Fits and starts

Luke and Will tracked out from their schools yesterday. It is officially the end of the year. Because they are in a year round program instead of a traditional school program, they have the month of July off, and then head back in August for their new school year.

Because it is the end of the school year, we got a copy of their IEP progress reports (special needs equivalent of the report card) yesterday. All in all, the results are better than in quarters past. This could be due to having a year under their belts in school, or it could be due to the fact that we rewrote their goals in March, and the new goals are more achievable than the ones they were being judged against before.

I was trying to read the report objectively and hold off on thoughts or judgement, but two of Luke's goal reports made me chuckle immediately.

Annual Goal: Use his words and appropriately respond to social cues (non-verbal and verbal) from others to take turns, share materials, and solve conflicts with peers.

Comment: Luke continues to need adult support to solve conflicts. He tells peers when he doesn't like something that they're doing or to stop snatching toys, but his peers don't always listen to his words and an adult is needed to mediate the situation. Luke also needs multiple reminders not to snatch toys from others.

When Luke gets very frustrated (usually at Matthew at home), he gets very huffy and puffy. Rather than blow the house down, he says very loudly and in a high pitched voice "I don't like that, don't do it again." I think this is a very good statement, and it should get his point across. However when Luke's upset, he says that statement very quickly. So it comes out something like Alvin of the Chipmunks saying "Idon'tlikethatdon'tdoitagain." I can imagine Luke doing this at school, and the kids he is fighting with stopping what they are doing, looking confused and saying "huh?"

Annual Goal: Stay in his designated center/seat, 4 out of 5 times.

Comment: Luke and others are staying out of closed centers and staying in their assigned seats at circle time. We've been eating in the cafeteria at breakfast and Luke often copies others running down the aisle and needs reminders that once he's finished, he sits and waits patiently for others. Most days this is not an issue because Luke is such a good eater and one of the last to finish his meal.

I had to read and re-read this comment. Are they talking about my son? Good eater? Umm... nope. Not at home! I guess he eats so well at school that he isn't hungry when he gets home! My other thought was that if they could get him to sit still and wait for everyone to be done and also avoid the temptation/peer pressure of acting out like the other kids, I am going to have the most well-mannered, best-behaved 4 year old boy on the planet.

Will's IEP progress reports are always harder for me to read objectively. I tend to get emotional, offended, angry... but since we rewrote the goals in March with Will's teacher (who knows him very well), I find myself much less upset. However it still isn't easy.

I want so much for Will, and I want him to do as well as he can in all of life's arenas. I've talked to other parents of children with cerebral palsy as severe as Will's, and it always seems as though their children have these breakthrough times where they progress in many areas. Then there are other times when they just seem stymied. Fits and starts.

Will is definitely making progress in some areas. In previous quarters, his crying was interrupting the progress of the class and he was unable to participate in group activities. He continues to eat better than he ever has, and is eating well for more than just a couple of people.

Annual Goal: Using calming techniques, Will will be able to stop crying and calm himself when he is upset 2 out of 5 times.

Comment: Will is actually getting better at calming himself while he is crying. I will sometimes tell him to listen that everyone else is quiet, and he will stop and listen.

Annual Goal: Will will bring a loaded spoon to his mouth after hand-over-hand scooping and initiation of the hand-to-mouth motion 2 out of 5 trials using adaptive measure as needed.

Comment: We have been working on this goal at lunch. Will is motivated to feed himself. When he is able to relax, he does a much better job. He requires fading hand-over-hand for spoon-to-mouth movement to held decrease spillage.

Over the past quarter, it seems as though Will's progress in the arenas of physical and verbal development have slowed, however.

Annual Goal: Will will verbally use words within the classroom environment with mild cues from staff on 3/5 occasions over 3 consecutive days.

Comment: This quarter, Will has not demonstrated the use of new words. He has not imitated new words as easily, although at times he will attempt a word approximation. He will imitate familiar words (dada, mama, etc).

Annual Goal: The student will walk with minimal assistance in a gait trainer 50% of the time.

Comment: Will has made minimal progress regarding this ambulation goal this past marking quarter. On one occasion he was able to partially flex his right hip/knee with both verbal/tactile cues while being positioned in the Pony gait trainer.

Don't misunderstand. I am not disappointed in Will. Not one bit. We all cheer his progress. We all understand that there will be set backs. And we realize that progress cannot be made in all areas at all times. All children progress in different development areas at different speeds.

I think where I am going with this is that I really hope and pray and push that Will progresses to the point where he can express himself in some manner, and can move around with some amount of independence. His life has already been hard, and I'd like it to get easier for him. Some ability to walk and talk would make his life less frustrating. Why should everything have to be a fight?