Thursday, August 25, 2011

Developmental Neurology: an update

Before I start this post, here is my perspective on developmental testing and whatnot as a pediatric health care provider who is also a mama of a angel with Ds & SPD.

1)   Developmental Testing:  as the developmental nurse told me on Tuesday "Developmental testing is really just a 'snapshot' of what is happening that day."  Or as Ellie's ECI therapist always says "test scores vs. ability is only as good as what the child has done that day during the actual test".  Basically, these tests truly do not measure our child's total ability.  They are standardized and developed while using "typical"-developing peers.  The questions must be asked in such a way and the child only has so many times and x-amount of time to perform the task.  They are so the health-care providers & therapists know what types of services our children need and so that they know what areas must be concentrated on for our children to succeed.  These tests do not take into account that children with Ds often need more time to process the directions and follow through on the command or that directions may need to be repeated with different wording. It is not a perfect system. All of that being said, as a mama bear, these tests are annoying and frustrating.  I know that Ellie is delayed and yet, I get upset when I see the actual number, the age in months she is at.

As a mother, I still compare.  I  know shouldn't, but I cannot help it.

2)  Do not compare children.  This includes comparing siblings.  This included comparing two children with 46 or 47 chromosomes around the same age. This also includes comparing two children the same ago who both have Ds.

Since we, including myself, feel the need to compare:  COMPARE YOUR CHILD TO HIM/HERSELF :-) That means I compare Ellie at 23-months to the Ellie of 20-months.  Guess what--you will see some plateaus, but you will also see that mountains have been climbed!

3) Go with your mama gut.  Do what you need to do for you child to succeed.  You will ALWAYS know your little bear more than any health care provider or therapist.  They can make suggestions-some you may follow and others you may not (ie my daughter would be in therapy every waking hour if I listened to every provider!).  

Okay, the real post--the one with Ellie Bear stats and my thoughts as a mother:

Last week Ellie hit the 23 month-old mark and I have noticed that I am telling people that she is "almost 2".  Yikes!  My baby is nearly two!

It is a bittersweet moment.  I am so happy to see little Ellie's personality blossom and to watch her, with great determination, master many tasks.  Yet, my little girl is no longer a chubby little baby with rolls and big chunky cheeks that are perfect for storing acorns.  There are now exciting things like temper tantrums, which unfortunately stem from lack of effective communication, food throwing, and climbing.  Have I mentioned that she enjoys turning on the dishwasher?  Or that she runs away from me when she sees her pajamas?  Or that she must comb her own hair?

Our life has recently become hectic (not bad, just busy) and I am ready to fill all of you in, but the time to blog just isn't there.  The time to review photos and take photos is dwindling.

So I will just catch you up to speed on Ellie's development and then cover the rest later :)

Here, let me "help" you with the laundry.

*I actually wrote the above paragraphs when she hit 22-months and I never finished!  Still hectic

On Tuesday we had our follow-up appointment with Dr. F, the developmental neurologist/pediatrician.  This appointment went so much better than the last appointment--Punched In The Gut-Sensory Processing Disorder

Maybe it isn't that the appointment went better, but that I was in a better state of mind.  There was no labeling of my child and I sort of knew what to expect this go around.  Plus, it helped that my mother was still in town and able to go with us to the 2+ hour-long visit.

My little motor-sensory driven toddler did so well during the first 30 minute in the room.  Ellie Bear sat in the little plastic chair and built a beautiful tower of 8 mega blocks, a toy that she has never played with before.  The thing is, no one else was in the room, but myself and my mother to witness her performing "functional play" with "great attention" and "decreased distractibility".  They were 30 minutes behind schedule.  Typical.  Thirty minutes of pure toddler-bear in a small, cramped room before the "real" testing in front of Dr. F, a speech therapist, an occupational therapist, and a physical therapist.

The testing required Ellie to sit some more.  For a long while.   She did very well in my opinion. Then they asked me "does she walk?" as Ellie is climbing from the chair onto the exam table.  Right.  For those of you who either know Ellie or read this blog already know about Ellie's gross motor abilities.  "Does she run?"  Yep, but she wouldn't "perform" in the small cramped room so little Bear didn't get any credit for that one.

As we have always known, my daughter is a motor girl and speech comes in dead last. Moving about the room and playing with the big kids and our puppy has always been a big motivator for Ellie.  Talking, pointing, signing, etc are not so important to her. She doesn't "have time" to indulge us when we try to teach her words and signs for playing fetch with the Sophie Dog or climbing the slide is much more important.  What am I getting at---some kids are better at one aspect of the exam than the other.  Gross motor is Ellie's strength.  Communication is not. (Ellie: I prefer to use SCREAM as my mode of communication)  For other children, they may not walk yet, but they can talk up a storm or/& sign multiple words.

You mean I am not supposed to climb onto and sit on the IKEA toy shelf?

So I am sure you want to know some stats:

Length: 31.5 inches (up 1 whole inch in 3 months)

Weight: completely inaccurate in my medical opinion so I refuse to post

Gross Motor : 17 months (16 months at 20 months)

Visual Reception: 18 months (not test at 20 months)

Fine Motor: 18 months (12 months at 20 months)------MOUNTAIN CLIMBED!!!!!

Communication: not tested (10 months at 20 months)

We will be tested in ~1 month with Early Childhood Communication [ECI]

Current therapies: Speech 1 x week; Applied Behavioral Analysis [ABA] therapy 2 x week; developmental therapy via ECI 1 x week

Additional recommended therapies as per the Developmental Neurology appt: Occupational Therapy--specifically adding in oral proprioception for sensory integration.  I respectfully refused to add in more therapy since I want Ellie to have a life and instead asked our developmental therapist and our speech therapist about the oral proprioception.  Both of them said "Ellie does not need that."

Ellie signing "book"
She first picked this sign up last week!  She actually gets that the sign goes with the object.

Here is what I know with Ellie's communication.  In 23 months:

4 words total--3 of which happened in the past month--mama, dada, dog (a-vah), shoe (oooh)
16 Signs:  mama, dada, dog, hat, more, eat, baby, book, music
Other signs that have been performed, but not regularly: bear, cracker, sandwich, berry, cat, water, out

Tapping objects she wants.  This is far superior to the throwing or the scream.

Ellie is making great strides and I am trying to take all of this testing with a grain of salt.  Ellie is fabulous, engaging, wonderful, and perfect with a whole lot of sass and spunk.  My job is to help her thrive in the best environment possible.

Next month, I will be crying those bittersweet tears as she turns two.


1 comment:

  1. Oh those stupid tests. I know they need to be done for services, but still, I don't like them. I always used to think that gross motor was Claire's strength, but as the signs keep coming and the walking doesn't, it just proves I don't know anything. I was just fine with the 12 month score on GM at 14 months, but now at almost 20 months, that 12 month score is starting to bum me out.


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