Diamonds!

Take a look at this absolutely stunning diamond ring from Stadheim Jewelers! This ring is 14K YELLOW AND WHITE GOLD “2US” FASHION RING BEZEL SET WITH 2 DIAMONDS, .40CT. Total retail value of this ring is $2000.00.This will be given to one lucky winner of the Diamond Champagne Raffle at the SKSL “Reach for the Stars” Gala on January 23rd! Tickets are $50 for this raffle will go on sale soon! The $50 ticket includes one chance to win this beautiful diamond ring generously donated by Stadheim Jewelers AND a glass of champagne to toast the evening!

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Diamonds!

2016 Reach for the Stars Gala!

I can’t help but take a deep breath and hold back the tears at the same time. Happy tears! We have had such a wonderful reception from the community when talking about our upcoming Gala! So many caring people ready to jump in and help create a community that not only accepts but welcomes our special kiddos with open arms. Thank you…

As of now, we have some great PLATiNUM SPONSORS lined up for our Gala. Platinum is the highest level of support! They are committed to helping our special families…above and beyond what anyone could expect. These business and, might I remind you…the wonderful people behind these business care. They really do care! They care about building a community that supports everyone! A community that I proudly call home!

So if you find yourself out and about in the North Iowa Area, stop into these businesses to show your appreciation and support! It is people and businesses like these that make our world a beautiful place!!

 

2016 Reach for the Stars Gala!

Power in Support

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Above: Taylor jet-setting to her first Phelan-McDermid Syndrome Conference.

When my daughter Taylor was diagnosed with Phelan-McDermid Syndrome she was not quite 2 years old. In fact, at the time her syndrome didn’t even have a name. They told me she had a chromosome deletion called 22q13.3 deletion. They also handed me a packet of very general information about chromosome anomalies and gave me a website. After giving us ALL they had, they said do you have any questions. My husband and I smiled and said nope, we are good. We were dying inside, yet knew they had nothing more to offer us. It took a few weeks to digest, okay maybe a few months. I started researching and I went straight to the website the doctor gave me. It turned out that Taylor was one in about 450 kids in the WORLD with this type of chromosome abnormality. It is generally a random mutation in most children who have this, also true in Taylor’s case. My husband and myself were not carriers of this mutation. We were virtually alone. No doctors in our area had a clue what this was.   Everything on the internet was not specific (not to mention scary) to Taylor so it was hard to gather facts that way. We were devastated. We had no idea what to expect or what was coming next. Words like non-verbal, seizures, heart problems, kidney problems, gross-motor delay, and yes-even mental retardation we flashing in our brains constantly. Alone. Scared. Helpless. Grief. Then, one night I was surfing around the website that the doctors had given us, www.pmsf.org. I found that there was support groups spread across the United States. I found that this very small group of people had found each other and come together to help one another. I joined a yahoo group that exchanged messages and posts about medical findings, questions, frustrations, and even triumphs. It saved me. Literally saved me. We found out that there was a bi-annual conference held in South Carolina where all of these people came together and met each other. We had to go. Soon people in our community were coming out of the woodwork to make sure we could attend this conference. The feeling of being alone was starting to fade, a bit. We began to receive support from everywhere. People we didn’t even know got involved. Our grief started fade, a bit. Finally, the day had come and we headed to South Carolina! It was the best week of our lives. We learned so much and met so many awesome people. We felt like we belonged somewhere. We felt like we fit in. We felt understood. People got us. AMEN. Now I am part of an amazing group on Facebook that is my saving grace. Without my Facebook group I do not know where I would be. I learn so much from the parents on that group. I have become great friends with people on that group, people I have never met. We help each other learn knew things about our kids. When I am confused, scared, need answers, or even to share our small victories- I turn to the group. Now the grief only hits once I awhile when you least expect it. Even though Taylor is still part of a very small group, now 1 in 1300, I know we are not alone.

 

Support can do so many things for you and your family. I don’t know where we would be without the support that our family has received from family, friends, the community, strangers, and my coveted Facebook group. Support has changed our family’s lives forever.

 

All of my experiences with support are why I joined Special Kids Special Love. I am there to give and receive support in any way that I can. There is so much power that comes from support. Without the support of so many I am frightened to think where we would be today.

 

Whatever is going on in your life, I strongly encourage you to find support! There is power and knowledge in numbers so surround yourself with like-minded people and gather everything you can from them. Talk with them, learn from them, cry with them, laugh with them, move mountains with them.

-Kathy

www.specialkidsspeciallove.org

www.pmsf.org

Power in Support

SKSL 2nd “Reach for the Stars” Gala

Well, we are doing it! We are having our 2nd GALA! It’s funny, when deciding should we or shouldn’t we, the answer was given to us! We had so many people ask, “Are you having another GALA?”, “When is it?” or even say, “You have to!!”  It truly warms our hearts to see how many people support SKSL and most importantly how many people want to support our special needs families. There are so many good…no GREAT…people out there.

If you aren’t sure what the GALA is, it is an evening where we share fun, stories, entertainment, a meal, auction, etc. This provides SKSL the opportunity to raise money to go towards all of the monthly events, resources, supplies, etc that SKSL provides all year for families impacted with autism/special needs. Oh, and of course the GALA is the backbone to help us with all of the costs that allow us to keep Sensory World open in the mall!

We’ve been asked, “Why don’t you just charge for your events and for Sensory World?”…. It’s simple, having special needs children ourselves, we understand, first hand, how expensive all of the daily therapies, equipment, dietary needs, school supplies, clothing, etc. can be. Let me give you one example, my son’s weighted blanket, that he needs, was $140. Now keep in mind, with the complicated sensory needs of our kids, that blanket won’t last and will need to be replaced. That’s just one item. Does insurance cover this…NO. Now add to this, many of our special needs families take off work or are unable to work because of their child’s special needs. It is difficult! SKSL whole heartily feels that we should not charge our special needs families for ANY of our events, resources, and even Sensory World. We want to lessen the burdens for our families….including the financial burden that comes hand-in-hand with special needs. Let me give you one small snapshot of a few of the things what SKSL has provided to our special families (other than the FREE events, trainings, and Sensory World)….iPads for communication, compression clothing, weighted blankets, special school supplies, special summer camp fees, books, tracking devices, handicap swings, household safety items, sensory toys/fidgets, etc.  That is just to name a few! So is the GALA important…ABSOLUTELY!

So mark your calendars and SAVE THE DATE, January 23rd will be the 2nd “Reach for the Stars” GALA! We are going bigger and better this year! The GALA will be held at Music Man Square and the delicious plated meal will be catered by Prime N Wine. We will keep you posted on the many great happenings during the planning stages of our upcoming Reach for the Stars GALA…so bookmark this blog and keep updated to the fun we have in store!

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SKSL 2nd “Reach for the Stars” Gala

Great strides in my eyes!

As I was packing my son’s lunch today I had to smile! I was so proud that we have increased the food he will eat to 4, get that…4 DIFFERENT CHIPS! Okay, here’s the laugh, they are basically the same chip but a different form of that chip.  All tortilla chips, no extra flavors but one is rolled, one is dipper shape, one is the regular tortilla and  one is flat strips.

Most may think I am completely crazy thinking this is a great accomplishment, but it truly is. Last year for his lunch I could not waiver from one regular style tortilla chip and look, it’s 4 now! So as I pack this lunch, I do it with a huge smile and hope for the future! Who knows, next year we might even add a flavored chip!

From one mom of a VERY selective eater to those of you out there…CELEBRATE THE LITTLE STEPS! Woo Hoo!

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Great strides in my eyes!

It’s time to head back to school!! Four tips for reducing stress!

The summer can be an opportunity to recharge and break from school routines, which is why September is often viewed as a mixed blessing. Parents of children with ASD are always trying to plan and prepare ahead of time. Unfortunately, we can’t account for every detail but here are a few tips for reducing the stress associated with back to school.

Tip # 1: Say Hello to the School Again

Greetings are such a big focus of the work we all do with children on the spectrum. And yet, it is the very thing we sometimes take for granted ourselves. Make time to meet and greet the key people in your child’s school for the upcoming year. Regular communication with the school is essential, so be sure to say hello again.

Start by seeing if a school professional can help you with just the little things at first: a visit to the school before it opens, practicing the combination of the lockers, a schedule of the times that things will happen at school, or some guidance on the key things to be learned in that year. It is best to start with small requests before you ask for the big favors as the year progresses (things like helping with the school bus, setting up some peer buddies, or managing a bully).

Once you find a school professional that is a good listener then you can begin to explain the nuances of your child. Help them understand who your son or daughter is beyond what can be gleamed from an IEP.

Tip # 2: Begin the Adjustment

Try to adjust your child’s environment to resemble the back to school schedule. Start by highlighting a calendar to show your child when school starts. Then begin to adjust your bedtime and morning routines slowly so that they mimic the school schedule. This will help you avoid a September shock.

Even if your child wakes, gets dressed and then falls asleep again – the rehearsal of the morning routine should save you stress when the first day arrives. Also try to plan lunch and snack time activities similar to the school schedule. If your body physically adjusts, then it will be easier to adjust emotionally as well. Think of it as jet lag for school – you will need a few days or weeks to completely acclimate, so start now.

Also, if there is time, select some educational topics that your child might be covering this year. Whether it be the IEP goals that will be addressed or some ‘curriculum’ related topics. Exposing your child to these things ahead of time can be of great benefit. Just don’t get frustrated or upset if your child is having difficulty at first. The learning curve is the steepest upon first exposure, so just remind yourself that you are making the task easier for when he/she starts school – there is no need to master the activity in August.

Tip # 3: The Schoolyard Hook

All developmental age ranges and genders have what I call a “Social Skills Hook.” This is something or several things that other boys and girls are interested in that your child can use as a connection to others. Opportunities are everywhere but we need to maximize those windows of social connections. While most children with ASD have varying degrees of restricted interests, you can still find a way to meld their particular interest into something social – then you have the hook.

If possible, visit the playground or recess area of the school (if it is a high school then the cafeteria or commons area where young adults hang out), to practice and rehearse the hook. If you are having a hard time finding a connection to peers then ask one of the school professionals for some guidance. They can sometimes facilitate an interaction and then offer you some advice on the best ways to maintain those interactions throughout the school year.

And finally…Tip # 4: Stay Positive

Living with autism can be overwhelming; it is all too easy to think about past trials and worry about ‘another’ school year. Back to school is an adjustment for everyone in the house, especially caregivers. But you can keep up hope if you stay optimistic. Find something that your child can look forward to and become excited about in September. This might help associate change with something positive. If you look for strengths then you will see what is possible and perhaps you just might recognize something that wasn’t there before…a learned skill, a different smile, or a new friendship.

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It’s time to head back to school!! Four tips for reducing stress!

Welcome to Holland………By Emily Perl Kingsley…Shared by Kathy Steenblock

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People have asked me what it is like when you find out your child has special needs.  When I tell people there is a grieving process they look at me funny.  How can you grieve a beautiful child?  There is no better way to describe what a parent goes through than in the words of Emily Perl Kingsley in the poem Welcome to Holland. I found the poem in the drawer of our hospital room when we were at one of our many visit when Taylor was young.  I pull it out and read it often.  Enjoy,

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Welcome to Holland………By Emily Perl Kingsley…Shared by Kathy Steenblock