Words.

This beautiful weather feels incredible! Finally! We have been spending a lot of time outdoors and it has felt amazing. I brought Sammy to Kohls tonight to do a little summer clothes shopping and he was SO excited to pick out summer shirts. "MOMMY! It's finally SUMMER! I can wear hot summer clothes!" He has refused to wear anything but shorts and t-shirts (only shorts/short-sleeved jammies, too) for the past week. No socks. Just crocs and plain ol' summer clothes. I love it. We're in summer mode.

I'm going to TRY to make this quick. I got a call back from Dr. M today, E's awesome neuropsychologist. He took 45+ minutes to chat on the phone, which I appreciate immensely. He didn't understand why the school social worker had 1) been so negative about getting Elijah labeled with ASD through the school system and 2) why she had expressed her opinion on the matter to me at all. According to him, it is typically much easier to get an ASD label through school than it is in the medical world. Basically all of the testing on Elijah has been completed, so minimal work on their end would need to be done to get things going. He suggested that I just make sure a date is set to do the ASD testing, whether that be this year (not likely) or right away in the fall. In reality, the label doesn't matter. As long as he has an IEP and his specific needs are spelled out, that should cover him. We need to educate next year's teachers about NLD and provide him with the best classroom experience possible. Stated simply: We need for his caregivers to understand Elijah!

I asked Dr. M for some advice on interacting with Elijah at home. I gave him a few examples of issues that happen repeatedly (multiple times/day) and that have been issues for years....with no real learning occurring. He explained again to me that Elijah can't always make connections. Even if he can repeat a connection back to us, that doesn't mean he truly understands it. So it's not a matter of teaching him a lesson repeatedly in hopes that he will eventually "get" it. Instead, we need to teach him skill development. Example: when he becomes frustrated with Sammy (when Sammy steals a toy or interrupts his play), he gets very frustrated and either hits him or head butts him or screams at him (or all of the above). Dr. M suggested teaching him other ways to deal with frustration and repeating that until it becomes a habit. Tonight I did role-playing with him. I pretended to be Sammy, stealing a toy. I told him that if he felt upset or frustrated that he needs to take a step back, stomp his feet, call for Mommy and get help. THEN....if he did all of that appropriately, he'd be rewarded with computer time or a treat of some sort. We did this a handful of times and he was loving it. Then before bed, Sammy came up and swiped a toy right out of E's hands. Thankfully I was right there and prompted E. "Elijah! This is frustrating! What do you need to do?" He did exactly what we had rehearsed downstairs. He took a step back, stomped his feet and asked me to help. We will need to re-enact these sorts of scenarios repeatedly until he learns them.

I asked Dr. M about Elijah having such incredible visual recall when I asked him about our trailer at the dropzone. He said that made total sense, as long as the trailer is a positive thing for him. As long as E is interested in something and truly enjoys it, he is going to be able to have good visual recall. He told me that if I asked him to recall the trailer in a different way, such as, "If you are standing by the bunk beds, what is behind you?" he would have a much more difficult time. It is so interesting and challenging learning to think the way he does. This is going to be such a process, but we're up for it! Anything for our boys!

Over the past few weeks we have stressed even more than usual the importance of WRITING things out. We bought a THIRD white board for our home. If we had a money tree and I could buy anything I wanted, I'd buy an entire white board wall for our home because Elijah loves them so much. He will sit and do endless hours of math problems, spelling tests and even writing poetry on white boards. We bought an extra large one today for this reason and he immediately sat down and wrote a poem, accompanied by a drawing. He read the entire thing to me (twice) and was so proud of his work. This is something that he could not express in any other way at this point.

The next three days are filled with crazy work for me. A day in Cannon Falls and two weddings, whew. Sunday will be a day of rest together and then Dan leaves for a 6-day DC trip. Life is crazy! Thank you so much for taking the time to check in! Wishing you all a great rest of your week.

IEP aftermath: tears

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?