Reviving the Blog

Lately I’ve gotten a lot of requests to revive this blog as it hits on a lot of the themes many of us are going through right now:

              I'm A Single Mom

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I'm a Single Mom raising a child who happens to have Down Syndrome

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I’ve massively changed careers and made the decision to follow my dream (and need for job security/health benefits) go to Nursing School.

And with ALL that going on, our life is pretty fantastic!

  

  And sometimes utter chaos!

Every day Max and I are facing great rewards and challenges that many of you are facing both within and outside of our Down syndrome community. 

I’ll be honest and I’m generally positive, and I’ll try to answer all your questions. Throw topics out to me, and I’ll try to get to all the ones you’ve already suggested.  We have a lot of creative solutions, and at times we are desperately in need of a creative solution!

***There are some things that will NOT be addressed, such as the origin of 50.5% of Max’s genetic makeup. Also, I have a strong preference for the serial/Oxford comma, so if these things bother you I can’t help you.

But you are welcome to share our journey into IEPs, transition to kindergarten, medical specialists, therapies, concurrent disorders (sensory, auditory processing), milestones, the evils of Nursing School, Gluten-Free/Casein-free eating, and the all-important time management (and sometimes lack thereof)...and hopefully we all can learn from each other along the way.

So have patience as I find my voice in this Down syndrome/special needs blogging community (and blog hop :) and keep sending ideas!

Thank You!

Thank you. 
I’ll reach out to all of the donors that I personally know, but for those anonymous donors, or people who I do not know yet…Thank you.

It’s very hard for me to ask for help, which is why I couldn’t. 

It was very hard for me to accept the help, but for Max I knew it was the right thing to do.

I’m so grateful to a wonderful friend Melaina for reaching out, and Ellen (an incredible woman who didn’t even know us) at Love That Max for writing the Blog post about us and putting this fundraiser together for us.

I’ll keep you all posted, but simply, Thank you all so very much.

  Kim and Max

*For those who don’t know the back story, please read the previous post. Or Ellen’s post on her Blog “Love That Max”

Hurricane Sandy, you really messed things up

Basic Needs vs. Special Needs

(Aka: How a natural disaster affects families with special needs)

ho·me·o·sta·sis [hoh-mee-uh-stey-sis] n. The ability or tendency of an organism or cell to maintain internal equilibrium by adjusting its physiological processes.

These days I never really think as Max having special needs, I’ve gradually adjusted our life to maintain optimum happiness (equilibrium) and now our life just seems normal.

It is normal.

In fact, on most days I dislike using the term “special needs.” But for this it just fits.

Max, who will be 3 years old next month, has Down syndrome.  But I never really think about Max being different anymore except when something disrupts our normal life so monumentally. Throws us out of a homeostatic state.

Like a hurricane. Like this Hurricane. Sandy.

We’re in Ocean County, NJ.  Which got hit badly. I won’t bother to add images of the destruction,  just turn on the TV or Google it and you’ve got the idea.

Bad enough that the governor and president just did a tour to check it out, then the Governor set up a FEMA station down the street. Massive flooding. Houses under water, washed away or burned to the ground. Even houses that sustained minimal damage (like mine) still have a lot of cleaning out and cleaning up of a few inches of water, ruined items, mold, and electrical wiring.  

Cars filled with water and are totaled.

So natural disasters are, well, disastrous for all involved; but especially challenging for kids with special or different needs.

Like most kids, Max does well on a routine. But like many kids with Down syndrome Max NEEDS routine. He will Completely.Melt.Down without it. 

So I’ve adapted life so it’s always the same. The same food, the same plate, the same room, the same days. It’s easy and comfortable for me so I no longer think it’s strange, it’s just normal and comfortable.

But, now his avocado and gluten-free turkey meatballs are unavailable.  Now mama is sleeping on the floor in his room next to him. Now new people are sleeping in the bedroom he normally would get rocked to sleep in every night. So his sleep pattern is entirely disrupted and I get 3-4 solid hours of sleep a night. Lots of yelling and Lots of crying (mostly him). Because he cannot fully comprehend what is going on and he’s not able to speak his needs, fears or concerns.

Exhaustion.  

If only I were a celebrity I’d get a round trip ticket to Malibu Passages with that diagnosis.  

Max is allergic to a lot of foods. Dairy, gluten, and soy just to name a few.  These dietary staples appear in almost EVERYTHING. So the loss of a fridge isn’t just a goodbye to a beloved appliance, it’s the loss of all of Max’s stockpiled allergen-free foods.  

Udi, Glutino, Meyenberg… I’m talking to you!
 

Stuff you can’t pick up locally in Target. Frozen stuff that cost a small fortune at a health food store. 

Sigh.

So back to routine. Every day Max receives therapy. I know that seems like a big deal to some of you, but like I said it’s our “normal.” They’re like family members and they help Max to learn, progress, keep up, and maintain skills. Early Intervention and private therapies have changed the way our kids learn and succeed in life. Plus it’s part of the routine thing.

Without them he’s out of whack, frustrated, confused. Already his speech has regressed a bit. Bummer.

But the flooded and destroyed car? 
This is the biggest loss for us. 
A car for child with special/different needs is crucial.

Our week is doctor and specialist appointments (endocrinology & gastroenterology); we’ll be negotiating borrowed rides.

That daily therapy: speech, OT and PT? On hold.

His weekly E.I. program for with toddlers with Down syndrome an hour away, nope. 

And of course getting to 2 jobs as a single mom (did I mention I go to nursing school as well!?)

Don’t get me wrong, I’m eternally Grateful. I’m grateful all my family and friends are safe. I’m so grateful we have a warm home with minimal damage that we can share with others. I’m grateful to have ample food and clean water, and a huge amount of friends and family members who are offering their help. I’ve grateful we’ve had complete strangers kind enough to help, who I can now call friends. And most of all I’m grateful I have a beautiful son, for despite his challenges has brought so much joy and laughter in such as stressful time.

But Sandy, I can’t wait for you to be a distant memory.

Preschool Step 2: The Meeting is Scheduled

So yesterday I dropped off Max's paperwork (see Preschool Step 1), and today at 1:14pm the Child Study Team called to set up our first meeting.

I'm surprised and impressed, they had 20 business days to schedule and they called almost exactly 24 hours after I dropped off the paperwork.

I was told it wasn't necessary to bring anything, except some health records if I had them, and Max if he was in the mood to meet the team. Very Casual.

Well, I'm not falling for this one! Last time they called me in for a simple tour it turned into a 2-hour identification meeting, during which they drilled me on all the milestones, therapies, specialists, surgery dates and every detail of his little life.  None of which I knew off the top of my head.

I left feeling unprepared, dumb, angry and tricked. Not a good first meeting.

So his intro to the Child Study team will be on September 27, 2012 ...let the covert preparations begin.

(next up, the "ME" book)

Preschool Step 1: Let the 20 day countdown begin.

Today I finally got Max's paperwork in to start the preschool I.E.P. process rolling.

I say finally because I brought it in earlier in the month only to be turned away with a pile of paperwork to return with before they accepted. I dotted all the i's crossed all the t's showed proof of residency, swore in front of a notary and got my paperwork stamped "done, 9/19/12."

So the first step is done.

They now have 20 business days to schedule our first meeting and begin our evaluation process.

I have my boxing gloves hidden under my sensible cardigan.

Bring it.

Sesame Place

YEP, I did it. Sesame Place alone with my 2.5 year old.

 

 

We got there on a Tuesday morning about an hour before the park opened, this was our first and second Good idea. The parking lot was empty and there was no line to purchase tickets.*

*We went to the guest services ticket counter, all the way to the right near the restrooms outside the enterance. Here they met Max and were more than happy to give him a disabilty ticket (50% off) as we didn't know how much of the park he would be able to enjoy or how long we would be able to tolerate the crowds. Based on this I felt ZERO guilt, this is why they made the disabilty ticket.

 He started out in pretty good spirts.

Upon entering we were guided to the Welcome Center where we met some lovely families with various Dx and, wait for it...of course a beautiful little 4-year-old girl with Ds!

And we were given an orange accessability wrist band to gain first access to rides.

Don't get me wrong, I don't believe in abusing the Disablity Pass to randomly cut lines that we can handle, but honestly we are so grateful this Pass exists. This way we got to enter each ride first to see if he could handle it, then exit swiftly when we realized it was too much. Chaos avoided and it made for a pretty good day. And I was happy to see how understanding the other parents were.

He wasn't able to handle any rides this time around, and the food here really sucked but...




He met Cookie Monster. Big furry hit.

We also had a blast in Ernie's Bed Bounce (they made me go in with him!) I only wish I had a pic of that.


And, if in doubt put Max in water.

 (Seriously, bring swim suits even if you think you won't need them!)

Overall, the trip was pretty fun with some tips:

1. Disability Ticket and Wrist Band =  Sanity

2. Getting there mid week and an hour before the park opened gave us time to acclimate before the crowds got big.

3. Found a "quiet place" for emotional cool downs, and at 1pm went back to the car to see if we could regroup. We couldn't.

4. Packed snacks and water, which we consumed within 1 hour of being in the park when no resturants were open yet.

5. If they tell you your kid can only play in Earnies Bed Bounce if you go in too...DO IT! It was one of the highlights of our day!

What we'd do differently:

1. Beeline for the climbing, physically active, and water activites first. My guess is that he'd be able to handle some rides if he was able to expend some of that toddler energy first!

2. Pack/bring ALL food (not just snacks) and MORE WATER.
3. Next time get a stranger to take a pic of this single mama WITH her son for once, whoops!
4. Not pay for preferred parking. If you get there early you're not that much further with regular parking.
5. Attempt a "show."
6. Bring my own bathing suit, he liked the water park much more than the regular park.

Lesson 1

When things get rough, sometimes all you need is a change of perspective....

Humph! This isn't working....

Try this...

That's right...

ah, it seems so clear now....

Feel Better? Good!