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!

gala savedate front

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!

IMG_2247

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.

Kids-going-back-to-school

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

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

IMG_0646

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

Three Cheers For Summer…..NOT!

DSCN2334

Summer is here and so many families are heading on vacation, going to the pool or lake, spending times outside, and just having a great time. For parents with a special needs child however summer is a completely different ballgame!

I am a teacher so I really look forward to spending the summers with my kids, you know catching up on all those things we don’t get to do during the school year. With school out, the schedules that our special kids value within an inch of their being are gone. The familiar faces they know and love at school are gone. For those on the spectrum the social skills they have been working so hard on through the school year are slipping away. We parents struggle to keep them entertained in a productive matter so we can maintain our sanity. For those that work all year round, finding appropriate care for them while we are working is next to impossible. Our typical kids summer fun also suffers because we are often tied up with just getting through the day.

Vacations are tough in our house too. Many of our kids on the spectrum cannot be in hot environments for long periods of time. As I write this blog, my family is currently visiting my mom in South Dakota. My mom is out with my nieces and nephews and my oldest child at the swimming pool. I chose to stay back with Taylor to keep her safe. (See previous blog titled “My Inspiration”) If she is exposed to high temperatures for even a short time, her lymphedema* will flair up and the extreme temps could also trigger seizures. Taylor overheats because she does not sweat like typical kids. She gets very red and overheats quickly. I am crossing my fingers that the extreme temps settle down for the remainder of our trip so we can venture out to enjoy this beautiful state.

So for all of you parents out there counting the days until we get some routine and normalcy back in our lives, I GET IT! You are not alone. I try to enjoy as much inside as I do outside. We often do things at night so Tay can tolerate the temps. I also read as much as I can and communicate with her therapists on things we can do to keep working on those skills that took years to learn. Time eventually passes and we are back in school. For parents, it will be a nice reprieve from the chaos of summer. In my many Google attempts to stay sane, I came across http://www.playproject.org/summer-activity-ideas-for-children-with-special-needs/. Check it out. This link provides some great ideas and resources for things to do, vacations, summer camps, and general tips for surviving your summer. Or join a local support group like http://www.specialkidsspeciallove.org/. Just being around parents and children going through the same thing can be your saving grace.

Have a great rest of your summer!

-Kathy

*-(Lymphedema occurs when your lymph vessels are unable to adequately drain lymph fluid, usually from an arm or leg. –according to http://www.mayoclinic.org)

 

 

Three Cheers For Summer…..NOT!

Meet My Inspiration

Today I want to introduce you to Taylor!  She is 8 years old and has Phelan McDermid Syndrome.  (PMS)  PMS is a genetic form of autism and is very rare.  When Taylor was diagnosed at 18 months she was approx. 1 in 500 or so.  You can visit http://www.pmsf.org for more information.  She is still only 1 in approx. 7000 in the world even now.   We started genetic counseling when we were hitting a dead end trying to diagnose her.  Through pretty extensive genetic testing they were able to finally diagnose her with something.  Scientifically it is a very small deletion of the tip of her 22 nd chromosome.  Taylor has never spoken a word in her life…although  I believe with the extensive therapies and hard working teachers and staff at school, we are finally hearing Mama, Dada, and poop!  Yes poop!  We will take it!  She has extreme muscle delay/hypotonia.  She does not walk without the assistance of a wheelchair, walker, or adult.  She has really made progress in this department this past year.  She has a pretty weak immune system and frequently gets sinus and ear infections infections.  She was under cardiac care until she was 5 to watch her muscle development in her heart.  She overheats very easily because she simply doesn’t sweat like the rest of us.  This can be scary because it can cause seizures.  Tay has been through a couple of dental surgeries and has had tubes in her ears numerous times.  She has a lot of stemming behaviors and you can often find her chewing on her fingers and hand!  I list all of these issues that she has and I still consider myself, my family, and Taylor lucky.  So many kids with PMS have many other problems that Taylor does not.  Taylor is the happiest kid I know despite all of her struggles. She loves her siblings, her peers, and all people in her life.  She lights up when animals come around.  She loves music and repetative noises.  Although she cannot speak, she could hold quite the conversation with anyone who will listen!  Her sparkly little eyes will tell her story!  She brings joy to everyone that comes in contact with her.  She is my INSPIRATION.  She has taught myself and so many in our family what perserverance, love, and hard work really are!  Who inspires you?  Share your story on our blog today.

Until next time,

Kathy11023115_10152715015422338_1839324274_n

Meet My Inspiration

I Went Bat Crazy … In Public … On Mother’s Day

Mother’s Day is the one day a year we mom’s genuinely reflect on how much joy motherhood brings and the overflowing amount of love we have for our kiddo’s.  Not to diminish the other 364 days in the year, but this day is special.  For me, this day temporarily melts away the reality of how much work it takes to keep the household running.  As special needs momma’s, we all can relate to the hard work it takes to care for our special kiddos.  Then, throw in all of the extras that we are required of – hard work is an understatement.  But, on Mother’s Day I allow myself to momentarily live in a world of bliss where all is right with the world despite my everyday struggles.  This year would be no exception and there was no reason for it to be any different.  Typically speaking we avoid eating out unless the circumstance and environment is just right (minimal people, behavior, handling of sensory overload, etc..).  Today we made an exception.  To our surprise, our meal was pleasant (to our standards) with minimal outbursts and the typical stimming on the drinking straw wrapper, crayons or whatever was close by to ease the situation. We finished, paid the bill and were clearly ready to go as Jack said “bye” and tried escaping under the table.  He took with him a chocolate mint that ended up on the floor.  I quickly swiped the mint off the floor and tossed it on the table because I wouldn’t dare let someone see my child eat carpet fuzz covered chocolate.  That small action was the beginning of the end.  He laid on the floor screaming telling me his famous phrase “WAIT” while he squeezed his arms so tightly I could not pick him up.  Eventually, I was able to scoop him up and raced to the exit all while he screamed and kicked.  With the exit in sight I was losing my grip.  A lady was entering the restaurant; however she chose not to hold the door so as we waited for her to enter I had no choice but to put him down.  The meltdown continued on the lobby floor and worsened when we offered a brand new replacement chocolate.  He started scooting across the floor then quickly stood up, ran towards our table landing back in the floor continuing to scream.  At this point, it is safe to say that the entire half of the restaurant was aware of the situation and were all interested in the commotion.  I repeated to Jack that it was time to leave and then I hear my oldest daughter say “Can I help you?”  Now, I was pretty certain she was not talking to me and when I stood up a lady was nearly breaking her neck to find out what was going on.  I knew then it was time for a public service announcement so I held my head high and in a loud voice I looked around and said, “He has autism and this is a meltdown!”  Jack, of course, took this time to climb up in the booth searching for the carpet fuzz covered chocolate.  I told him the chocolate was gone and it was time to go.  He just looked at me as if he was trying to tell me he needed to find out for himself that it was gone.  My other daughter told him it was time to go and he so gently said, “Okay.”  I picked him up and turned around realizing you could hear a fork drop.  I looked at everyone and said, “We all okay here?  Okay!”  and we walked out.  I got to the car and I was hurt, mad, frustrated and any other word you can use to describe the situation, but mostly the angered over uneducated – unforgiving public.  I realized (again) that it does not matter what has impacted your life – if it does not impact someone else they are clueless.  However, there is a level of human compassion and understanding that does not have to know details.  A respect that is given when we see another person in need or hurting.  Stares are a given in my world.  Whispers are often.  Loud comments are common.  Fortunately, these do not impact my son, but they do, however impact me.  They are devastating to my heart when in that moment I could use a smile or just a space in time where everyone carries on with their own business while I handle mine.  So the next time you are enjoying a nice dinner out celebrating something special and you see someone that is struggling, remember that not every disability is visible.  What looks like bad parenting or a bad child may just be someone struggling with something far greater than your wildest imagination.

Like my momma taught me – kindness is free.

Lacey

I Went Bat Crazy … In Public … On Mother’s Day

Blog Beginnings!

Hello everyone! We, SKSL, have had the opportunity to connect with so many wonderful families that share a special story…our special needs children. We also realize that time is a rare commodity with all of our special activities, so have begun this blog so we can continue to connect, share, ask questions, etc. We hope that everyone will find that they are not alone and that we, SKSL, and others like you share in your special walk….we can do this TOGETHER!

Blog Beginnings!