Little Chef

Like Mother, Like Daughter... Maggie's most favorite food in the whole wide world is gluten free pancakes. She will eat 6 little pillows of heaven (which for this supermodel is a lot) Today she had the urge to help so I let her stir the batter and then she helped me flip them! She chewed on the spatula covering it with drool....ew.... On to spatula #2 - conquering breakfast!

My mini helper

When times get tough...

When Times Get Tough... The Tough Go Blonde! The past week has been filled with drama, meltdowns, results from IQ tests, adaptive tests and every other test came down and no surprise the results were as expected, yet still hard to swallow. To keep my mind off the negative I decided I needed to do something for myself. I decided to take a risk, have some fun and get in touch with my inner Pin-Up girl :-) The most amusing part of this process was that I only had a 3 hour block of time when the kiddo was at class so this was a 2 day process and the first day I left with almost white hair - but left the second day looking like this!

It did throw Maggie off slightly but then I started talking to her and she realized who I was and then all was right in her world!

It's the most wonderful time of the year!

Nothing is more wonderful than Horseback riding season! After all the mandatory, repetitive therapies - Horse Therapy is an exciting break! She loves the bumpy ride, giving them hugs and touching their noses. She likes singing to herself and noticing every little detail around her. I love watching her smile and rock herself to try to get the horse going faster :) I wish I could go riding every week - Lucky GIRL!
This particular horse she is riding is one of the smaller horses, but typically she likes the taller, larger and faster horses! She giggles like it's the most wonderful ride ever!

Signing 'Touchdown' while on the horse...

What Makes Maggie..... Maggie!

Yesterday I was approach by a mom, who I see at church but I don't really know her, and she asked me this "What Is It That Makes Your Child Special?" I thought to myself, self ...that is the best, kindest, most lovely way anyone has asked about my child's difficulties. She genuinely thought my child was sweet, delightful and beautiful. She went on to say that she has a brother with down syndrome and how challenging it has been for their family. She just listened while I gave a short, non-detailed version of her diagnoses. She didn't feel sorry for me or Maggie. She didn't express pity. She didn't sigh heavily or say a lot of 'OOHHHH' She never gave a backhanded insult. And although I have had this type of encounter hundreds of times - I think this was my favorite and most uplifting because it got me thinking about what truly makes Maggie, Maggie.

On a medical form Maggie has dozens of problems and numbers and dates covering the page making any sane individual feel overwhelmed and possibly heart broken that such a young person has been through so much and has years to come of challenges.

On an IEP, Maggie is difficult, challenging, requires constant attention and multiple steps for adaptive procedures. She is behind in every thing she has been tested in. Her file is inches thick and she has never visited the principals office!

But like every standardized test - it is not a complete picture of the individual!

When I think about what makes Maggie, Maggie, I think about her Laugh - she has a full belly giggle, her whole body and every fiber of her being laughing, makes you have to laugh with her! She has the kind of laugh that just makes your whole world a little better. I love that she calms down and will get excited and dances to the song "Billionaire" - by Glee and she loves falling asleep to "Home" - by Michael Buble. We joke that she is a supermodel, but now I think she's an Italian supermodel - she doesn't like eating dinner but she will drink a whole bottle of Pelligrino, Italian sparkling water for a meal. She adores her uncles! And they adore her - they really are amazing with her. She loves bouncing on the trampoline! She is a football fanatic! She will will watch every game on Saturday and Sunday! She signs 'Touchdown' , 'Offsides' and 'False Start' - Correctly too! She could be a referee or a cheerleader someday - either way she gets to be near the action which is her favorite! She gives the best hugs! On the weekends she will wake up and play quietly until she is hungry and then will gentle touch my face to wake me up - (I sometimes pretend I'm still sleeping to see how long she will be patient and last weekend she tried 3 times to be gentle when waking me up - I hope she's imitating me and trying to be a loving, gentle waker upper)

I could go on and on...

She is wonderful, smart, beautiful, clever, feisty, sweet, unique, and above all My Daughter!

Christmas in May... Sure

Is it normal to have Christmas songs stuck in your head... in May? I personally don't think so. It's not as though I went to target and they were playing holiday songs over the PA system. I haven't attended 10 school holiday programs or turned on the radio to 24/7 Christmas songs. I really don't have a reasonable explanation of why I want to listen to Christmas music or have certain songs in my head. On a side note, I love how you can't say Christmas, it's 'Holiday' as to not offend, even though half the traditional songs have the word 'Christmas' if not in the title, in the song... just my personal ranting...

On the upside of this weird craving, I have found a bunch of music I really like. SO because it's the season for giving, I will share with you, my gift to you :-)

It's Christmas Time - Jules Larson

Joy to the World - Seabird

Auld Lang Syne - Keri Noble

Applesauce vs. Sour Cream - The LeeVees

(technically a Chanukah song...)

Silent Night - Sara Ramirez

Let it snow - Ben Rector

It Snowed - Meaghan Smith

Christmas for Cowboys - Jars of Clay

It's Been Christmas Here - Blondfire

Come All Ye Faithful - Justin Mcroberts

Playing with the dough

Ok So I have the song American Pie stuck in my head... go with it!

A LONG LONG TIME AGO, I CAN STILL REMEMBER WHEN THAT PLAY DOUGH USED TO MAKE YOU CRY. I KNEW THAT IF I HAD MY CHANCE I COULD MAKE YOU ENJOY THE DOUGH, BUT SENSORY ISSUES WERE TO MUCH :-)

While she did play, she did spend quiet a lot of time simply looking from a distance.






A few years ago, a few months ago it was like pulling teeth to get her to touch anything that set her off sensory wise! WAY TO GO MAGGIE! See Play Dough is not scary!!!

Reassessing

After thinking about it, which takes a lot of brain cells, I had to reassess assessments!

Are they repetitive, depressing and emotionally exhausting, YES. But on the flip side of the coin, I don't want to imagine my life without the knowledge and expertise of the professional, who by assessments can accommodate and really help my baby.

I don't like going through the process...

I really don't like hearing the results and the following steps that come after the initial tests.

It's like a blow to your abilities as a parent. A knife through your body, the body that gave life to this child.

I am however seeing progress! PROGRESS. That's the Magic word every doctor and therapist asks me about. Every appointment consists of the phrases "Are you seeing any progress?" or "I'm seeing progress!" I know it's easier for them to see strides when they only see her every 3-4 months or even once a year. For me though It's had to pay attention to the little, small progression she makes. I was trying to make a mental lists of things Maggie can do completely on her own, things she can do with some assistance, and the tasks she has yet to try, partake in, or will never do. I realized if I put her car seat in the center, allowing enough room on the seat for her to rotate her body around she can get in the seat by herself! I know, a 5 year old getting into a car seat, big deal right!?! - BUT It's those tiny steps that make the days easier, make the testing and all the assessments bearable.