill my juice cup, put this DVD in), and can respond verbally when asked "What do you want?"
- He's making faces at himself in mirrors and really having a good time.
- He's getting better and better at saying "Night night, mommy" at bedtime.
- We started Epsom salt baths.
- We're continuing Methyl B-12 injections, and it is not a traumatic event anymore. In fact, he turns around for me, gives Rob a hug, and it's done without a single tear shed.
- Major, major event: He cried when he had to say goodbye to Auntie J, Grandma & Grandpa after Christmas. Understand that he has never, ever displayed separation anxiety, even for me.
I'd say we've had a great holiday! But most important, T is a happier boy than a month ago. What a relief. School is good, therapies are good, diapers are getting better…geez, part of me is waiting for the other shoe to drop, but I'm enjoying this, damn it! And I'm ready for 2008.
Quick entry – I have a lot to update about Christmas another time – but I just had to report that T had a normal poop today. In fact, he had two – after not pooping for two days in a row. He is happy, energetic…
He’s been eating peanut butter sandwiches on whole wheat bread, cheese, rice crackers that are not GF (gluten free), and other things that he hasn’t eaten in 11 months.
The child is the best lab, the child is the best lab…