Tuesday, November 8, 2011

Feeling Down: Remember It is Just a Number

Everything is going along fine and just when I think that I have accepted Ellie's diagnosis of Down syndrome and all of the associated aspects, BAM!  I get slapped in the face with something and I feel down.  I am reminded of how far I have come and just how far I still need to go.  I need to adjust how I feel and how I look at things.  I recognize that, but it is easier said than done.

This latest trigger, it all came down to Christmas shopping.  Yes, Christmas shopping.

Christmas seems to come earlier and earlier each year and now that I have a child, family members ask what Ellie would like for Christmas.  My answer was "I don't know".  Surprisingly, my answer made me feel rather sad and confused.

Many factors have contributed this.  I am starting to notice that Ellie is falling further behind her peers.  Her cognitive level is between that of a 12 to 18 month-old according to our latest ECI evaluation from September.  Ellie's friends are at a 2 year-old level.  Where her playgroup buddies are slowly becoming interested in princesses and pretend play, Ellie does not even know about the world of Disney Princesses (yes! Thanks goodness!).  While they pretend cook with the pretend food in their pretend kitchens, Ellie mouths the fake food.   She is just now starting to pretend with the telephone and sweep with a broom.  Do not even ask about Toy Story.  Ellie has no concept as to what Toy Story is. (Yet she is all about Signing Time!)

Then there is the whole talking situation, or lack there of.  Ellie has trouble communicating what she wants for lunch let alone what she wants for Christmas.  Again, this makes me scared and sad about the whole communication issue.

Because I was unsure of what Ellie would like for Christmas, I made a trip to the Target toy section with Ellie in tow.  It was real scientific.  Walk up and down the aisles.  See what captures Ellie's eye.  Hand her the toy and see how long it holds her attention.  The toys that hold Ellie's attention the longest end up on the wish list.

We walked past the dress up, the play-doh, the baby dolls and ended up in the noisy V-Tech and LeapFrog section.  I have learned something--do NOT look at that age specifications on the box.  Seriously.  Do. Not.  Look.  I did and I let it get to me.  The toy that said 6+ months held Ellie's interest the longest.  She was most enthralled with toys for babies and not toddlers.  I left Target feeling a little deflated.  The thing is what is the harm?  Really?  Is it a big deal that she likes toys designed for younger children?  No! The two main questions one should ask when picked out a toy is:
1. Will they choke on any of the parts?
2. Will they learn from it?

All of the toys that Ellie was drawn to were safe and educational.  That age suggestion is just that, a suggestion.  It isn't a rule.  It is just a number.  If Ellie enjoys it and will learn from it-Great!  It is me who needs to change.  It is me who needs to be more accepting.  I am working on it.  I promise.

Clearly my daughter has no gross motor difficulties.  She can climb like a monkey and give Mama Bear a heart attack on a daily basis.

Plus, when I compare Ellie to Ellie, I see just how far she has come in the past few months. . . all of the new things she is doing and the new concepts she understands.  I should be and am proud.

I really want Bear's red Mary Janes.  I wonder if they come in adult sizes?



  1. That's it! Just compare Ellie to Ellie! And work to the next developmental step. That's all you can do....

    I used to look at other kids and see what they could do and I would only look at how my son could NOT do those things. I wasn't looking at how far he had come in his own abilities. Then, when our friend had a daughter with CP, she was eating dinner one evening. I admired at how well she could eat and lamented while my son was 2yrs older and still on soft foods and has oral aversions to food. Well, she was barely able to sit up on her own, much less walk. My boy was running, climbing and doing all kinds of things. That was my wake up call. I was focusing on comparing him to other children based only on his deficiencies. I was not looking at all the things that he IS able to do as a whole. I had nearsighted vision when it came to the one issue of feeding.

    So I've learned only to work on what we can.

    Oh, and my son is 7 and he still LOVES all those baby musical lighted toys! I can't leave the baby toy section at the grocery store without dragging him away from those! So don't fret, my dear!

  2. It is so hard to NOT compare our children to others their age. I have a hard time doing it with my "typical" children. Ellis is doing fantastic! I love seeing her beautiful smile. I have a friend whose daughter (without DS) is 7 and she still loves the toys that are for much younger children. She will play for hours with a toy she has had since she was 2. You are on the right track to compare Ellie now to Ellie a few months ago. Now, if I can take my own advice :-)) Hmmm...I do love those red shoes...wonder if we can find them in adult sizes :-)

  3. Lily has those same tights- the polka dot ones- they're my favorite!
    I can relate to everything you said...so I told my family more Baby Signing Times videos for Christmas:) LOVE your photos as always..

  4. I'm a little unsure what to do about Christmas presents too. Clairey needs some new toys, but I'm just not sure what. We tried the wander down the toy aisle trick too. :)

    And I love Ellie's shoes! Where did you get them?

  5. Alex has always fluctuated between ago appropriate and learning appropriate. Sometimes he is a little behind, depending on his interests sometimes he is a little ahead (he was really into science-y stuff way before his peers) and sometimes he is right on.

    I find it best not to look for things outside of him. I look around at typical kids and I'm reminded that they are are different too and I try to remember that everyone has issues, they're just different from ours.

    I get this same kind of funkiness too. Not very often, but it does catch me sometimes how different life could be. I give myself 30 minutes - to be funky, cry, be angry, whatever and then I have to suck it up and move on :-)

  6. I want her shoes too! If you find them in adult sizes get me a pair please :) As for the toys...well my 4 and 3 year olds play with Reagan's toys more than their own these days. And yes...compare her only to herself. I have three daughters and they are so very very different and that is discounting the extra chromosome that Reagan sports. Remember she is going to maximize her gifts whatever they turn out to be FOR HER :)

  7. We rejoice in every milestone Ellie makes whenever she makes it. She's our Ellie Bear. Hey, you had red shoes when you were her age too!

  8. Ellie is perfect the way she is! Kids with DS will do everything that their typical counterpart will. It just takes longer. I think of it as "beating to their own drum". Let her make her beautiful music. Thank you so much for sharing your wonderful daughter and her big adventures.

  9. oh honey i hear you butthe delay is simply God painting extra layers of magic onto the surprise when she does suddenly pick the dolly up and dress it, or cook you a plastic sausage! Tilly is nearly 6and is only just beginning to pretend play! the first oent we saw her snuggle into bed with a dolly under her arm (under the covers...something we also thought we would never see)me and hubby sat holding the video monitor between us crying!! magic all the way!!! the extra bucket loads our kids give just take more stirring.dont compare, its not fair on the other kids...ellie is such a scrummy bear she willwin every time even if she is playing with a baby toy! xxxxxxxx

  10. anyway honey i have something to cheer you up...go over to sarah's blog here http://matthew18vs14.blogspot.com/2011/11/waiting-wednesday-elden.html she has LOADS OF PICTURES OF BEAUTIFUL ELDEN XXXXX

  11. Okay, I have three kids. The nerdlet just turned four. The bear cub (47 chromosomes) is 2 1/2. Darth Baby is 11 months. All three of them and my 5 1/2-year-old niece spend a great deal of time playing with the 6 month and 9 month toys that we still have lying around. Also, at the nerdlet's fifth birthday party last week, some of the adults would pick them up and handle them. I would absolutely not take that to heart.


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