Sunday, May 11, 2008

Resolving on its own?!

As the doctor arrived to do the new assessment on Captain Adventure, I realized with something of a jolt that it was almost exactly one year ago that I ripped up my paycheck and came home so that I could focus on the family’s needs without the constant whining from the peanut gallery – I (and a few others in the organization with two working parents) had been reprimanded several times for ‘excessive’ and ‘abrupt’ sick days.

With four kids going to school and/or daycare, combined with the worst flu season we’d seen in a long, long time (one of our daycares actually closed down for a day to have their toddler room professionally sanitized!), well.

There were a lot of sick days. And with both of us working from home, that meant both of us had to deal with trying to talk on the phone while children screamed and cried and begged for medicine, popsicles, ponies and trips to Europe in the background.

But I’m not going to pick at that old scab. Or the one where we’d committed to Certain Things (the remodeling, mostly) based on two incomes and then had to figure out what to do about them on just one.

I’ve got a new scab to pick.

After I had done the final rapid-fire ‘yes, no, sometimes’ response section of the assessment, the doctor sat back and said, “OK. Right. So. Why, exactly, did you feel he might need treatment?”

As I was explaining all the things that had so alarmed me, he kept nodding and occasionally scribbling something down. I told him how things were last year, how they were as recently as Thanksgiving. I explained about the tantrums, the stiff body language, the head-banging and the fixated behaviors, endlessly running around and around a table until someone intervened, distracted him into something else. The utter lack of communication, the lack of empathy he had shown toward his siblings.

How far he’s come in a short year.

“If he had been like this a year ago,” I concluded. “I probably wouldn’t have worried enough to jump into all this.”

“That’s how these kinds of isolated speech delays often are,” he replied matter-of-factly. “Just when you get good and worried, they resolve on their own.”

Have you ever found yourself suddenly and completely enraged by what is actually a fairly innocuous comment?

Oh…I got well and truly pissed.

This isn’t resolving ‘on its own’. It is resolving because his teachers and I are working our brains out on it. It is resolving because there is a team of specialists coming to him every single weekday, speech therapists and occupational therapists and of course his patient and wonderful teacher. It is resolving because his sisters, day in and day out, put up with him, work with him on communicating clearly, wait patiently for their mother to have a second for their wants and needs, and otherwise behave like really, really good sports.

I am humbled by my daughters, sometimes. They have ten times the patience I do, and dear God, they are only children.

I am spending hours each week with flash cards, playing the Color Game, taking him out in the car and asking him to identify things. I go through the supermarket with him asking him to find the oranges, the apples, the bananas, the bagels. And I’m going to admit something horrible to you right here: Sometimes, I really hate it.

I hate the way he’ll yell his mangled attempts at ‘banana’ at the top of his lungs. I hate the way people sometimes look at us when he garbles out something completely incomprehensible – he’s almost four, and he looks every minute of his age, and he often sounds (oh, brutal reality) retarded. I hate it when he gets frustrated and kicks up into a tantrum in public.

I hate sometimes overhearing things. “Mommy, what’s wrong with that little boy?” “Don’t stare, honey, he’s got…he’s…well, he’s special…”

Sometimes, I’d really just rather leave him at home with daddy and go shopping alone. Sometimes I do. And then I feel guilty because I’ve just let another ‘learning opportunity’ slip away. So the next time, I load him up and take him along and we play the Shopping Game, and people sometimes stare and sometimes they offer Helpful Hints and sometimes they want to tell me about their {nephew, cousin, grandson, neighbor’s kid} who has {Downs syndrome, autism, Pokeman Toe, Presbyterianism} and the miracle cure was {gluten-free, sugar-free, organic t-shirts, reading to them in French}.

My personal favorite was the old lady who chastised me for carrying him in the parking lot. He’s a great big boy he ought to walk you’re spoiling him he’s going to grow up a monster!

A few moments later as he cheerfully screamed, “GAH-BAH-BOO! EEEEEEEN GAH-BAH-BOO!!” (uh…would you believe, ‘shampoo, green shampoo’?), she tapped me on the shoulder and said, humbly, “I’m so sorry. I didn’t realize he was retarded. You poor dear, it must be so hard for you.”

Lord forgive me, I wanted to punch her right in her wizened old kisser. Mostly because I felt like I was going to Cry In Public (gah!), and the only thing I loathe more than crying in the first place is Crying In Public (gah!!).

There is a whole team of concerned people working with him, every single day, to get him where he is right now. A lot of sacrifices being made, a lot of work being done, a lot of care and concern and love focused on helping this little guy learn how to swim with the rest of us fish.

‘Resolve on their own’ my arse.

“Actually, it isn’t resolving on its own,” I said briskly, trying to keep my tone chipper while inside I was baring my fangs and snarling. “He’s going to the special needs preschool, and of course we’re working on it here at home too – in fact, I quit my job so that I could make all this happen for him.”

The man had sense enough to agree with me that no, it wasn’t “just going away” and that yes, all our hard work was definitely, absolutely, positively the reason he was enjoying such a tremendous improvement.

And then he ran for his car.

Sigh. Sometimes, it really is the little crap that sets you off, you know? The bigger things, well, you understand why they set your hair on fire. But I’m always surprised when some tiny little thing gets my fur all standing up and sets steam coming out of my ears.

We’ll have his formal report in a few weeks. We also have a major psychological evaluation at the end of May, for which I have to trek all the way to Sacramento.

The bad news is, I have to go all the way to Sacramento.

The good news is, due to the (ahem) FOUR HOUR roundtrip drive plus the two hours of assessment, Daddy will be in charge of the other three Denizens and their school pickups / dropoffs.

I’ll only have Captain Adventure with me.

He is, you may recall, a Yarn Monster.

He will not mind checking out the Sacramento yarn stores while we are there. Purely for research purposes, you understand. Because Rams asked about the Sacramento yarn stores and frankly the only one I knew of has closed (not, uh, that I had any time for yarn stores because obviously I rushed right home when my train arrived in Sacramento a little early and did NOT spend any time at all driving by the yarn store I remembered downtown…).

So, as an act of purest nobility and only for the sake of the common good, I shall drag myself into every a few one or two at the most yarn stores in Sacramento after his early-morning assessment.

...there goes MY allowance for the last three months...

14 comments:

Yarnhog said...

My head would have exploded.

I know how long you've been waiting for this assessment, and I can only imagine how frustrating it must have been. (And it is SO not awful to hate it sometimes.) But you know, you are still the best judge of his needs and progress. Obviously, your endless hard work is paying off. Your son is one lucky little boy.

Lydee said...

your son is lucky to have a mom dedicated to working with him. I hate going to the store with my kids and try to avoid it as much as possible. It's okay to hate it.

You deserve many, many trips to the yarn store. :-)

Sara said...

Ugh - I'm a new reader (and I forget which linky linky trail led me to you) - but I SO get what you mean. Terry (my now-8-year old's other mom) had Toby (then 2) in the parking lot of the grocery store, she was transferring bags of groceries into the car, and this little old biddy walked by and gave Terry a huge lecture about how she needed to TALK to her son more often, as SHE had and HER kids were all EARLY talkers...

Terry was incredulous - she looked Toby in the eyes and said "Toby! If only I had known!" this the preemie wonder boy with CP and who didn't utter his first word til he was 26 mo old and who had a host of special services and therapies leading and grownups watching and working with him up until that point (and beyond, it continues today, though he only talks when he's awake at the moment)

keep on walking forward - you're doing a good job ;)

Anonymous said...

I've got one of those kids too. He has taken so much work, and trial and error, and time and I had to grow that thick skinned, can't hear the negative remarks or see the head shaking of strangers who are so ready to tell you how to fix your kid.

He's not normal; he never will be, but he's nineteen now and he's awesome and I love him to bits. He was finally diagnosed with Asperger's in his mid-teens. It relieved a lot of guilt (because it's not my fault) and created a lot of guilt (because I should have known sooner and done more.) Guilt is just part of the motherhood package!

I really think love "cures" a lot of it. Waiting and believing and doing the best you can over and over. I just wanted to tell you that I've been there, and it's so hard, but the future is full of infinite possibility.

Happy Mother's Day!

Steph B said...

I'm with Yarnhog...my head would've exploded. What an idiot. I'm sitting here stammering with rage on your behalf. I think "on its own" is really spelled "Tama"!!

Amber in Albuquerque said...

Another new reader (knitter too). Another mother of a child with special needs. Another professional who has had to make (big, but not as big as yours) career sacrifices for her child. I'm getting great help from the pros. From the school? Not so much.

Just wanted to let you know 1) I like your blog (a lot) and 2) you aren't the only one who sometimes feels resentful of the whole situation and then guilty because you are feeling resentful.

You aren't horrible. You're horribly normal, it's just that moms like us are in the minority and usually isolated by our circumstances or spread out geographically (we only talk on the internet). Hope you can hold onto this next time some 'regular' mom (or grandmom) is giving you a load of crap.

Heidi said...

Wow, sounds like you have been dealing with quite a lot. Don't foret to breath yourself. From this point, it sounds like you are both accomplishing lots and living life to its fullest. Keep up the good work.

Chris said...

I so get it. I am the mother of a "special" 12-yr-old daughter. She was born at 2 pounds and has CP. She's my happy child and most days I am grateful for the privilege of having her in my life. Other days I am just so tired of dealing with her tantrums, the stares and comments of others, and having to tend to her needs in the bathroom. My friends who complain about their kids getting a 'B' rather than an 'A' just don't get it and never will. So I ignore them and just get through the next day. I love my daughter and survive by escaping to yarn stores. Happy shopping in Sacramento.

terena said...

AAARRRRGGGGGGHHHHHH. Oh, yeah. Been there. The stares, the so-called professionals poo-pooing my efforts, the other profestionals telling me I'm not doing enough, the "helpful" strangers, the unsolicited pity... all because my daughter is "special." Don't you just love that word?

You are super-mom, and his sisters are the Queens of Sisterhood (their patience puts them beyond Princesses) and all that love has helped Captn Adventure in ways no "expert" can measure. You Rock!

Moira said...

I agree with Terena!!! YOU ROCK and the Girls are Wonderful!!!

I would have decked the lady in the parking lot!

Anonymous said...

yup, yup, yup. The world is full of people that know how to raise your child better than you do. I always just wanted to tell them they could take him to THEIR house and try those methods out.

One of my sons is blind and his biggest handicap is people that either expect the unreasonable (you could describe colors to him) or don't expect anything at all (how could a blind child eat spaghetti with a fork or make his own bed, or ride a bicycle).

You are obviously the expert on your child and I am glad you are assertive (agressive if need be) enough to demand appropriate treatment. I thought the "experts" had the answers, but they never raised THIS child and they were often wrong wrong wrong.

Judi

Booa said...

Oh, Tama, the fact that that doctor still walks the Earth is a testament to your self-control. Resolves on its own? Sheesh. It's so hard to tell from the outside how hard you worked, or for people to realize how much progress your kid has made. My son spent the weekend very excited, and so he was hand flapping like mad. It's a little embarassing, but he's come so far. People who remember the tantrums when he was little are amazed, and I try to keep that in mind--how much progress he's made.

I don't know how much progress I've made--I still want to kill the people who told me, when my son was younger, that "A good spanking will cure him." Grr. I'm glad my son was born now, in a relatively more enlightened age--I'd hate to think what would've become him a hundred or two hundred years ago...

Hang in there, Tama, you rock!

Kat said...

Hi, I found your blog last week when I followed a link from the Yarn Harlot and I've been coming back ever since. :) I'm a speech-language pathologist from Hawaii and although I don't know you or your family, it sounds like your son has made tremendous progress thanks to you, your family, and your team. To be honest, I dislike these "autism experts" because I find that although they can occasionally be helpful, most of the time the "autism expert" does not really know what he/she is talking about. Tell that doctor that although isolated speech delays occasionally (as in once in a blue moon) resolve on their own in young kids, they typically do not, not to mention that it sounds like your son does not just have an isolated speech delay. Your son's progress is absolutely due to the amazing support that he has and how dare this doctor discount the sacrifices that your family has made and the amount of work that has gone into helping your son. Shame on him.

Ewe-niss said...

Some days I just want to give you a hug. :-)

Every mom with challenging kids ends up fighting for their kids - the whole time wondering what would happen to them if you weren't there to do it. (I have been there.)

I just wanted to tell you that your girls are great! Give them extra kudos... and to let you know that from their perspective it is easier for them than you think. I grew up with a deaf, blind, and mentally handicapped brother. I remember adjusting games so that he could play with me and my other brothers. I also remember mom and dad would hire a babysitter for us and I would really be the one that took care of David (even though I was about 9 at the time). I knew how to get him to do things that he needed to do. I knew what all of his little sounds meant. It really was fine. As a kid I had a different perspective, as an older sister I was my brother's protector. It wasn't a burden on my shoulders. The nice thing about being a kid is that I lived in the moment. You don't worry about the future or how anything will progress. Kids do have more patients because there is less riding on it for them. I still was able to do everything I wanted to do as a kid. Did I have more responsibilities than my friends? Probably. Did it bother me? No. I think I grew up a little older than most, but not carrying the world.

The other day I was in a neurologists office and a young man was waiting in his wheel chair while someone was getting his paperwork together. I heard him making low noises. I had to smile. It was the exact sound that David use to make 30+ years ago when he wasn't happy.

My mother has fought the fight for 40 years for my brother. It gets easier. She has many stories of the early days. (My favorite stupid story is many years ago Dave was at the School for the Blind - they wanted him to learn left and right - for his shoes and socks. They placed blue and red tape on his socks and shoes! ...ummm he is blind... and aren't socks sort of free, they could go on either, right?)

Here in 2008 with my children there are often times I want to smack the professionals. And I have it easier... hang in there!!!!!!!