Saturday, September 27, 2008

More emotions

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

My concern for Palin

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


I promise I won't post too many political comments, but when the candidates speak about special needs children, it's fair game here. This one begs to be voiced. Sarah Palin certainly grabbed my attention Wednesday night when she pledged to be an advocate in the White House. I hoped this to be true. Turns out I may have been right to await judgement. This quote is from a blogpost on the CBS news website, fact-checking Palin's speech.

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.

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

VP pick

Boy, oh boy, do I have a lot of reactions to the Republican's nominee for vice president. I could write volumes, but I will allow Rob to speak for us.