Today is another one of those "bad" days. I'm studying reports that I haven't read in a while preparing for an upcoming IEP meeting that includes a 3 year Review of Existing Data. I'm reading information that I have forgotten about and googling the parts that confused me or I didn't catch the first time around. Written reports, evaluation results can be rough. Then finding out what the information means can be even worse.
Normally, I ignore data and focus on my boy. He is so very awe inspiring. The person he is, the perfection of my child is something beautiful to see. Knowing I made this boy from scratch, he is mine and I have been so very blessed with the way he has developed into such a sweet, loving, happy child makes me feel indescribably thankful.
but then I read the reports and it's hard. I'm not sure what all of these scores mean so I'm just going to share some highlights.
Sensory moderate
Motor moderate
Attentiveness profound
Receptive Language profound
Expressive Language profound
Pragmatic/Social profound
Speech severe
Interaction-Attachment below 12 months
Pragmatics below 12 months
Gesture below 12 months
Play below 12 months
Language comprehension below 12 months
Language Expression below 12 months
"His cognitive abilities are assessed below the first percentile which is consistent with prior evaluation results with scores based on no credit on most tasks."
"During these observations, Alex did not demonstrate knowledge of daily routines and expectations. He did not look when his teacher called his name, and he rarely made even brief eye contact."
"He has difficulty producing answers to questions, making choices between items both with regard to his wants and needs and in response to academic activity. Spontaneous speech consists of rote/routine verbalizations."
"during the adapted physical education assessment, Alex was resistive with an attention span that was short. eye contact was poor. During the physical education observation, Alex was partially participating in the activity with full assist from his aide. His skill level was below peer level. Alex could not follow teacher directives independently."
"In each setting, Alex demonstrated little interest in his peers. He watched objects rather than other students and often walked directly in front of others in effort to retrieve an item of interest. ... During outdoor recess, Alex played in close proximity to the other children but did not interact with them."
Even some of the good things they have to say are sad because they don't exist anymore. He doesn't sing along, he doesn't insert names of animals or animal sounds in Old MacDonald or any other song. He doesn't use his words to rush me along when he wants to do something "now, now""come on, come on". I know he hasn't just totally lost everything, he traded for new skills but it's still hard to read. Then I see a post in my "hidden post" folder from a mom who wants me to share a video of a mom having a conversation with her autistic child. I don't know how many people saw this post from Christmas Day, but I was celebrating my own conversation with my autistic son... Silent Sunday (Silent does not mean Absent). So, I go looking for this video and this is what i find... Mother and Child with autism have a conversation. Go watch the videos so you can see why I'm now fighting jealousy.
I know she worked hard for that conversation, I know it is amazing that he was able to talk to her like that. I know it's definitely worth bragging about and I do not resent her bragging what-so-ever. I am proud for both of them because I know what it took to get that far. They worked hard and earned the bragging rights. I love to hear you guys brag no matter what level your child functions on because I know that your road is no less difficult than ours, every boast leaves me just as proud of your children as I am of my own. I know the pride she had in her boy was just as strong as mine when we made these videos. I know I cannot compare my child to hers because all of our kids are different and all of our kids work harder than anyone I've ever seen to acquire the skills they have.
So, knowing all of this, why do I still have the struggle?
but then I read the reports and it's hard. I'm not sure what all of these scores mean so I'm just going to share some highlights.
Sensory moderate
Motor moderate
Attentiveness profound
Receptive Language profound
Expressive Language profound
Pragmatic/Social profound
Speech severe
Interaction-Attachment below 12 months
Pragmatics below 12 months
Gesture below 12 months
Play below 12 months
Language comprehension below 12 months
Language Expression below 12 months
"His cognitive abilities are assessed below the first percentile which is consistent with prior evaluation results with scores based on no credit on most tasks."
"During these observations, Alex did not demonstrate knowledge of daily routines and expectations. He did not look when his teacher called his name, and he rarely made even brief eye contact."
"He has difficulty producing answers to questions, making choices between items both with regard to his wants and needs and in response to academic activity. Spontaneous speech consists of rote/routine verbalizations."
"during the adapted physical education assessment, Alex was resistive with an attention span that was short. eye contact was poor. During the physical education observation, Alex was partially participating in the activity with full assist from his aide. His skill level was below peer level. Alex could not follow teacher directives independently."
"In each setting, Alex demonstrated little interest in his peers. He watched objects rather than other students and often walked directly in front of others in effort to retrieve an item of interest. ... During outdoor recess, Alex played in close proximity to the other children but did not interact with them."
Even some of the good things they have to say are sad because they don't exist anymore. He doesn't sing along, he doesn't insert names of animals or animal sounds in Old MacDonald or any other song. He doesn't use his words to rush me along when he wants to do something "now, now""come on, come on". I know he hasn't just totally lost everything, he traded for new skills but it's still hard to read. Then I see a post in my "hidden post" folder from a mom who wants me to share a video of a mom having a conversation with her autistic child. I don't know how many people saw this post from Christmas Day, but I was celebrating my own conversation with my autistic son... Silent Sunday (Silent does not mean Absent). So, I go looking for this video and this is what i find... Mother and Child with autism have a conversation. Go watch the videos so you can see why I'm now fighting jealousy.
I know she worked hard for that conversation, I know it is amazing that he was able to talk to her like that. I know it's definitely worth bragging about and I do not resent her bragging what-so-ever. I am proud for both of them because I know what it took to get that far. They worked hard and earned the bragging rights. I love to hear you guys brag no matter what level your child functions on because I know that your road is no less difficult than ours, every boast leaves me just as proud of your children as I am of my own. I know the pride she had in her boy was just as strong as mine when we made these videos. I know I cannot compare my child to hers because all of our kids are different and all of our kids work harder than anyone I've ever seen to acquire the skills they have.
So, knowing all of this, why do I still have the struggle?
Because you are human. Because you love your children more then anything. For me it is the worry associated with not seeing what we think others have letting it become almost paralyzing. What will our child's future look like if we can not accomplish such simple things. Always remember boasting is the highlight reel of another's life. It isn't the 3 hour tantrum or the self injurious behaviors. I record those too from time to time but I don't share them. We keep doing our best as parents in hopes that before we are gone we can see a glimpse of what their life will be.
ReplyDeleteIt sounds like you're tired. This is a long, hard slog and sometimes you just need to rest. Remember, the schools see and evaluate only one side of your child. You know him. You know his progress, his successes, even if they don't fit on some evaluation form. YOU KNOW.
ReplyDeleteI'm reading a book right now that takes a very different approach to Autism - instead of focusing on disability, it focuses on ability (even when those abilities don't seem like advantages). Different is not the same as worse. Take those evaluations with a large grain of salt. They aren't very palatable otherwise :)