Letter to Eli, 23 Months

Dear Eli,

What a month this has been!

In mid-December you were given a developmental screening. We were expecting it to show a speech delay but were shocked by the degree of delay they say you have. The good thing is that it qualifies you for some free services in addition to the therapy that the insurance has approved. We have full confidence you will do just fine in the speech department given time, and the extra help is certainly welcome. Already you are showing improvement. At the time of the screening you weren’t saying much verbally other than “Mama” (when crying) and a couple of words you would repeat if asked to. Now you are saying “Mama” all the time and have added to that more, sopa, agua, dog, tea, Dada, ball, go, apple, Elmo, in, ‘Acki (Aunt Jacki) and a couple others that I just can’t think of right now. As of yet you’ve only had 2 speech therapy sessions, so I think a big part of it is just that you are becoming more ready to speak.

What we didn’t realize before the screening was that some of your behaviors aren’t just you being Eli, but rather indicate a Sensory Processing Disorder. For you it is mainly the vestibular system that is affected, although there are other non-motion things going on with you as well.

This actually helps to explain a lot… especially about why you are ALWAYS moving. As it has been explained to me you don’t have a sense of where your body is located in space unless you are receiving the stimulation of movement. Ironically, for your body to feel at rest it has to be moving. It explains why when you were a little baby you couldn’t sleep unless you were in the swing, and later why you would start rolling across the bed like a little tumbleweed waking up on your hands and knees crying 3 or 4 times every night. (We are thankful you don’t do that anymore.)

You beg to take a (cold) bath at least a couple of times a day. Once is usually the limit. I don't look forward to the day when you make the connection between getting dirty and bathing. I shudder to think of what you will do then. 🙂

Other ways you are affected are that you only want to be bathed in cold water. We’ve slowly gotten you to the point where you will tolerate it being luke warm. You also aren’t tolerating a lot of different textures of food, and often end up coughing when you try to drink fluids or when eating small grains. The swallow study you had done this past month showed that your esophagus works fine, so the problem has been attributed to the Sensory Processing Disorder.  In addition to the group and individual speech therapy you’ll be receiving you will also have group and individual occupational therapy. We are all of the sudden very busy, but I’m so glad that there is help available for you.

Adding the final touches to Mama's crudely drawn sidewalk pig.

You continue to love music, instruments and performances. You love to hear the sound of a crowd cheering and applauding. Sometimes when you are in a fussy mood it helps for us to turn on a game show in the background because when you here the applause you usually can’t help yourself but to cheer and applaud along.

You have had an on-going love affair with your daddy’s old guitar for many months now. The headstock is now completely shattered from all of the times you have dropped it on the floor. Let’s face it, it’s a lot of guitar for a little guy. It has been held together with duct tape, but the few remaining strings are becoming less and less strum-able.

Thankfully my Aunt Sylvia and Uncle Dave sent you a new, toddler-sized guitar. The day it arrived you spent much of the day carrying it around in a big bear hug when you weren’t strumming it. I caught you kissing it a time or two as well. Unfortunately I haven’t been able to get a non-blurry picture of you with it yet.

You also are drawn to the microphones and drum equipment at church. It is so cute to see you in your element happily exploring these things after service. Less cute is our inevitably loud exit as no amount of time with your beloved instruments is ever enough. Your howls and shrieks of frustrated disappointment are most likely heard at least a block away.

Here you are pointing inside your cup, exclaiming delightedly "TEA!"

Your love of tea continues to grow, much to my delight. You like to play tea party, in which you serve me pretend cup after cup of hot(!) tea, poured with all sorts of burbling water sound effects. In return, I am expected to share any cup of my (real) tea with you. I pour a little in a small cup and you impatiently wait for it to cool. This practice has led to a great improvement in your ability to drink from a cup without choking. The tea we have at home is all caffeine free but when we are out I like to get an occasional soy chai latte. I order it weak and you enjoy drinking the cold last half inch in the bottom of the cup so much that I figure whatever small amount of caffeine there is won’t kill you. The looks we get from other people are really something though, as it seems like I am giving my toddler coffee! This appearance is then only underscored by your normal extremely active behavior! (For the record I’ve never noticed any change in behavior after you’ve enjoyed the last of my tea.)

Riding on the firetruck at the park.

There are so many things you enjoy doing these days, but going to Barnes & Noble takes the cake! Now if we even drive on the street that glorious store is located on you begin frantically signing “book” long before the store is even in sight. At night your daddy and I like to wind down by watching a bit of Masterpiece Theater. He always mutes the B&N commercial at the beginning to prevent you from getting the idea that you have to go there RIGHT NOW. They have now removed the Lego table, but there are so many other things you love to do there I’m not sure you have really even noticed.

You had to test drive EVERY nook! You were so careful to replace each one carefully on the display holder without me even having to say anything. I was amazed (and hovered just the same.).

You usually make a bee line for the Music and DVD section immediately upon entering the store, (although today you were momentarily distracted by those wonderful nooks.) As soon as it is in sight you break into a canter, chirping “Elmo!”, Elmo!” Once inside the music section you gravitate to the DVDs looking for the Baby Einstein and Sesame Street displays.

These DVDs are then taken one by one to the scanner to be scanned. This is very serious work.

With each satisfying beep you abandon  that DVD and look for another to scan.You are actually pretty good about returning them to the place you found them, but you sometimes need a little encouragement. The sales people who work in that section  now recognize you and even seem to enjoy your visits.

Leave it to you to find the guitar!

Then it’s off to the children’s section, which, after all, is where Elmo lives.

You especially like the books in the vehicle area that have all sorts of sound effect buttons on them.

At some point it is time to go to the cafe, and as Daddy is usually your shadow at Barnes & Noble, you find Mama there with a cup of delicious tea and hopefully a coconut macaroon! In fact, the best way to get you to leave the children’s section sans tantrum is to suggest, “Eli, do you want some tea?”

Mmmmm... TEA!

Best of all, Barnes & Noble is a place where we occasionally meet up with people who love you!

Yes, Barnes & Nobel is truly your idea of heaven on earth!

I can’t wait to see what this last month of your second year will bring. I love you so very, very very much!

Mama

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Developmental Screening

Mary Hurlbut Photography

Eli had a developmental screening yesterday to see what is going on with his speech delay. I left feeling rather stunned. I know he isn’t where the pediatrician hoped he would be by now in the speech department, but I didn’t realize the problem was this extensive. I have to wait a couple weeks for the written report and besides being stunned, there was a lot of information being thrown at me in rapid succession. What I came away with was this. They say that in expressive language he scored at a 6 to 9 month old level. In the receptive language category he did slightly better, coming in at 12 to 15 months.

I never had any concerns about his abilities in other areas, but the examiners detected sensory problems. They said this is probably why his is so extremely active, rough and constantly moving, something about a lack of body awareness. They think there may be a swallowing problem behind his recent extremely picky eating. Not sure I completely follow what they were saying. I have a lot of reading to do. Of course having the actual report will help, but two weeks is a long time to wait when you’ve been given this sort of news.

Mary Hurlbut Photography

There were concerns about his eyes not working in sync with each other, so we’ll be visiting an opthamologist. And we are getting in to see an audiologist tomorrow to rule out any hearing issues, especially since I inherited moderate nerve deafness from my mother.

The recommendations yesterday included both one-on-one and group speech therapy as well as twice weekly occupational therapy.

They also recommended Eli and I try going gluten-free for a month as gluten sensitivities often go hand-in-hand with dairy allergies. It would also explain the craving he seems to have for all things made of wheat. The holidays and traveling are difficult enough when avoiding cow’s milk in all its forms. I’ll wait until the new year to do this experiment, or I’ll feel just too overwhelmed.

I’ve always felt confident about my decision to teach Eli Baby Signs, but I have received some criticism along the way from people who think I’ve caused his speech delay by allowing him to communicate this way. The speech evaluator commended me on having taught him so much signing. According to her, it hasn’t caused the delay, but is a very useful tool for him to have. He would be so much more frustrated, and we’d be seeing so many more behavioral challenges without it. It feels good to have a professional agree with my decision, and yesterday I needed something to feel good about!

So now my husband and I are trying to process all of this information (without actually having much information yet.)  How can he communicating at the level of a 6 to 9 month old when he uses around 40 ASL signs now. They said they gave some credit for signing, but what baby of that age has such an extensive vocabulary? Could it be that an accurate picture of your child can’t be gotten in a 1 hour time slot that was shared by two different evaluators (one for speech, the other for the other developmental areas).

Last night Eli was begging to watch his In Performance at the White House show of Latino music again, but my husband and I wanted to unwind with TV we were more interested in. Once Eli was settled in and nursing down I asked Jeff if he wanted to watch another program (other than Parenthood which was on at the time). Eli immediately popped up and began signing “music” which is the sign he uses for the In Performance… show. It seems like he understands so much of what we are saying, even just between us adults, these days. Does that fit with a 12-15 month range? I mean, maybe it does and my expectations are just very low. I don’t know.

I visited a friend and her children today and told her a bit about all of this. She comes from an AP/natural living perspective. She said that she avoided having her son screened because she knew that he would be pegged as delayed and she didn’t want him to be labeled. Instead she has worked with him (she is a very dedicated home-schooling mother) and he has come along at his own rate of development. She sees that there is a financial incentive for labels to be given to any child brought in by parents with concerns because that soon leads to the purchase of expensive therapy.

We may have insurance for a limited time now, so I plan on taking advantage of our benefits as much as I can while I have that option. I guess I’d rather error on that side of the equation. But it does make me think. Perhaps it is ok for Eli to learn to speak a bit later than “the norm.” I don’t want to medicalize what may be what is healthy and fine for him. But inaction might mean missing a good opportunity for early intervention if there truly is a problem other than a different personal developmental timetable involved. And I don’t know how much of my thinking is rational and how much is parental defensiveness or denial at this point.

I know this post may be a bit disjointed and incoherant. Mostly I am writing to help myself process my own thoughts. I would, however, welcome any insights, personal experiences or opinions people that read this might want to share.

Thanks for reading.

Karen