In my last blog post, I listed some stuff that was going on with Joshua. We went to all the appointments, so I have updates on everything.
Eating: The nutritionist was happy with Joshua's calorie intake and bumped us down from 18 ounces (540 calories) to 12 ounces (360 calories) of Pediasure per day. Our calorie goal for him is to consume at least 1,000 calories per day, so he will now be getting about 2/3rds - 3/4ths of his calories by mouth. We will continue feeding therapy once per week to try to help him learn to eat a broader range of food. So we still have some work to do before we can seriously discuss removing the feeding tube, but we are moving in the right direction.
Snoring: The pediatrician believes that Joshua's snoring, drooling, and coughing is related to allergies and asthma triggered by the change of seasons. She put him back on 5 medicines and they seem to be working. (This is a huge relief because if the snoring wasn't allergy and asthma related, then we might have been looking at surgery and/or oxygen again.) We will see the craniofacial team in a week to see if we need to take any further steps.
School: Joshua did qualify for developmental preschool through the public school system, so he will start attending school 3 hours per day, 5 days per week in October. I'm feeling pretty nervous about this, as he still sometimes has a hard time tolerating an hour of church nursery. But I'm hoping that this will be a gentle setting, so even though 15 hours per week is a lot of time for a 3 year old, hopefully it will ease him into the other aspects of school. It's a language intensive program and his main delay is speech, so that should be a great fit. If things don't work out, we will just pull him from school, get him therapy services privately, and maybe try again next year. (As an aside: sometime I might blog about the whole IEP process, what it's like to be a parent rather than a professional in that setting, and what it's like to be the helicopter parent who is probably making all the teachers roll their eyes.)
We now have a 5 day stretch with no appointments, so we kicked it off today with a Pumpkin Pie donut and a morning at the beach, both of which were lovely. I hope you all have a nice weekend!
Being a mom of IEP children can be rough. Mostly because depending on how good your team is, you do feel like that mom that they roll their eyes or cringe when they see you coming. But as someone has told me, it is my job to fight for her, so they can roll their eyes all they want, your child needs you to be that hellicopter mom if you dont' get a good team. I just had a 504 meeting for my middle daughter and it is now a full week after the meeting, and the teacher, according to what my child has brought home, has not done anything they all agreed to do. And they were the ones that came up with the "plan" so for now I am dating the papers she brings home, and putting them in a file and if there is not a change in the next two weeks, I will file a formal complaint. But I even told those teachers, I HATE being the parent that makes them cringe when I walk into the building. I never wanted to be that parent. But I would not trade my life for the world, even though if I could change it to make it easier for my children, I would.
ReplyDeleteJody, yes, this is it exactly!! I don't know if we will have an adversarial relationship with the school or not, hopefully it will all be good. But having sat in on dozens of IEP meetings as an attorney for the child back in Washoe County, i know we are being way more assertive than the typical parents. i think this probably has a mostly positive effect, but i'm sure it also annoys some of the team members. It's encouraging to hear from a fellow IEP parent :).
DeleteOn the positive side, my other two children on IEP's are doing great and have a great team! But mostly they have a great teacher, that does what they need to do for my children, and never make me feel like that pain in the butt mom! So two out of three is not too bad. There is hope! Also when Reasa started the early intervention schools, She was nervous at first but then she loved it. And she would be upset on the days they didnt have it. However, ours was only 4 days a week I think, but that may be a washoe county thing.
ReplyDeleteI'm glad Reasa liked it despite being nervous, this makes me feel hopeful for Joshua!
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