Thursday, January 27, 2011

Into the Ocean

Locations of visitors to this page 
Long time no write.

Let's see...since we last spoke:

On January 5th, I (Jaime ) celebrated my 35th birthday. For once I took the day off, which I felt I had earned since I spent almost my entire vacation the week before in the hospital. It was lovely.

Two weeks ago, Laura sliced off the end of her thumb (like 1/4 of the thumb above the first knuckle!) when I made her slice lemons on the mandoline. We spent 7 hours in an ER while our friends watched Simon. It was awful (she was in pain and the bleeding took quite a while to stop and I was slightly re-traumatized from being in the ER with her after her head injury) AND we actually got some real quality time together. Yes, quality time. In the Emergency Room. I guess it sounds really sick when you say it out loud. But we actually had a kind of a nice time together, if we ignored the people barfing and yelping in the other bays.

Laura's Dad came for a visit and we had very sweet times together.  Bernie Fitch is a baby whisperer.  Simon was clearly besotted and misses his Pop Pop.

Last weekend we all went to Calistoga to celebrate my birthday and had a lovely time soaking and eating and chatting with friends.  And miracles of miracles, no one went to the hospital on this vacation.

We'll work on photos in the next post...
Now to begin the theme that may continue for a while.  Preparing to set sail in a big, vast, potentially terrifying ocean called the Oakland School District.

Yesterday we had a rep from the Oakland Unified School District come to our house along with a rep from the East Bay Regional Center. The Regional Center has been coordinating all of Simon's services for the last couple of years. Those services end the day Simon turns 3 so we were meeting with the school district rep to talk about all the different assessments Simon will need in order to figure out what services the school district will provide us and what our options are for preschool.

It was great and terrible. The district rep was very sweet AND I kind of wanted to slap her across the face for asking so many questions about Simon's development that we had to answer "no" to.

This is what most of yesterday sounded like:

Her: Okay, lets talk about his blah blah (speech for example)

Me: He talks a lot but he doesn't say much.

Her: Does he ask for help when he can't do something or get something?

Us: No. He may just say the noun. He NEVER says, "Mama/Mommy, I want the ball"

Her: Does he point at things he wants or pull you to something if he wants it?

Us: No.

Her: Can he follow simple directions?

Us: Not really. If you ask him to do 2 things in order, he will only do the last one you requested.  We're working on this.  A lot.

It went on like this for about an hour and a half. A few timeswhat she was proposing that he might do was so preposterous I almost laughed out loud.  Or cried.

About halfway through, we had a classic example of why we're so concerned about his language processing. He made a funny face, so I asked, "Simon, do you have poop in your diaper"? No answer. I ask 3-4 more times. Finally I say, "Simon, do you have poop in your diaper, yes or no". He then cheerily parroted, "Yes and no, yes and no". I asked again. Again, "yes and no". I said, "Which one". He finally says very definitively, "YES!". I go check and of course there's nothing in his diaper. I just look at the district woman and say, "This is what happens most of the time".   Fortunately she is a speech therapist by training, and she said she could really see what was going on.

It was great to know that she sees it  (this sounds awful) because we actually want things to look as bad as possible.  If he's just sort of borderline and is having a good day when they do his assessment, he might not qualify for the services he needs. I was so happy he was doing stuff to show how not typical he is. It's beginning to feel like we're not going to have to worry much about him not qualifying for some of the basic things. His developmental progress...frankly...kind of sucks.

It's SOOOOOOO frustrating to me to have a kid that can talk but that can't really communicate. He has a huge vocabulary but he can't quite seem to figure out how to string it all together to be useful. I keep expecting him to be able to answer simple questions like "do you have poop" or "who did you see today when you went to the park" and he can't/won't. It's making me a little crazy. It's like having an infant in the frustrating ways of not really knowing what they want, but he's 3.

It also makes me concerned that these delays are not from the hospitalization but that he may have a bigger syndrome (I keep wanting to find out more about testing for Noonan's syndrome, for example) that includes Cardiomyopathy as well as cognitive delays. I'm not quite sure what to do about this or if it would even matter in the long run- the syndromes aren't "treatable" and he's already on everyone's radar.

I just want a goddamn answer. WHY!?  Why.  Why does he have Cardiomyopathy?  Why is he so tiny?  Why does he have trouble with his balance and running and why won't he jump and move around like other kids?  Why does he barf all the time?  Why doesn't he eat at all? Why is his language processing so bizarre?  Everyone just guesses at the answers to these, including his doctors.  "He was hospitalized for 4 months" doesn't seem like enough of an anwer for me. I just want one damn piece of drift wood to hold onto. Just one.
 
In terms of what the district may offer, we don't really want him in a "medically fragile" class because that is basically for kids who are really, really debilitated (like on ventilators, not ambulatory, etc).  We also don't think it would be appropriate for him to be in a typical preschool.  Our early intervention program folks (and we are too) are worried that if he goes to a typical class he will getting tagged as the really cute kid who says cute catch phrases all the time and slip through the cracks. 

I think our goal is an enriched speech and language class, which the district offers (a few of them actually).  I know Oakland Unified has a horrible reputation in a lot of ways, but it's actually the best place for us to be right now b/c the district is so big, it has a lot of options.  A smaller district might not have the appropriate stuff for him.  So I'm cautiously optimistic.
 
So as we begin this process, and April 9th approaches it feels like we're about to leave this little pond of our Early Intervention Program and get whooshed into the big, vast, ocean of the Oakland Unified School District. 

It could be great, but it also might be really easy to get lost out there...

5 comments:

Holyoke Home said...

Sending you tons and tons of love and love.

And you don't even have Laura's complete thumb to hold on to anymore!!!

I'm working really hard on sending you a giant piece of driftwood.

Anonymous said...

Okay. First Simon is amazing and so are you moms. Obviously, this should just be the cut and paste opening for any comment on this blog.

As for the speech and cognitive delays, I am curious about the examples you gave about his communication when asked a question. In my office, when I am working with kiddos, if the speech and language processing gets in the way, I always try pictures and non-verbal or limited language trials.Keep in mind, my focus is on the educational piece, and though I am not a speech therapist processing and production is pivotal in most learning situations.

If you showed him pictures and asked, did we go to the park or the pool today? Will he point to the right one? Then shown pictures of the people he might have seen at the park, can he point to the right ones? I hate to imagine what that would look like with the poop or no poop example, but you get the idea.
I do agree that you want things to look bad so he can qualify. At the same time, you want him placed in an environment that is supportive while also seeing to it that he has peers around him that can model some of the learning behaviors you want him to learn and adopt. If you pick a classroom with kids who are severely impacted you may have a higher level of services, but fewer opportunities for growth alongside peers.
No matter what you discover along the journey, just be sure you are getting loads of support and checking in with folks with a lot of advocacy experience in your district. Oh, and also remember to take more wonderful vacations where no one goes to the hospital. Santa Cruz is a great place for your next long weekend. Hint hint.
Love to all three of you,
Rachel

Aaron's Grateful Mom said...

Thank you, thank you, thank you for sharing how the three of you have been.

I'm not sure how I first came upon your site a few months ago, but I must share that you three (especially Simon) have touched my heart. My own little guy (now 7 years old) was in the hospital for his first two months of life and to see Simon reminds me of how important and precious each day is.

Thank you for sharing the love that you three have. I am so thankful that Simon has kind, caring, loving mothers like yourselves.

So glad to hear that each of you are well.

Sending prayers and positive thoughts your way. :)

Aaron's Grateful Mom said...

Thank you, thank you, thank you for sharing how the three of you have been.

I'm not sure how I first came upon your site a few months ago, but I must share that you three (especially Simon) have touched my heart. My own little guy (now 7 years old) was in the hospital for his first two months of life and to see Simon reminds me of how important and precious each day is.

Thank you for sharing the love that you three have. I am so thankful that Simon has kind, caring, loving mothers like yourselves.

So glad to hear that each of you are well.

Sending prayers and positive thoughts your way. :)

poopymachine said...

Second post from me, on your blog..:) It's like I'm reading a very well written version of exactly what we're going through with our son, Alex. Esp the echolalia. The assessors would come in, test him (and he'd test well..which is a huge frustration when we're trying to get him services..) and not find anything really wrong.