Blogging for DS- my 31 for 21

Another year is slinking by, and I forgot to do the 31 for 21 campaign. I love that DS blogging parents remember this and share their stories. I'm so wrapped up with maintaining our ground troops that I forgot to type while in the trenches.

So I'm going to make a list of 31 ways Down syndrome has impacted my life. This will be my 31 for 21; Lord knows when I will resurface again. Here goes...

1. Celebrate daily. For example, last week was the first time Miles specifically asked for "mommy hugs." I've waited 3.5 years to hear that; you better believe that was celebrated here.

2. Miles will always be a person first- there should be no label before his name. Ever.

3. Fight for what you believe in.

4. Let go of those things you cannot change- or just telling yourself that until you forget it all together.

5. Start early. Education begins at birth. (I read Miles a Kurt Vonnegut book in its entirety on his second day alive... Explains a lot, I think.)

6. Sign language is amazing. Sign language unlocks doors and opens minds.

7. Music is universal- just ask our tiny Smokey Robinson fan.

8. Lead with your heart, hope with your head, and hold hands when the going gets tough. Thank God for Team Milestones!

9. Believe in the power of praise. All kids like positive feedback.

10. When the going gets rough, tag team it. Know when to tap out and collect yourself.

11. Laughter will see you through. Same for coffee. Add in Thomas the Tank Engine toys.

12. Flashcards!!!!

13. Every moment is a teachable moment- from the grocery store to the doctor's office.

14. My son is braver than I am at times. Scratch that- mist of the time.

15. Breathing should never be underrated.

16. Playing together, having fun, and laughing is the best way to bond- kids know when you genuinely enjoy your time together.

17. OTs, PTs, and speech therapists hung the moon.

18. Heart surgeons and PICU staffers are my heroes.

19. Doctors, in general, don't like me. However, nurses love my son.

20. Know your rights.

21. Know how to ask for help.

22. Know that it is not your fault.

23. Know that you have to be honest with yourself, acknowledge your feelings, and be willing to share them.

24. Foster independence.

25. Socialize and Enrich- just like rinse and repeat... Should be done daily.

26. Hug it out- know that you and your partner will be facing some pretty big challenges.

27. Do your research.

28. Brag whenever possible because good news is always worth sharing.

29. Don't be afraid to speak up or speak out.

30. "Life is full of surprises" is truer than I first believed.

31. Down syndrome is only a tiny fraction of my son's life. DS doesn't define him. DS doesn't restrict our family. It is merely the spring board for the greatest period of growth and learning in my life, and it is simply the starting point of my son's amazing life adventure. "It is not a problem. It's an opportunity," once said a wise granddad.

Well it happened...

I've become one of "those" parents, and I wouldn't have it any other way.

9 Months of Awesomeness

A Night for Writing

So I just penned "Miles's Story" to help support CDR.  I'll posting it below.  We are hoping it gets added to their website; this is an organization very near and dear to our hearts.  Read it and let me know what you think:

Miles’s Story

            From the moment he arrived, Miles has been a constant life force, a source of inspiration, and giver of true love in our family.  He spent the first two months of his life in the quiet comfort of status quo.  From delivery through several doctor’s appointments, Miles was the picture of health.  He was never fussy, always ready for snuggles, and was responding positively to our presence; basically, the arrival of our first child was typical and predictable.  All except for a slight snag, Miles had not developed a “social smile” by his two-month check-up.  It was at this time our pediatrician first mentioned the possible need for genetic testing, as a precautionary measure.  I remember leaving that appointment literally shaking; my world, my precious son, may not be as healthy as we first imagined.  Following the lab procedure, our family spent a breathless weekend anxiously awaiting the results.  During this time, my first Mother’s Day passed.  While we all put on brave faces to celebrate the special occasion, my heart was breaking inside as our son’s fate waited to be revealed. 

            By the time we learned of Miles’s condition, a translocation form of Down syndrome, we had prepared ourselves for the news.  Oddly enough, hearing the news was such a drastic relief for us.  We could now breath, collect ourselves, and seek out the best possible resources for our beautiful son.  Within the week of learning about Miles’s condition, I had contacted Child Development Resources.  Their response was immediate, as was their compassion for my family. 

            To be honest, the period of initial evaluation and IFSP development is a bit of a blur.  Not only were we coping with Miles’s recent diagnosis, we also learned very quickly that he had a profound congenital heart defect.  He was quickly scheduled for open-heart by-pass surgery.  Prior to that procedure, we were able to have a few sessions with Robin, Miles’s case manager and OT from CDR. We used that time to discuss what post-op accommodations would be needed, and, more importantly, we began to build the foundation for a wonderful partnership. 

            Miles sailed through the surgery like a true champion; he was much stronger and braver than the rest of us.  Following a few weeks of recovery, Miles resumed his work with Robin.  She was both an excellent therapist and an instructor, showing us how to best encourage Miles’s development and to reinforce her efforts.  In Miles, Robin saw and fostered his awaiting potential.  Over the next year, Wilda joined our team as Miles’s speech therapist.  Her patience and persistence was evident from day one.  Robin and Wilda will always be very important people in Miles’s life; their dedication and support are the driving force behind Miles’s current successes. 

            In addition to receiving direct services, Miles also attended a weekly CDR playgroup.  From hiding out in the ball pit to racing around the playground on splash days, Miles had many great friends (children and staff alike) during those visits.  We also made some great friends, too.  Watching him explore and develop in a truly supportive and nurturing environment was a gift for us.  Furthermore, CDR did an amazing job providing transitional supports for our family as Miles made the move from in-home services to attending a special education program in the public school setting.  While the transition workshop for parents was very helpful, watching Miles ride the CDR bus in preparation for the public school bus was the highlight of that time.  To this day, Miles’s favorite part of his school day is riding the bus, a fact we solely attribute to CDR.

            Time seems to be racing by now.  Miles has just entered his second year in the public school setting.  Not only is he getting bigger by the day, he is now a big brother.    His vocabulary is exploding, just as his command of his environment.  And rest assured dear friends at CDR, he is still blowing kisses.

            Aside from all of the support Miles received, I will always be indebted to the personal care that came my way.  Prior to Miles’s birth, I began my work as a special education teacher for the county.  All of my classes and training had only prepared me to be a teacher, not a parent.  Robin, Wilda, and countless of other CDR staffers helped me make the leap from professional to parent by entertaining my thousands of questions and providing gentle and continual encouragement.  Your support has helped me become the parent I am today.  Thank you from the bottom of my heart.      

Riding for Miles (Miles for Miles)

Two of our favorite people, Clark (Uncle Dude) and Katie, are riding in the Best Buddies Ride in Washington, D.C. in Miles's honor.  If you love Miles, want to support the Best Buddies program, or simply have a burning desire to spend money, please visit their fundraising website.  Click here!

Please support Team Miles for Miles

In the dark

We are in the dark, going on day 3 1/2 without power. The house survived the storm with only minor damages, though we lost some huge limbs. As for us, we are doing okay. Irene greatly rattled Poppy, and she's been fussy since. We also think she's afraid of the dark, poor baby. Miles is loving all of the sticks and puddles- it's like little man adventure land. And Jesse and I have been locked in a serious ongoing Scrabble battle. I won last night with a 54 point word which u cannot share in this family forum- : ). All in all, we are feeling thankful, especially as we remember Hurticane Katrina this time of year.

It's the final countdown.

Tomorrow this time I will be setting up classroom. Sigh.

Tonight

Tonight I am grieving for some friends of our family.

Until now I thought a sudden death would be a blessing, no long drawn out illness, no time spent fearing all of the unknowns... Now I am feeling the pain of an unexpected passing, the pain of not getting to say goodbye. And that is truly devastating.

Back to School Thoughts while Going Blonder

Sitting here, head full of foils, counting down the seconds until I start my 6 year as a teacher. How 'bout them apples? That's amazing! This is also a landmark victory because I've made it past the typical 5 year burnout for special educators. Like I tell folks, I'm in special education life- in one capacity or another. Which brings me to another thought- if I weren't teaching, how else could I be as involved in the special education community in a professional sense? Teaching keeps me on the front line for all procedural and paperwork changes; it allows me to be our best advocate. I've always thought things happen for a reason, and my background definitely has definitely payed off in spades on terms of knowing and finding resources for Miles. So I guess I owe a huge AMEN and thanks for my school district for taking in me.

And I'm not the only one in countdown mode. Miles wanted to talk about his bus last night at bedtime. He's so ready. He misses his buddies, all of the fun activities, and of course, his beloved bus. I would pay (if I could) to get the same driver and aide for him. Miss Rita & Miss Carolyn truly loved him- and we couldn't have felt better sending him off each day- besides, they gave him the best hugs. I'm going to tear up soon- time to blame the bleach.

Updates: M & P

Miles is rebounding from two nasty infections. We had a double-header of strep and sinus infections come crashing down on him (and me) last week. After two rounds of two different meds, he's looking better. Still a bit snotty, but his energy and ability to cooperate (which disappears when he's sick) have returned.

Poppy has teeth, two beautiful (and Ginsu sharp) bottom teeth. The top two are begging to join the party, and they are hellbent on making an entrance as soon as possible. For the most part, Penelope is handling the matter with elegance and grace. Other times, she is gnawing my hand off in a non-verbal plea for some liquid Tylenol. God bless teething toys. Especially those that can be chilled. Amen.