Nope. I woke up this morning, put on my big girl pants, and headed in to infants and toddlers. I have been through enough of this in the past year, I can deal with this. I know what to expect. True, true, and true. Doesn't matter. It's my baby. Lynne, his case worker, met me at the door with a hug (she is NOT a hugger) and a box of tissues. These are both negative prognostic indicators. She and I sat down, just the two of us, to go through his "progress". I am going to give it to you straight- I will not make you wade through 20 pages of documents before you get the numbers. When he was 21 months old, Nate's language comprehension was at 8 months of age, his expression was at 9 months of age. He is now 33 months old. His comprehension is 14-16 months, his expression is 11-12 months. At least the comprehension is improved, but the fact that his speech has progressed by about 3 months in a year is just so, so, depressing. And these two pieces of the puzzle being so severely delayed set him up to be delayed in every other area as well. Such as gross and fine motor, he is testing at about 21 months. Much of this is because he can't comprehend what he is supposed to do, or what the person is asking him to do. I sat through all of these numbers with dry eyes. I can do this, I can do this. Then she asked me if I had any thoughts or comments.....I started talking, or trying, and out it came....sob, sob, sob. It wasn't even just the assessment, it was being back in that room, with Lynne, thinking about how the team told me last year that I wouldn't even recognize Nate a year from then. God I wish that were true. Yes, he has made a little progress, but not nearly as much as anyone expected. Especially in the language and social aspects. Mommy guilt always kicks in with a vengeance at times like these- what am I doing wrong? what am I missing? Am I too lazy and that's why he's not improving? She told me I am doing an amazing job, that I am a very motivated parent that is exploring all avenues for her child. I wanted to punch a wall. Why isn't all of this helping him more? The diet, the supplements, the therapies, the one on one at home....why?????? Of course no one can answer that one. After these check-ups I find myself vowing never to turn on the TV again- not for the kids, not for myself. I vow to drill this child constantly, read to him, do anything developmentally appropriate that I can think of. This, of course, is not practical- not for us, not for any family. I just wish I knew what to do.
We discussed the next steps. Turns out this fall is going to be really intense again. He basically has to go through this full assessment process again in order to be placed for his 3 year old stint. Because he will change agencies- from Infants and Toddlers to Child Find. His class will be larger and longer, but to make up for this, a therapist will be visiting the home 1-2 times a week. He will likely go to Benfield Elementary School, where they have an ECI program. But first the assessment- then another IEP meeting.
After the meeting concluded, all I wanted in the world was to see Nate. It was about 9:20am, and his class isn't finished until 10:15. Lynne snuck me into a back corner so that I could observe but Nate couldn't see me. His teacher, Miss Gina, shuffled me to different hiding spots throughout the hour so that I could observe his drills, play, circle time, art time, and game time. She went through his book of drills with me to show me his progress. While all of this was wonderful, and the teacher was extremely accommodating, I feel like this observation period, at least today, was a mistake. Because Nathan was by far the lowest functioning child in that class. And one of the oldest. I feel, once again, like I have been punched in the gut. Most of the other kids have speech, they participate, they get "in trouble". Nate just sat there- he followed directions, ie he went where he was told, but other than that it seemed like he just sat there in his own little world. At one point I was talking to the teacher, and she commented that she knew how frustrating this must be for me. She stated that she has a niece with autism, who is now 21. That she has done very well with ABA- she can do simple tasks now, but nothing so complicated as going to the store and buying something. This story did not make me feel better.
In case you were wondering, bi*** aid was there today, but was not working with Nate. I reported the incident from yesterday to Lynne, and was SUPER sweet to the little snot all morning- I prefer to kill with kindness.
It is so hard to watch your baby struggle so much. Every time I think about this morning I cry all over again. Now, so that I don't lose it any further, I am going to force myself to make a list of positives:
1. Lynne and Gina said that Nathan seems more "open" in the past month- that the fact that he is clapping on command is "huge"
2. we have the assessment for the more than words program next Friday- maybe that program will help
3. Nate is not being sent to the program for the 3's that are "severely" disabled, he is going to regular ECI (early childhood intervention) classes. in and of itself, that is a positive
4. much of Nathan's progress is not going to be captured by these formalized assessments- they way he responds when he sees someone he knows, the tenacity with which he now demands what he wants, the way he is pointing to the kitchen counter and saying "that" 15 times until I get it right. there is no way to quantify that
5. at the end of class today, I snuck out, and switched off with his aid. She was holding his hand, and they were preparing to walk the kids out to the pick up line. I just slipped my hand in his and said hello. He looked up, looked down, looked up, realized it was me, did a little jumping and grinned like a little goof. Then chattered to me the whole walk out and whole drive home. When I had to leave him with the sitter he went ape. He loves his mommy as much as she loves him.
We discussed the next steps. Turns out this fall is going to be really intense again. He basically has to go through this full assessment process again in order to be placed for his 3 year old stint. Because he will change agencies- from Infants and Toddlers to Child Find. His class will be larger and longer, but to make up for this, a therapist will be visiting the home 1-2 times a week. He will likely go to Benfield Elementary School, where they have an ECI program. But first the assessment- then another IEP meeting.
After the meeting concluded, all I wanted in the world was to see Nate. It was about 9:20am, and his class isn't finished until 10:15. Lynne snuck me into a back corner so that I could observe but Nate couldn't see me. His teacher, Miss Gina, shuffled me to different hiding spots throughout the hour so that I could observe his drills, play, circle time, art time, and game time. She went through his book of drills with me to show me his progress. While all of this was wonderful, and the teacher was extremely accommodating, I feel like this observation period, at least today, was a mistake. Because Nathan was by far the lowest functioning child in that class. And one of the oldest. I feel, once again, like I have been punched in the gut. Most of the other kids have speech, they participate, they get "in trouble". Nate just sat there- he followed directions, ie he went where he was told, but other than that it seemed like he just sat there in his own little world. At one point I was talking to the teacher, and she commented that she knew how frustrating this must be for me. She stated that she has a niece with autism, who is now 21. That she has done very well with ABA- she can do simple tasks now, but nothing so complicated as going to the store and buying something. This story did not make me feel better.
In case you were wondering, bi*** aid was there today, but was not working with Nate. I reported the incident from yesterday to Lynne, and was SUPER sweet to the little snot all morning- I prefer to kill with kindness.
It is so hard to watch your baby struggle so much. Every time I think about this morning I cry all over again. Now, so that I don't lose it any further, I am going to force myself to make a list of positives:
1. Lynne and Gina said that Nathan seems more "open" in the past month- that the fact that he is clapping on command is "huge"
2. we have the assessment for the more than words program next Friday- maybe that program will help
3. Nate is not being sent to the program for the 3's that are "severely" disabled, he is going to regular ECI (early childhood intervention) classes. in and of itself, that is a positive
4. much of Nathan's progress is not going to be captured by these formalized assessments- they way he responds when he sees someone he knows, the tenacity with which he now demands what he wants, the way he is pointing to the kitchen counter and saying "that" 15 times until I get it right. there is no way to quantify that
5. at the end of class today, I snuck out, and switched off with his aid. She was holding his hand, and they were preparing to walk the kids out to the pick up line. I just slipped my hand in his and said hello. He looked up, looked down, looked up, realized it was me, did a little jumping and grinned like a little goof. Then chattered to me the whole walk out and whole drive home. When I had to leave him with the sitter he went ape. He loves his mommy as much as she loves him.
*hugs*
ReplyDeleteI can't imagine how frustrating you must feel. Each case is different and there are various factors that determine a child's prognosis. You have been doing what you can. That is what matters most and nobody can take that away from you.