Last night, as I waited for my popcorn to finish popping in the microwave, I started thoroughly reading through Elijah's IEP report which I apparently should have done 48 hours previous to that. Within seconds I was crying.
Let me first say that we truly believe Elijah's teachers and therapists have his best interest in mind. I just don't think they understand the extent of what he has been through, and maybe that is something we should be making more clear to them.
I bolded the parts of the IEP report that caused my eyelids to suffer from major puffiness today..
"Elijah readily enters his classroom and greets teachers. This skill is not observed with peers at this time, even with prompts or assistance. Elijah does not appear bothered by peers but does not readily seek them out or attempt to converse with them. At the time, full support is needed to engage with peers and to sustain any back and forth play, as well as, to share materials with peers. Elijah is able to parallel play next to peers, and at times, will watch his peers play. Not a lot of imitation play has been observed to date. Children Elijah's age should be able to initiate, respond to, and maintain interactions with adults and peers without support for at least short periods of time. Elijah will engage in back and forth play with an adult and has been able to maintain a very short conversation with adults in the room. Conversations with peers has not been observed while at school, even with assistance. This is a skill children his age should be able to do."
"Elijah is showing enjoyment when he enters the classroom. He often needs adult assistance to find an activity to do once he arrives in the classroom. Elijah appears to need time to look at everything in the classroom, but often needs an adult prompt to really do something other than watching his peers. Given his age, one would expect that he should be able to complete this task independently. In addition, classroom staff are not currently observing a lot of functional use of play with common object/toys for a child his age without adult support. Elijah is often observed to play with doors on toys and roll objects in front of his eyes unless assisted by an adult. He is able to transition from activity to activity given extra time. It is not clear whether Elijah truly needs extra processing time with directions or is distracted by the movement of his peers, but it consistently takes him extra time to transition that is not related to his physical abilities. This is also observed with small group activities. Elijah often needs extra time or or prompts from an adult to complete table top activities, especially when there is more than one step involved. Elijah also needs frequent cues to use a louder voice volume during classroom activities, so that he can be heard. Elijah is beginning to show some independence with self care skills. He often needs prompting to try as he tends to wait for an adult to just help him with dressing/undressing. Physically he is able to take off and put on his own coat, and is beginning to take care of his pants (pulling up/down) when toiletting, but he consistently needs extra time to complete the tasks. Elijah is not yet fully toilet trained, however, he is in the process and is having some success at school with this task. Most children who are Elijah's age are independent with the self care tasks expected for school (toilet trained, put on/take off coat..)."
After reading through this, I have to think that whoever wrote this up just does not truly understand what our little boy has endured. If they did understand, they would not be expecting Elijah to be able to be on the same level as his peers.
As I wrote in an email to Elijah's teacher, Elijah is absolutely not going to be on the same level as his peers at this point. He didn't move for the first fourteen months of his life due to lack of energy. He didn't walk until he was three. He didn't talk until he was two-and-a-half. Because of his weak immune system and constant sickness, he spent the first 2+ years of his life around very few children. And because of all of the people who have hurt him (doctors and nurses), it takes him a very long time to form trusting relationships.
If I had read through this IEP report not ever having met Elijah or Dan or myself, I would not draw up a very positive picture in my head of who we are. This report draws a skewed picture of Elijah and I think it makes Dan and me seem like pretty slackerish parents.
Which brings me to the potty training issue. If Elijah is in kindergarten and he is still wearing diapers and has no medical reason to be wearing them, feel free to judge me then. But at the age of three and with his extensive medical history? Do not imply that we should have him potty trained. Thank you.
One comforting thing is that I received two separated emails from fellow heart moms following my original IEP post. They both shared that they have endured similar reports and emotions surrounding recent IEP meetings. We are not alone!
Wouldn't it be wonderful if there were a school for only CHD survivors?
11 comments:
I think it's important to remember that the purpose of the IEP is to assess where he has as compared to what "normal" is.
He has not had a normal developmental experience, and so I don't think there is any expectation that he MUST BE doing these things he is not.
His medical history is important for understanding the reasons behind his developmental delays. The context is important to Elijah as a whole child, it's important to you as a parent, and it's important to understanding and forming reasonable goals for his development... but it's not important to the assessment. The IEP just looks at Elijah where he IS.
It's hard to read something like that and not feel that is a cruel judgment on your child and your ability to parent him appropriately. It's hard to hear that your child is behind, or isn't able to do age-appropriate things.
But what this IEP can give you are some areas to help him develop and improve.
I agree with the previous comment, but as a former special education preschool teacher, I have never seen an IEP that includes evaluative statements such as the ones in Elijah's IEP. I think it would have been completely adequate to simply describe his present level of functioning and to write his goals accordingly. It has been a few years since I have been in a classroom (I now do research on children with language disorders) but, unless special education laws have changed since I was writing IEPs, I think this teacher was a little harsh. You know all the wonderful things about Elijah, so I hope that you will feel better about this in a few days. One thing I think you might want to do is to get some toys at home that are similar to the ones in Elijah's classroom. Then you could teach him some actions and "play scripts" for what to do with the toys. He might then have an easier time selecting and playing appropriately with these same toys at school. Hugs and kisses to Elijah and Samson!
I agree with both of the above...and you KNOW I get it! Remember...they have to justify why he is there and receiving services. *there has to be significant dev. delay* WE know they are total rockstars...this is just something we endure...to get them into great class rooms that will prepare them for "real" school.
I will also add...as a momma, even having older children, it was difficult for me to see how INDEPENDENT they want them to be at school. I would think...she's only 3...she obviously has delays, or she wouldn't be here. What I learned though, is that she rose to the expectation. Before long, she was doing it all...with little or no prompts and I will tell you...that makes you SO PROUD! :0)
BTW...we aren't sure Grace will have a reason that "prevents" her from being potty trained...by kinder-please DON'T judge me! ;0) It is more frustrating to NO ONE...than me...I promise.
Hang in there momma...
Sending you a giant hug, Megs! One of the most difficult aspects of parenting is feeling/dealing with judgment from others. Follow your heart and know that Elijah is a beautiful, amazing, and capable little boy! I agree with the previous post about our children surprising us with what they can accomplish on their own. Hang in there, dear friend, and don't give up!
xo
Deb
You have to be okay hearing the facts about your delayed child, or you won't be able to help him. It is the teachers job to identify the areas in which Elijah is behind, or they can't help him either. They are not saying that he will never catch up, he may. Seeing all the ways in which he is delayed may be hard to take for you. That is okay. It would be hard for me too. Yes, Elijah has been through a lot. And he still has a long way to go. His delays have nothing to do with you as a parent and your abilities to help him. His heart disease is to blame, you are a good mommy, nobody (including his teachers) thinks that you are a slacker parent. IEP's can be hard to swallow. You will do better if you don't see this IEP as an attack, instead see it as information. Focus on the positive things and help Elijah move through the things he has to work on in order to catch up.
With Elijah's medical condition, I think he is doing exceptionally well because he has made great progress in walking and in speech for the past few months.
I am also a early childhood special education teacher. I am sorry to hear about how you felt about the IEP meeting. As the teacher, it is also really difficult for me as well in IEP meetings because I don't like to talk about all of the weaknesses of a child. I make it my duty to help the parents seem them as "needs" more than weaknesses, because each child is a gift and they have strengths and needs just like every other child in the world, typical or not. I feel for you and your family. I hope you can go back and put in bold all of Elijah's strengths!! I know you will find more of those than his needs. God Bless.
Amanda
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