2 weeks ago we went to Baltimore for the weekend. It was the first time we ever went anywhere overnight by ourselves in 3 years. It was not easy.
We needed to stay someone very close to the harbor because we needed to be able to walk back to the hotel to tube feed Adam and be able to take naps and have his medical stuff nearby. We stayed at the Hyatt- I would recommend it.
He's also a crazy runner. Like, everywhere he goes, he needs to run there and the Inner harbor has no railing, no wall, no fence. It was a bit dangerous at times and Matt was great at helping us herd Adam away from the water. Adam also would yell, "No, THIS way!" and demand to go in another direction than the one we were heading in. Quite a few tantrums, which results in vomiting. Adam also ended up in time out a few times, too. Overall, I think it was great for him to get out and see new things and experience things. He spent the first 2 years basically living in 2 rooms, so everything we expose him to is a good thing.
Our trip went like this:
Arrived 7 pm Friday, we checked in, went to eat and let kids run around Harbor area. Saturday: Aquarium in am, After lunch Adam went back to hotel with Phil for tube feed and nap while Matt and I stayed at Aquarium and toured some old ships in Harbor, Met up for dinner at ESPN Zone and Phil and Matt went to a baseball game at night. Adam went to bed.
Sunday: Ft. McHenry, Lunch, Science Center, Dinner at my Aunt and Uncle's house and drive home around 8:30 pm.
Tube feedings are hard to do on the go. The car tends to make Adam vomit. Twice he threw up in his carseat. There is a lot to bring along (pump, syringes, water, food, bag) and people always stare, so we found it was easier to slip away and feed him. Going places also illustrates how great Matthew is with his younger brother. He helps us with Adam and provides an extra set of hands. He's patient with him, too.
We were exhausted when we came back home, but Matthew and Adam really had a great time, so we did, too.
Let's start with I'm a loser. I mean, here I am all tough girl and of course I get teary and emotional at the iep meeting today. Needed a tissue. Great, I'm one of 'those' parents. I know they will talk about me afterwards.
Here's the deal, we went to a lawyer. Great lawyer. super nice. We gave her information and all the the results and some money and she coached us and prepared us for the iep meeting. She would have represented us at the meeting, but that was too much cash for us for now. We got the information and were prepared that if it did not go well, we would NOT sign it, then pay her the retained fee and go from there.
Her coaching was good. We felt prepared and knew what to say. Adam will have what he needs, but it should be noted that we have been to numerous meetings as teachers and are more informed about this stuff than the average parent. I would say that this process is not designed for the poor or uneducated and it would easily be intimidating for a parent.
I mean, there's a whole lot of professionals, they give you reports and go over test results with no glossary of terms. I mean, what it you don't know: norm-referenced, percentile vs. percentage, domains, true developmental functioning, scaled score, quotient, or confidence interval.
I guess, you'd ask, or be intimidated or not even ask for fear of being seen as dumb. Also, what if we hadn't paid the attorney, because you didn't have the money? Yes, there are clinics and advocacy groups, but when I called those, there are long waiting lists due to our budget cuts in state right now. If we didn't pay the lawyer, I think we would have inadvertently screwed up the feeding and medical components and would not have had the knowledge to use particular phrasing.
Also, it was a really emotional thing. Which should be noted and no one really addressed this to us as parents. I mean, up to this point, we knew he was disabled, special, had medical issues and diagnosis which contribute to developmental delays, but no one ever said. "Your son is disabled". We had (up to this point) all kinds of medical labels: subclottic cysts, failure to thrive, chronic lung disease, etc.
Today, Adam was given a legal label. He is now a preschool child with a disability. A disabled preschooler. This is a label that we agreed to. A label that may or may not be overcome. I don't know if at the age of 5, he will have made gains or will this label prevent gains. Will he only achieve to this level? It is a serious thing. It is also a very emotional thing.
It is an emotional label and no one addressed this at all today. No one warmed me this sadness would come. Yes, he needs the label. He needs the services. He needs the help and without the label he will not get the services or help. But it's a crappy label and I wish services would be given without labeling my child. I wish all children would get the education they need without legally labeling them. It also hurts my heart to have such a feeling of permanence.