Team Elijah and the Twilight Zone

It was a beautiful day.  A perfect close to a jam packed, slightly "Twilight Zone" tainted week.  Team Elijah: a group of 21 (How perfect! It is the extra 21st chromosome that makes Down syndrome...) of my family members and friends who pulled together last minute to support our participation in this year's Buddy Walk put on by the Down Syndrome Association of Los Angeles (DSALA) for the benefit of the National Down Syndrome Society (NDSS).  In a matter of 10 days, we pulled together "Team Elijah" with a final count of raised funds at close to $2900!!!  We all got excited and put on our competitive faces, and said, "Next year: Signs, T-shirts, a float with fireworks and top prize for most donations raised!!" We got into it.  :) 
















It wasn't weird at all, by the way. I was a little anxiety-ridden that this event would somehow overwhelm me and solidify my role in a community that was hoisted onto my life. However, it was cool. I saw some pretty hip looking young adults with Down syndrome and I liked the new image I was able to file away...not just the round-faced, bowl hair-cut one that was somehow lodged into my brain. There were babies and kids with Down syndrome everywhere, and with them were large groups of people who love them. No one was looking at anyone funny and no one seemed out of place. It was a laid back event. No one was competing to finish a race- we just strolled along (the maybe quarter-of-a-mile "walk") enjoying the gorgeous weather and admiring the creative signs and team-gear that people were sporting. After we completed the walk, we let the kids play on the playground there and ride the ponies.  We kissed some of our friends goodbye, but I needed a final celebratory nod to the Buddy Walk, so I said, "I feel like I need a margarita." Charles replied, "There's a Mexican place around the corner."  (Reason #478 why I love my husband: He catalogues away just the right information when you need it.)  So everyone remaining agreed that a margarita was in order and we shuttled around the corner, grabbed our table for 13 and enjoyed.  I'm welling up now thinking about these people in my life and I want to take a minute to say a special thanks to: My parents who are always the first to say, Where? When?; my sister and her family, who I didn't even think could make it today, but who bring the love and the fun every time; my best friend, Denise (also known as KB), and her daughter and Mom, who also never misses a beat- What do you need? How can I help?; One of my oldest (in time-known) friends, Marie, her rockin-amazing hubby Lewis, and their adorable little guy Theo, who personally helped our fund raising efforts significantly (without being asked!); my good friend Mel, who always makes me laugh and has one of the purest, but also most down-to-earth hearts I've known; and my newest friend Kathy and her family- the more I get to know her, the more I adore her!  I also want to say a huge thank you to all who donated in honor of Elijah- you guys all have such big hearts and I am grateful to know each and every one of you!  As I said, It was a beautiful day and right now I'm feelin' the love.

This was the week that we also had Elijah's first Physical Therapy evaluation.  The therapist was amazing!!  She was relaxed and friendly, but incredibly knowledgeable.  She told me that Elijah is doing great- he has moderately low muscle tone and thus has quite a bit of weakness, but that he is really doing great with his head and neck control.  Most of all, she said that the fact that he is so engaged and motivated is the biggest factor in how well a child does with early intervention therapy.  She believes he will do very well and will be capable of quite a lot!  It was a very encouraging session- not to mention the fact that she showed me a couple of ways to assist Elijah, without doing it for him, that were instantly creating a desired result! THIS. is. why. I. wanted. a. professional. So, now we're back in the waiting game for the Occupational Therapy (OT) and Physical Therapy (PT) recommendations to go through, which will establish what our therapy schedule consists of.  Wonder how many calls and emails I'll have to make to get everything finalized?...

Then, there was Friday.   An unscheduled parent-teacher conference at Christian's preschool.  Let me fill you in on the back story: The day after Halloween, when I went to pick Christian up from preschool, one of his teachers said, "Christian had a rough day today."  I think I blankly blinked at her and said, "Ummm...yeah.  Yesterday was a pretty big day."  Then, because it seemed like a very strange comment to make on a day that I would guess would be hard on a lot of kids, I said, "Did he hit anyone?" No. "Push anyone?" No. She said, "He just had a lot of trouble listening today."  So...again, because I thought it an odd comment on this particular day, I said, "Is this an isolated instance or has this been happening and you're just now telling me about it?"  She said, "Well, it's been happening more and more recently."  I said, "Ok.  Well, listening is something we struggle with a little at home too. Do you have any suggestions?"  Then we somehow got distracted and the conversation was never completed.  I later received an email from her apologizing for our interrupted conversation, along with an invitation to speak with her and the other teacher anytime.  We decided we would chat Friday while I allowed Christian to stay for after-care.  When I dropped Christian off in the morning on Friday, the teacher confirmed that we would meet and said, "I was also thinking about asking Mrs. Carson to come and speak with us."  (Mrs. Carson, (not her real name), had been the Mommy and Me teacher we had for two years.  She has become somewhat of a friend, but she is also the one who had me COMPLETELY freaked out about Christian's speech.  She has been convinced that there is 'something going on' with Christian and when I texted her to say that his speech evaluation was great and that he had no issues, she was disbelieving and asked, Did they check this? Did they check that? (The answers were yes.)   However, since Mrs. Carson has given us great discipline tactics in the past, I responded that that would be great (although it seemed a little strange, considering that she is not his teacher, not in his classroom and has not observed his behavior in about 6 months...)  I arrived before Mrs. Carson did and started speaking with the teachers. 

The summary of my conversation with Christian's teacher prior to Mrs. Carson's arrival was confusing at best.  They brought up issues and circumstances that all seemed SO typical in the life of a three and a half year old.  I kept trying to stay focused to see where they were going with it all, but I really wanted to ask, AND??...  Then Mrs. Carson came in.  The conversation took a slightly different turn.  It quickly veered into processing problems and attention issues.  I told her that I really didn't think there was any sort of processing issue based on what I observe with him.  As I thought about things, I conceded that it's POSSIBLE there is some type of attention issue...but honestly, I thought this was still reaching a bit.  However, Charles and I both think that he may be an undiagnosed adult with ADD and I mentioned this to them.  As soon as I said ADD, it opened up the conversation more.  Eventually, Mrs. Casey pulled out a brochure she said that she just happened to have in her purse, entitled "ADHD and your child".   To be honest, I felt a little bit like I was in the Twilight Zone.  I haven't noticed anything with Christian that seems outside the norm of how three and a half year-olds act.  I suppose it's possible that symptoms would only present themselves in a larger, more structured group setting, but I kinda think we might be jumping the gun here even if down the line we notice bigger attention issues.  I left pretty dazed and upset. Feeling like Christian, along with Elijah, might also have to face challenges in his life.  Then, I got a little perspective.  I spent the evening with a fun group of Mommy friends at a Book Club meeting- some who have a great history with Christian.  After a good night sleep, I had more perspective. The more I was away from that conversation, and really, truly looked and listened to what Christian was doing, the less I thought there was anything of great concern.  Honestly, if they end up being right down the line, I've seen how Charles (without a diagnosis and any kind of treatment) has been able to adapt in his life.  He certainly has no trouble holding a conversation, making friends, or doing his life. (Perhaps there could have/ would have been ways that he would have felt better about his "process", but it is not my desire to psychoanalyze my husband.)  So, now in hindsight, I can't shake the feeling that Mrs. Carson doesn't want to be wrong.  She suspected a language problem (could be processing, she said) but when a speech therapist said no, she is pursuing a different avenue (the I-knew-something-was-up, avenue).  I can't shake the thought that maybe she mentioned a possible problem to Christian's teachers and so now they are hyper-aware anytime he does anything... Maybe not, but it all just doesn't seem to fit.  My experience when something doesn't "fit" has usually been that something else is going on. 

What I intend to do now, is threefold: 1) Based on Mrs. Carson's recommendation to have a child psychologist come into the classroom and evaluate him, I am going to have someone come and observe Christian in the classroom.  It is not initially going to be a child psychologist, but will be a good friend who has a degree in child development, years of experience in the classroom and a personal knowledge of what kind of kid Christian is. She'll know if he's having an off day, or if there really is something going on.  Plus, since she has the teaching background, so she'll also be able to evaluate the teaching style in the classroom, which is good knowledge for me.  2) I am going to speak with the director of the school.  I intend to tell her that I am concerned that words like ADD, ADHD, and processing problems are being thrown around so early into the year- especially when the instances sited seem incredibly typical of preschoolers (if he was never sitting down, constantly in motion, a social outcast, and a danger to himself or others, I could see a necessity to intervene so early).  While it may be nice for the teachers to have a neatly wrapped package of diagnosis, I am concerned about pigeon-holing my son so early in life, and hope that instead the teachers can just work on meeting him where he's at...  3) If I feel for any reason that Christian is not going to get a fair shake at preschool, I will pull him out of this school.  What's most important to me is that Christian is happy, confident and given a chance to learn freely and at his own pace in preschool- not micro-examined on a daily basis. 

I believe that Christian's teachers and Mrs. Carson have the very best intentions.  I believe that they care for my son.  But, I also know that people's own "stuff" and "issues" get thrown into the mix.  I don't want to be the parent who dismisses any concerns with an adamant, "My kid is FINE!!", but I also want Christian to know that I have his back.  And just because some preschool teacher (not an expert) thinks something might be up, doesn't mean that it IS. 

So. I am through obsessing.  I spent a beautiful day with my family and friends, where Christian listened to directions, was cooperative and engaged in adorable conversation, including this:
(Bathroom stall) He hears someone enter the stall next to him...
Hello??... (no answer.)
What are you? (no answer)
A girl or a boy? (no answer)
What is your name? (no answer. So, I say, Honey, some people don't like to talk when they are going potty.) 
(He says, louder,) What is your NAME???!! 
(Finally the stall neighbor responds) Is she talking to me?  I say with a chuckle, Yes. (I don't correct the pronoun.)
My name is Maria. What is your name?
Christian.  Are you a Mommy?
No. I'm not a Mommy.
Oh.
(Neighbor's toilet flushes.) Bye-bye, Christian.
Bye!