31 for 21 (#31) The last one! Wow!

I leave you with some Happy Halloween wishes from our family to your families, but especially from dear Elliot, our wee one who just so happens to have Down syndrome. He wore his horse head with trepidation tonight. Nora wore it in years past (by the way, it talks). His lion costume from last year from dear Pam and her family, unbeknownst to me until today at 5 p.m. when we attempted to put it on, was too small, so we scrambled for something and the horse head worked. The shoes that accompanied the costume and make clip-ity clop sounds when one walks were entirely too big. Nora was a lovely black kitty and Isaac wore Nora’s bee costume from her infancy. Fit like a dream. I wore a smile. And, because of Elliot and my other beloved cherubs, I will always wear a smile!

31 for 21 (#30) In reference to the "T" and the "21"

Elliot is rockin' his new T21 gear. We have a cute little specialty shop here in town that does custom embroidery on kiddo clothing and things for adults as well. I could not resist this as well as a tee for Nora sporting her name and a peace symbol.

Funny, when I asked the 20-something gal for the letter "T" paired with the “21” she asked if I knew someone with Down syndrome, or if this was for my child. She thoroughly caught me off guard. She said that her sister had Cerebral Palsy, and that she was familiar with quite a lot from a medical standpoint. Familiar indeed. Like I said, I was flabbergasted with her question, but wow, maybe we are doing something to educate.

31 for 21 (#29) ROAR!

And, I think it still fits this year! Thanks to Pam, we'll be a lovely lion two years solid!

31 for 21 (#28) Extensions

Isaac and Nora, when comparing baby photos, look like twins. We are always told that they are spitting images of my husband: the curls, the big blue eyes, etc. Nora is starting to look a bit more like me, but for the most part, she’s all Jeff.

But, we have never been told that Elliot looks like either one of us. When people look at him, they cannot help but notice that he has Down syndrome. It is always what they see first. Shallow, but true.

But, if they look close enough, they’ll see his eyes, and they will look into his soul. I can see straight in.

One can only hope, as a parent, that their children will grow up taking on their good traits, becoming extensions (of the good parts) of each parent’s persona. Of course, all children are unique and will develop exclusive characters, based upon both nature AND nurture.

Elliot may not look like either Jeff or me. After all, he looks like an angel (and Lord knows that Jeff and I have our flaws). Matter of fact, I think that Elliot “is” an angel, and rather than worrying about just how he’ll turn out, I try to imitate HIM. When others may see drawbacks or disadvantages, he sees splendor. When others are distraught, he is forever filled with laughter and smiles. Cliché as it may sound to some, Elliot is our gift. And, rather than trying to determine if indeed he’ll become an extension of our worthy qualities, I will forever strive to emulate him: his courage and valor, his sincerity, and, most importantly, his inner beauty. That, my friends, is what it is all about. Because of Elliot, I don’t lose sleep regarding his siblings either! Blessed is an underestimation. We are sanctified with his presence.

31 for 21 (#27) To the doctor - but NOT with Elliot!

Bad 31 for 21 post, but just popping on to say that Nora sprained (and may have broken) her darn ankle. We literally spent hours at the pediatrician’s today, X-ray and the like, only to get an “I’ll have to consult with an orthopedic surgeon regarding the X-ray,” from the PA that we saw. Of course, EVERY time that I bring Elliot in, they MAKE time in the schedule for him to see a pediatrician.

Nora? Nope! So, we wait – ankle elevated, iced and Elliot thinking to himself, “IT ISN’T MEEE THIS TIME!” Nice change of pace for my boy, huh?

31 for 21 (#26) Puking and a pumpkin

My little man is ill. Vomiting at Sam's Club late yesterday afternoon. Mind you, Sam's Club is about 30 minutes from our home. We left in a flash. Made it home and he went to the tubby, and immediately to bed. He has kept a bit of Pediasure down today. A bit, but not much. He also managed to roll the pumpkin from the front door entrance to the living room. Oh, and Nora as a cat made him smile. Her smile, however, is missing the front two. Appropriate, don’t you think? And, quite daunting too!

31 for 21 (#25) My heart? It broke yesterday.

Yesterday was Nora’s fall party for her first grade class. Note – they do not have Halloween parties, nor Christmas parties, nor Valentine’s Day parties, merely fall, winter, spring, etc. Anyway…

I sit on the “room parent” committee, and as said committee person, I am part of a team of mothers who plan these parties. We planned a joyous event. The children had a riot passing the pumpkin, having a sack race (indoors as it was windy with rain) decorating Halloween (woops “fall”) sacks for homemade snack mix, etc. As I said, all the children enjoyed themselves, all with the exception of one dear boy who just so happens to have autism.

This little lad was so dejected, and that is an understatement. Chaos is not in this little boy’s vocabulary, and among the clamor, one little boy (a vital part of the first grade class) was left out and very sad on the floor crying.

How could we have forgotten him when we planned the party? More importantly, how could I have neglected to think about the fact that a boy with autism would be asked to participate in the party’s activities as well? He attends therapy sessions at Elliot’s therapy facility. I have chatted with his mother on more than one occasion. I have “communicated” with him, and when planning the party, I did not remember him at all. Me, a mother of a child who just so happens to have a little boy with Down syndrome, forgot that Nora has a child with special needs in her first grade class.

Needless to say, his aid removed him from the classroom. I approached her and asked if I could work one-on-one with him. “We could decorate a fall sack for snack mix,” I suggested. “No, not a good idea.” “He is beyond return at this point.” So, I made him his own sack with his name to take home. It was the least that I could do.

Later in the evening, I emailed the first grade teacher and asked her to please suggest an activity that Nora’s classmate would enjoy at the subsequent party. She was pleased that I remembered him. I was displeased that I forgot him.

I could not help to think ahead just a bit with regard to Elliot. Would the parents who planned said parties remember “my” son…remember that there was a child in the class who had special needs? Would they plan the activities accordingly?

Will Elliot be able to “pass the pumpkin?” Or, will he throw it in the middle of the circle of children rather than to his neighboring peer? Will he understand the words in the story read to the class? Will he be nimble enough to participate in a sack race in first grade? Will he enjoy himself?

Of course he will.

And, I will never fail to recall Nora’s classmate with autism (or any classmate with any special need) again.

31 for 21 (#24) Unconditional

Have you ever had a child hug you with his entire being, heart and soul?

I have.

Each and every day for over twenty-five months.

31 for 21 (#23) Daniel Drinker: "Wow!" Enough said!

In all of these posts, I simply could not leave this out. Please go here. You’ll be amazed…with the integrity, the hilarity and the tears. I can literally stay for hours watching and reading. This, my friends, is just as good as it gets. Please visit. You’ll be awe struck!

31 for 21 (#22) Achievement

As most everyone knows, toddlers are usually very active physically. And, the typical child, by the age of two years, has begun to develop a variety of gross motor skills. As most everyone also knows, we have a non-chromosomally enhanced almost 14-month old and a chromosomally enhanced almost 27-month old. They are separated by 13 months and one day, but almost like twins from a gross motor perspective.

I get the question ALL of the time, “Oh, do you have twins?” I always feel the need to justify because most people pop their heads right into the double stroller. “Well, no, they are just over a year apart, but…” then I go into my spiel about Elliot’s special needs, how he was born two months prematurely and is small for his age and so on. One of these days, I won’t feel the need to say anything, but when a complete stranger is staring at my kiddo with Down syndrome then back at my typical child, I always feel the need to open my mouth. Who knows why?

Needless to say, I wanted to chat about gross motor development and I have gone off on a digression. Elliot crawls. Isaac crawls. Elliot crawls slowly. Isaac is a speed demon and is nearly walking, cruising on the furniture and taking steps here and there. Sometimes it is bitter sweet, but most of the time I am very pleased to observe Isaac’s feats.

Elliot, however, is mad. Elliot is mad when he witnesses Isaac’s gross motor abilities. And, that is starting to make me happy, because his anger is turning into motivation. He blew me away today when he beat Isaac in a “race” down the hall. His brain is telling him that he should be able to go, but his little body generally holds him back. But today, he’d have nothing of it. Slow and steady generally wins the race, but today, Elliot literally sped down that hall and nothing, not even his frail and floppy body, got in the way. Yippy Elliot! Triumph at last.

31 for 21 (#21) Elliot and the Red Brush

We have toys. We have toys, and books and heaps of baby stuff coming out of our ears. But, Elliot prefers the red brush. His face lights up with merriment each and every morning following his bath as I fetch the red brush to tame his rats. He would literally play with the red brush, “talking” to it, swinging it, licking it (and yes, I clean it often) and throwing it so he can crawl to it, for hours on end if I allowed this much red brush time.

We also have a cat toy that he cherishes, a carpeted base attached to a wire spring with a fur carpet ball affixed to the end. Oh, and my slippers. He loves those too – security toys I call them, even though they are really not toys at all. When upset, he searches for the slippers, the cat toy or the beloved red brush. I know that I can calm him with any of the three. And, heaven forbid that Isaac try to steal one of these much-loved items. Elliot will share everything, with the exception of these things. They are his and Isaac ought not come near!

God love my boy and his adored red brush.

31 for 21 (#20) What are THESE?

Elliot is not too sure about his new “Sure Steps,” or his new shoes (Stride Rites) for that matter either. My grandfather used to own a shoe store, and has instilled a firm belief in my family regarding the importance of properly fitting children’s shoes. I wish he was alive to fit Elliot himself. So, Stride Rites (professionally fit) over the Sure Steps it is! Darn the price anyway, but the boy needs to learn to walk!

31 for 21 (#19) Dream Big

We were with you in spirit, Chelsea! Much love from us, you sweet little fighter you!

31 for 21 (#18) Who me?

I received a wonderful phone call on Thursday. I was asked to sit on the Early Childhood Planning Region team in Lincoln! This is a really a big deal for me. As a grant funded program, we are to:

“…provide the mechanism for planning and assisting with the implementation of the Nebraska Early Intervention Act (Sections 43-2501 through 2516, Reissue Revised Statutes of Nebraska, 1943) and to serve in an ongoing advisory capacity regarding the implementation of the act in Region No. 18.”

The team is committed to the development of a process that provides family centered and family guided services to young children with disabilities and their families. To accomplish this mission, the following goals must be reached:

1. Support and enhance families' abilities to use their unique family strengths in order to access the appropriate services for their child(ren) with special needs;

2. Identify the needs of families of children with disabilities as they relate to the child's development by seeking current input from families;

3. Facilitate the development of interagency collaboration for the purpose of providing services to families of children with disabilities as they identify their needs;

4. Facilitate the development of a system for sharing information, resources, personnel and advocacy in order to provide appropriate services to families and their children.

“The Planning Region Team is an organized group of parents, advocates and representatives from school districts, agencies, educational services units, Head Start, child care, and other relevant persons or agencies responsible for assisting in the planning and implementation of the Early Development Act in each local community or region.”

Elliot has been a part of the Early Intervention process since he was a month old – and mind you, he was born at 32 weeks gestation. His team includes a wonderful group of therapists and educators.

Partners in the Early Childhood Planning Region team include: the Arc of Nebraska, Nebraska ChildFind, Fragile X Families and Associates, Nebraska Autism Spectrum Disorders Network, Lincoln Public Schools, United Cerebral Palsy of Nebraska, The National Down Syndrome Society and many others all working toward the same goal. With only a handful of parent representatives, I could not be more honored to assist! Wish me luck.

31 for 21 (#17) Focus on a Friend

Aiden, sweet Aiden. I love Aiden. Aiden and Elliot are nearly the same age. Aiden's mother is a good friend. She sent me Aiden's school photo today and I could not resist posting. Elliot has many, many good friends due to his extra chromosome. He could not be any luckier!

For more about dear Aiden, written by his beloved (and very intelligent) momma, go here. Love the pic Aiden, and you too!

An interesting side note: Both Aiden and Elliot had their ENT appointments today. I just read that Aiden will be getting Ventilation Tubes, and SO WILL ELLIOT. Let's schedule on the same day, okay Stephanie?!

xo, Michelle and Elliot