Saturday, November 20, 2010

Kinda wanna cry...

The week was closing with little to no fan-fare, so I didn't expect to be sideswiped by emotion today. But I was. I am. I'll start in order:

I met with the Director of Christian's preschool this week.  Since my (unscheduled) Parent-Teacher conference last week, I have reflected more and more on the inappropriateness of the "concerns" brought to my attention.  A meeting that I thought was supposed to address how Christian has a hard time listening and transitioning from the outdoor playtime back inside and his sometimes quirky communication-style morphed into a meeting where words like "Frontal Lobe Issues", "ADHD", and "Child Psychologist Observation" were thrown around. The cherry on top was the handy "ADHD and your child" brochure that was handed to me at the end...  So, I requested a private and confidential meeting with the director of the school to discuss it.  The first problem was that the director had bad information. She was told that I brought up a concern about ADHD and requested that I have a child psychologist come and observe Christian in class ! (???) Um, No. I was the first to say out loud the word "ADD?", only after "Frontal lobe issues" and "Attention issues" were placed on the table.  I AGREED to an observation, but was NOT the one to suggest it.  Once those facts were cleared up and other details were filled in (i.e. the handy ADHD brochure that the director knew nothing about...and dropped her head to her hands when she did) I made clear that my concern is that Christian is not labelled as anything at this early age, so that these words do not affect his self-esteem.  The director could not agree more.  I didn't get a huge sense of relief out of the meeting, but I did feel that the director has called her attention to it and we'll re-assess where we stand after I have some professional opinions in the next couple of weeks. 

On Friday, I made my way back to Club 21, a resource for families and children with Down syndrome.  Friday mornings are the "First Steps" program, which is a playgroup for babies 0-3 with Down syndrome.  It's a great place for the Moms and Dads to connect to others also and it has been extremely helpful for me.  Due to a jam-packed schedule, I had been unable to attend with Elijah for about 2 and a half months.  I was excited to see everyone and managed to get myself there despite dirty diapers, preschool drop off and a lack of cream for a coffee... Each week Club 21 provides a professional of some sort to be a resource for us. Sometimes it's a Physical Therapist, sometimes an Occupational Therapist, even a Sign Language Instructor.  This week introduced me to someone I have sort of "met" before...See this post for my online run-in with her.  She is basically an outspoken Mom with a teenage son with Down syndrome who rubbed me the wrong way while I was pregnant (and the pregnancy hormones weren't helping either...), and although I wasn't formally introduced to her title, I think she's also an Occupational Therapist?  Anyway, she was playing with Elijah and doing some "OT while she was at it", when she said, "He's still pretty weak, isn't he?" I remarked that yes, the PT who evaluated him said he was moderately low-tone (which is considerably lower than a typically developing baby and lower than some who are also affected by low muscle tone.) Then she said, "He reminds me of my Gabriel.  Luckily they didn't say anything to me when he was a baby, but when he got older, our PT finally admitted that he had been the lowest tone baby he'd ever seen!"   (I'm thinking, Does Elijah remind you of your son because he seems so low toned, or were those two separate thoughts: He reminds you of your son. Your son had very low tone. ??)  That added insult to some injury when I saw how tiny Elijah looked even in comparison to another baby with Down syndrome only one month older than him, who was also moving around significantly more than Elijah is.  It didn't bum me out a whole lot, but it was one of those things that I "took in".  I took it in and filed it away, and it probably wouldn't have bothered me, except that today got factored into the mix.

Today was a Birthday Party Extravaganza day. Two parties in one day. From bounce house Heaven to Batman silliness, we trekked the city for a couple of Christian's preschool friends. All went well at our first party. It was unstructured, pure-fun play (personally, the kind I think is necessary for 3 and 4 year olds) with a few of Christian's classmates from school.  I was already friends with the Birthday girl's Mom (even prior to the start of preschool), so it was a fun one to be at.  I did notice that a few of the kids, (mostly girls) seemed to already have pretty tightly bonded friendships. It was the first time that a flash from the preschool meeting came to mind...(where I nearly fell off my chair from shock at the question, "Does Christian have any friends?")  In witnessing the cute little girls holding hands and wanting to run to each play station together, I began to question if maybe Christian hadn't yet formed the kinds of friendships the teachers were talking about.  However, Christian had an absolute blast and seemed comfortable and happy, which seemed to be the most important thing.  We headed back to our end of town and dropped off Daddy and Baby Elijah, so Christian and I could skip over to the Batman party at My Gym. This party was for a boy who had been in the same Mommy and Me class with Christian 2 years ago.  He started a formal preschool class last year and is not in Christian's class this year.  I had planned to blow off this party, but the boy's Mom cornered me on the way out one day: Is Christian able to come to the party?  I tried a weak excuse but she caught me off guard and I ended up agreeing to bring him. Besides, Christian LOVES Batman, so I thought Why not? 
Case and point:


We got to the party and as I looked around, I realized that Christian didn't know almost anyone.  It had been over a year since Christian had seen or played with the Birthday Boy, and the only other person he'd known was a boy named Jason from his Mommy and Me class last year.  Jason's Mom kind of unravels me in a not-so-good way. (Click here for the moment that immediately changed my relationship with her.)  In a nut-shell, Jason's Mom terminated a pregnancy based on a Down syndrome diagnosis. No other extenuating circumstances, just the Ds.  It's hard not to see it as a decision based in fear and ignorance.  I try hard to see that each person is entitled to their "choice", but when the choice feels like it somehow invalidates my son's existence, it's hard. (Notice I said "feels like" and not that it "does" invalidate anything about him.) Anyway, ever since my conversation with Jason's Mom on the playground last year, she has become my biggest fan.  She goes out of her way to say hello, is always very friendly and even recently suggested that we should get the boys together for a playdate.  I "agreed", figuring I could blow it off without notice, since our boys aren't even in the same class. However, life keeps bringing us together.  The day I was snack Mom last week, she was snack Mom for her son's class (right next door). We show up to the Batman party and there she is with her husband and 3 month old baby girl.  In the course of talking with her, I found out that her 3 month old baby girl already weighs more than Elijah does at 7 months.  Then, I watch as Christian acts like a weirdo through out the entire party. Hands in his mouth, anti-social behavior....sigh. He didn't really know anyone, but still...I wonder again about what's happening at preschool that I haven't witnessed.  I'm not going to allow myself to stress ANYMORE about what's going on with Christian.  It is pointless. I will follow up based on the parent-teacher conference I had, and then call it a day.

Each situation on it's own wasn't much at all, but by the time I got home from the Batman party today, I wanted to cry. And have.  a little. I know my boys will be fine.  Life won't be without challenges- it never is.  Every once in awhile however, a little weight needs to be lifted and, for me, a good cry can do that.  I haven't had a good cry about it all yet. Maybe the moment will pass and I won't get the full release, but even a "Kinda wanna cry" moment can alleviate enough of the emotion so that I can pick myself up, brush it off, and move onto the things that really need my the glass of wine and box of brownies that are calling my name...

8 comments: said...

Hugs! One of the hardest lessons I've had to learn when dealing with Liam's autism is that making comparisons to typically developing kids or even other special needs kids only leads to grief for one of us, so I've really tried to stop...
It truly doesn't help on days where others feel the need to do the comparisons for me...
Glad you were able to go home and let some of your emotions out... hope tomorrow is a better day!

P said...

If the disturbances to your healthy amazing aura were not so frequent and trying, you would not even notice them. That's all! You are learning and sharing for all of us cause you can express complicated unresolved emotions and situations so succinctly.

Is Christian very athletic? The preschool boys who like sports pretty much ONLY do sports in my limited experience with my two above preschool aged GIRLS. Connect him with another physically-capable boy and consider switching to a preschool that has LOTS of free choice time and a basketball net and bikes if you must.

I'm assuming dancer mom and super athletic dad means he is sporty. I have also seen two different boys waltzing with one girl repeatedly (one was my daughter, the other my older daughters best buddy).

Get checked but it's FINE to take time to bond the whole first half or year of preschool I say. You have time

My son has low tone, very low tone as does his five year old typical sister and MOM (me) I'm quite certain. He was under ten pounds until about 7 or 8 months. I know I keeping track in my head at 6 months and it was NOT soon after that he hit that milestone.

He's walking enough for me and signing TONS at 27 months.

P said...

We can't fight the comparing, or at least I can't but we can use the data to decide what areas to focus on.

Bonnie@TheFragileXFiles said...

This is so well said, I love your blog because you express yourself so very well, and it's important that others know what it feels like to be the mom of the kids who doesn't have friends yet, and the mom of the kid who doesn't look or act or weigh the same as the others.

It seems to me that maybe you are serving as an example of what kind of mom Jason's mom COULD have been. A mother of a Down's child (you) was brought into her life for a reason.....thank you for sharing your feelings here.

Chris P-M said...

I sure hope you had that glass of wine and those brownies! There have been plenty of days where I've poured myself a glass of wine in the middle of the day, just because I COULD. Somehow it made me feel better doing something that seemed to pamper myself.

My son has always had (and continues to have) incredibly poor muscle tone. It's just how he is....super floppy (we sometimes call him the "flopmeister"). I continue to see other kids on a daily basis that seem light-years above my kiddo developmentally.'s impossible to NOT notice these things sometimes, but I TRY to focus on Kai's unique gains and celebrate them.

BTW, my hubby is a school psychologist and does a lot with special ed stuff...If you ever need to run any questions
by someone who has experience with this kind of stuff(and isn't directly involved) feel free to e-mail me. He's talked with lots of parents and families and the ADHD thing comes up quite frequently in his line of work.

Hang in there!

MEMEME said...

I am that mom. I am so sorry. I don't want to be that mom. I only meant to comment to you about Low Tone because it was a big deal to me and I wish I had known more when he was a baby. I wish someone had explained to me that these first developmental milestones are building blocks for the future. I am deeply concerned that in LA we don't have the resources or progressive attitudes that are evident in other areas of the country. I want the best for people with Ds. In fact I wish Ds could be renamed low tone. It affects everything. I am not an OT but I do automatically go into "play with a purpose" mode and I guess I cam across as over zealous and I am truly sorry. Please forgive my lack of consideration. I was filling in that day and I was just so excited to be there. I am really really sad that I had that affect on you and if there is a way I could take it back I would.
I guess I have also offended you in the past and again I am so sorry. Your baby is beautiful, perfect, unique and full of possibilities. Again, please accept my deepest most sincere apologies for anything that I have said that may have hurt your feelings at Club 21 or in the past. And please come back to Club 21. Obviously I don't belong there and I will graciously decline substituting. I guess I have officially become that old mother who is out of touch with the younger babies. Again, please accept my apologies. I am so sad about this.Peace to you,
Rachel Douglas

Jen Currier said...

I'm sorry that I didn't know you well enough to discuss this directly with you. If I did, I would have probably told you that a statement you made freaked me out and would have asked you to clarify. So I'm sure it was uncomfortable to see my feelings about it being worked out in a more public forum. I think that you have MUCH to offer as a Mom with an older have been down a path before me and have the hindsight that is always clearer than the path in front of you. It is hard for me to cope with ideas or statements that I have no control over: Elijah's level of low tone or how the "system" works in LA (believe me: for every 5 of my phone calls, I get one returned. I am relentless and yet it is a system. So I do the very best I can. Which is all I can do.) I do know that these first developmental milestones are building blocks for the future...but that idea is as stressful as it is liberating. It is a constant balancing act between pushing and pushing for what I think Elijah needs, and relaxing in the knowledge that I can only do as much as I can do and eventually Elijah will crawl (in some form)& he will walk.

I truly thought that you were an OT because of your "play with purpose" mode, and I was not offended by it at all. Just confused...I should have asked, but I was torn between the conversation with you and with the new couple whose baby has a similar eye condition. I hope that you do not stop filling in at Club 21 because of this- you have more to offer than you took away. Strangely enough, I ended up being encouraged by the fact that your son "had the lowest tone of any baby your PT had ever seen", because later that same night (while volunteering some time on a charity fundraiser) I saw a picture of your handsome son---doing what looked like a "Canon Ball" into a pool. I thought, "Well...he managed to overcome the low tone enough to canon ball into a pool, so some day Elijah will be strong enough to do that too!"

As for our "past"...Yes, I was offended in the past, but honestly you weren't doing anything "wrong"- even though I was affected by it. You had a strong opinion of a local organization and my hackles went up because as an expectant Mom, that organization had been my ONLY lifeline. It was my only source of connecting with other parents, and at that time it was the parents and families that gave me strength and hope. I commented to you about how your opinions affected me and you wrote me a very nice letter in response. I get it. I even "got it" then, and you are more than entitled to your opinions. I was just in a very vulnerable place in all of this and I couldn't deal with the flaws of an organization that was feeling like my only connection to the world of Ds.

I hope my response to you now gives you a more rounded picture of what affected me, instead of just my "venting" on my blog in a moment where I was feeling very weepy. I hold no ill feelings toward fact, I'm quite in awe of your honest and humble response to my post. I wish you the best and hope to meet your son one day, so that I can get that hopeful glimpse of what the future may hold.

Jen Currier said...
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