#ReliefFund - Why it is SO Important to our Families

What is the Kinera Foundation Relief Fund?

As you know, we received that important letter from the IRS, determining Kinera Foundation a 501(c)(3) Public Charity, last week. I am still riding on that high!! This is so important to our Foundation because it will allow us to accept donations, or in IRS Terms "bequests, devises, transfers, or gifts", all tax deductible.

In celebration we are hosting our very first fundraiser, The Kinera Foundation Inaugural Virtual 5K. All proceeds from this event will benefit the Kinera Foundation Relief Fund.

I wanted to take a moment to explain why the Relief Fund is so important. When C was diagnosed, it took what seemed like an eternity to #1 understand how to go about seeking services for him, and #2 get him in for an appointment. Having a child with special needs changes the way providers bill insurance, and what may not have been a covered cost pre-diagnosis now is, BUT you have to figure that out, through a lot of trial and error and many denials from insurance. Then once you have the insurance thing figured out, you have to wait for an appointment to open up. Many of the specialists we were referred to, had 6-18 month wait lists. AND, that is only if your child has a diagnosis with a billable code, that any of this even applies. I have met more families than are on my two hands, who don't have a primary diagnosis that qualifies them for Habilitative (Speech, Occupational, or Applied Behavior Analysis Therapies) and other services/ treatments, and therefore they must pay out of pocket.

The year that C was diagnosed, our family spent close to $15,000 out of pocket in medical expenses. We pay for our health insurance out of pocket because Kell is self-employed. Our health insurance has a high deductible, so when I would get approval from the provider and our insurance that a service was covered, I would not pay for the appointment at the time of service. I knew that we had the deductible, and would request to make a payment up front, to reduce the cost of the bill, but was many times denied because of the way the provider's billing system worked. 30 days later we would receive bills for $1200, $1600, $750, etc. and they would be due in 30 days. Seeing the bills pile up and trying to figure out how we would pay was overwhelming. In years prior, our deductible was spread out over the year. These bills all came due within a matter of 60 days. Very few families can financially make this work.

When we started our strategic planning for Kinera Foundation, this was an area I wanted to address. They say that you really can't financially plan for a child - you just make it work, but it becomes more difficult to "just make it work", when that child has a significant health care need. I had a mother of a child without a billable primary diagnosis tell me that she paid $13,000 out of pocket for genetic testing to be done, in hopes that they could determine a better diagnosis for her daughter. ONE TEST - $13,000!!

The Relief Fund was established to help families under financial stress - I can't name a single family, regardless of income, who has a child with a special need, and does not stress about financial stability. In addition, when you are putting this kind of money out to help your child with a special need, discretionary funds fall short. What about the siblings? I have heard stories of parents having to choose therapy over recreational activities for their typically developing child. It is a terrible position to be in - we have been there. The look of disappointment and resentment leaves a heavy cloud of guilt on your conscience. 

There is an application process for the Relief Fund, we do not just hand money out to anyone requesting it. In fact, I am very proud of the application process. We release the grant quarterly, and the funding per quarter is based on the funds raised in the  previous quarter. Funds are paid directly to the vendor or service provider, to ensure the money is being spent for which it was allocated. We have a committee of 3 fabulous community members who report to the Committee Chair, a member of the Kinera Foundation Board of Directors. The Relief Fund Committee has no ties to the Board of Directors, or the Special Needs Community, and therefore is a non-partial entity.

Applicants can apply for the grant to cover many services, including:

Speech Therapy - Costs not covered by Insurance
Occupational Therapy - Costs not covered by Insurance
ABA - Costs not covered by Insurance
Hippotherapy - Costs not covered by Insurance
Therapeutic Riding
Advocacy
Medical Devices - Wheelchairs, ramps,  braces,etc. - Costs not covered by Insurance
Assistive Technology - Costs not covered by Insurance
Physical Therapy - Costs not covered by Insurance
Behavioral Consults
Camps
Social Activities
Emergency Funding, i.e. rent relief, electricity - With proof of financial hardship

Why am I giving you this information?

There are so many families struggling, so many who do not qualify for assistance, but need help. There is a gap that needs to be filled, and we want to help fill that gap. Families who's annual salaries are too great to qualify for help, but still struggle financially, families who don't have a diagnosis which covers the therapies and services their child desperately needs, families who have to choose treatment for one child over recreation for another... These families need help, and have very few resources to turn to.

By supporting Kinera Foundation, by running for a cause, or simply making a donation of your choosing, you are making a direct and positive impact on a family in your community. When we say ALL proceeds from the Kinera Foundation Inaugural Virtual 5K benefit the Relief Fund - we mean ALL. We chose a virtual race because the overhead and planning costs are minimal, allowing us to ensure maximum funding for our grant.

While it is Autism Awareness Month, I don't ask you to run to raise awareness. I ask you to run on behalf of the kid next door with ADHD, your cousin with Intellectual Disability, the child in your son's class with Epilepsy, and the little girl who doesn't have a diagnosis, but has significant delays and medical needs.

For more information on the Kinera Foundation Virtual 5K, or to register:www.kinera.org/virtual-5k.html
To Donate: www.kinera.org
To learn more about the Relief Fund and how you can help: Christy@Kinera.org

Thank you Chuck E Cheese

Tales of a Sensory Friendly Event

We went to Chuck E Cheese on Sunday. Typically I avoid that place like the plague, because when you go there, you just may come home with the plague. Additionally, it is loud, crowded, kids run around with little supervision, and I end up with a headache, I get anxious, and quickly become the obnoxious helicopter parent.

Why, you may ask, did we go to Chuck E Cheese, if it is such a terrible experience? Because of this:

The Glen Burnie Chuck E Cheese hosted it's first ever Sensory Friendly Morning, and we were so thankful to be included.

Sensory Friendly Events are becoming more popular, as awareness for the need expands. With the lights dimmed, less children, earlier hours, our children were able to play their favorite games with no wait time, climb through the overhead tunnels without physically superior children pushing their way through, one on one time with the beloved Chuck E Cheese, and so much more. There was no judgement from other parents, there was a sense of community, though the event lasted only 2 hours.

Before C's diagnosis, I don't think I would have understood the need for these events, I don't know that I would have given it a second thought. Now, we live for these events - more for my sanity than anything else. While I don't think that C understands his diagnosis, or even has an inkling that he has additional needs, I am hyper sensitive to it. C has no physical signs of a disability, and now that he is lacking his two front teeth, it is clear that he is no longer the toddler that his body language and communication skills indicate. I loathe going to crowded, kid infused, loud public places. I anticipate the worst, mentally prepare myself for the multitude of situations that can occur. Of course, we can't live in a bubble, we have 2 other children who deserve to experience all the joys of Chuck E Cheese, Disney, Museums, the Zoo, and even the mall. And to top it off, those who don't know C, don't understand his behavior, don't understand why he won't answer them when they ask a question, or make a request think I am raising a rude child, when in reality, it is their lack of understanding that can escalate a situation.

Knowing we can enjoy a place like Chuck E Cheese without having to be hyper-alert, that C is among children, families, parents and employees who have a deeper understanding of his need, means the world to me. Furthermore, when these events are advertised and held, we continue to raise not only awareness, but acceptance, of our children with varying needs.

To those that allude to our children being entitled, you couldn't be more wrong. Just as a person who is blind should have access to brail, children who cannot handle the sensory overload that is common to venues like Chuck E Cheese, should have access in a way that is sensitive to their needs.





The attached pictures depict just some of C's moments of pure joy. We have no less than 15 pictures of C riding the Chuck E Cheese Car (picture on the left is of C admiring his picture printed from the ride). He played a racing game that required him to jump on a built in pogo stick in order to make his character move. He used the mallet to "Wack A Mole". C made eye contact with Chuck E Cheese, and introduced himself. He danced to "Head, Shoulders, Knees and Toes" with the other children. He tried his hand at Ski Ball (with assistance). There was no limit to what he was able to try, he was able to take his time, and he chose what he wanted to do, without the pressure of the next kid behind him waiting for a turn.

Again, we couldn't be more grateful for the opportunity, and will certainly participate in future events that this Chuck E Cheese location hosts.

The Foundation - Building Blocks of the Future

I get asked a lot "how do you do it?". I always assume they are addressing my having 3 boys, and I say that "I am very lucky to have been able to leave my full time job so that I could focus my efforts on raising my 3 boys". A few days ago though, I was asked the same question, but just felt the context of the question was different. They were asking, indirectly "how do you keep your sanity while managing your child who currently is dropping to the floor while simultaneously trying to run away, with a scream so high pitched the neighborhood dogs think they are being summoned to a party". And that's when I smiled, counted to ten, picked my boy up, told him "no" again, and said "with patience and perseverance".

The thing is, having a child with special needs is more rewarding than it is difficult. There are times when we think that we won't get through a certain phase (Potty Training for instance), or when we feel in our hearts how much harder raising C has been in comparison to the other 2, BUT... the joys that child has brought our family, the humor, and humility he shows us everyday, the life lessons he has taught us, are more valuable than any number of life experiences previous to having him.

What does the Future Hold? 

 

I always knew I wanted to be a mom. I wanted to be a great mom. I wanted to be the house that all the kids in the neighborhood had to come to. I wanted to be the confidant, the friend, the stern voice, when needed. I knew my destiny was motherhood. I have said so many times before, that "the diagnosis" was life changing. We had to go through the stages of grief, to realize that it wasn't just C's future that we no longer had a clear vision of, but our future as well. I think the hardest part has been long term planning, taking each day as it comes. I am a planner, and not knowing what life will look like in 15 years has been frustrating.

The thing is, none of us really know what our future holds. We have all asked, "what does that mean for my child's future?", but we can't really determine any of our children's future. We lay the foundation, but ultimately our children are the one's that pave the path to their own destiny. I always envisioned A as an engineer or architect. He can build intricate and extravagant creations from Lego's, he has always had the ability to do so. He, however, has always expressed interest in acting, directing. From the time he was a toddler, he would set his toys up on stage, and direct us on how to act, what to say. We thought it was just a phase... really, what 2 year old understands what actors do, and have interest in that field? Well he persisted, and despite my dreams of MIT, he has paved his own way, and wants to pursue acting. After 10 years of interest, it is our responsibility to help him go after his dream.

When we get "the diagnosis", we grieve the "what could have been", then we try to reinvent, "what will be". We focus our efforts on fostering our children's abilities, how to ensure a fulfilled life, while still balancing our personal dreams and goals. It repaves our future, and lays a new foundation for our way of life.

BUT... in those moments of reinvention, come moments of triumph, hope, light, laughter. There will be many bends in the road. There will be times where we aren't strong enough to go on our own. In those times, we will rely on our family, our friends, our own support network to help us build and rebuild our foundation and path. And in the meantime, we will continue to take each challenge in stride, we will cherish each of moments of triumph, no matter how great or small.

A Book in Progress

Preface:

 I started writing this a few weeks ago. I am not sure where I was headed, other than I have this continuous thought, that no matter how I plan, how many questions I ask, I will truly never know what the future holds for our family. I will never know what the future holds for any of my sons... They will learn, grow, and make decisions that will guide them towards their future, and I am here as a support, as a mentor, I am here to instill the values, beliefs and morals that are important to me, but just as I have done, as I have grown older, their beliefs will become individualized to fit their needs. We crave to know our children will be contributing members of the community, but to know, is different than to hope. To want is different than to be, and only time will tell what the future holds. 

I have spent so much time with this internal battle - praying to know what will happen, and allowing myself to live in the moment and do my best to guide the best possible outcome. For reasons beyond my understanding, I worry about C much more than my other 2 children. I know A and O will have bright futures, though I don't know what that really means, but with C, it seems blurry. I struggle allowing myself to believe in a future that I don't yet understand. I worry that by believing, I may become complacent, allowing something to slip through my fingers. By hyper-focusing on the future, I fail to look at the amazing and everyday accomplishments taking place right before my eyes, and with all of my children. 

So in summary, I like the turn this piece took. I like the reminder that we all have a book in progress, and it is up to us to update the pages, ensuring the outcome we desire. We pass the book onto our children to write on their own, as they take the reigns of decision making, and as we pass the torch, we embark on our own new chapter. 

Sometimes we just need to be able to say what we are thinking, out loud, with someone listening. Someone who won't judge, someone who understands, someone, who though may be on a different journey, may also be traveling on a parallel path.

Telling our story brings me peace, gives me hope that by telling our story we will give others the same confidence, the same ability to share. Sometimes healing lies in hearing words hard to say, and spoken out loud. Sometimes joy is found in moments that seemed inconsequential, but meaningful none the less. Sometimes not speaking, but listening to others stories gives a sense of relief, that you truly are not alone.

Our story will continue, there is no end, the book will continue to be written, and the plot will constantly change. We continue to work hard to better ourselves, our family and help those around us understand how our story is just the same, and yet different from theirs. No one comes with their story written from start to finish. We choose different paths, leading us to different destinations, and while on our journey, we change the setting, the details, and the content of where and why our story takes place.

We sometimes try to jump ahead, to get a sneak peak at what the outcome may be, we plead to know the ending. We ask those around us, to give us a glimpse of the end destination of the characters headlining the show, but as we know, there is no definitive outcome. As the story takes place, the end is constantly changing, shifting. What may be the end today, will surely be different tomorrow.

And so we share, as we experience, we hope that as we share, we help to guide the outcome for not just ourselves, but those around us. And just like any good book, the end will provide us yearning for more, wanting to savor each and every detail, and a desire to relive the past chapters, have one last visit with the characters we grew to love.

Special Needs - In Reverse?

Can Special Needs Also Encompass Gifted and Talented?

Special needs, to me, specifically in the school, has many meanings, beyond the traditional. This month we have been assessing O, but rather for Special Needs in the traditional way, his needs are unlike those I typically write about.

O is gifted. I know we all feel our children are gifted and talented in their unique way, but he is gifted academically. At two he knew all of his letters, was able to put together 25 piece puzzles, and was beginning to recognize sight words. He fought hard to keep up with his brother that is four years older. He was potty trained in 24 hours. Give the boy a challenge, and his competitive nature takes over, and he does everything in his power to succeed.

By three he was reading independently. His favorite book... a dictionary. he wanted desperately to understand the words that grown ups around him were saying. He made it through the Children's Dictionary in a week, and quickly moved on to the Webster Edition.

A was in 1st grade, and O was enthralled with his homework assignments. He wanted homework too, so we purchased Pre-School Workbooks to encourage his love of learning. We quickly realized that he had mastered the skills presented in his age appropriate workbook, and moved on to the Kindergarten Lessons.

By 4, he was able to write all of his letters, his name, and he had basic addition and subtraction facts memorized. You could see the wheels in his brain turning, as he was determined to solve problems in his head, without the help of his fingers and toes. He was far beyond his Pre-K peers, and his teachers also embraced his love of learning, by trying to take the lessons they had prepared for the class, and altering them to accommodate his need for a challenge.

By Kindergarten O was reading the same books as A, desperate still, to stay on pace with his 5th grade brother. He would complete his Kindergarten homework assignments, and move next to A to review math facts along side his brother. It became a game... could we challenge O, and stump him once and for all? He learned the terms multiplication and division, and quickly was able to process those facts in his head. We broke the terms down... 4 times 5 means 4 added 5 times over... and he would count out loud, "4, 8, 12, 16, 20!!!". It seemed there was no problem too large for our boy to solve, and he loved it. We would go around the dinner table trying to stump him, and rather than become frustrated when the answer was wrong, he would ask how to solve it correctly.

During our last Parent Teacher Conference of his Kindergarten year, we asked the teacher what we could do over the summer to foster his love of learning, and ensure that he didn't loose his enthusiasm, his desire for a challenge, without burning him out. It became clear that we worked so diligently on math facts, that his writing and comprehension skills had plateaued. He was now right on track with his peers, rather than ahead.

We created a reward system. We encouraged our boys to choose books from the library, and then they were to write a journal entry on what they read, or even what they experienced during the day. For every page they logged in their journal, they received an hour of electronic time. They could bank their hours, to redeem all at once, or they could use them as they earned them. We did this for the entire summer, and the end result, for both A and O, was what we hoped... Both boys are off the charts in Reading Comprehension and Language Arts.

As the year has progressed, the gap for O has increased. He finishes his work ahead of his peers, he reads his assignment, and then pulls out his novel while the others continue their work. His teachers have provided as many opportunities as they have been able, to continue to challenge him, but with a class of 24 students, it is hard to teach to just one. We continue to work at home, challenging him with math facts, letting him check out books from the library that are intended for an older audience, and he continues to lurch ahead.

SO... we requested an assessment for Advancement. The request and subsequent meeting is as arduous as a request for an IEP. As a matter of fact, the meeting to review the assessment was very similar to our request for an IEP. Many of the same players sit at the table, but rather than Special Educators, you have Specialists, reading and math. The process is much the same, testing upon testing, IQ tests, and ending with a thorough psychological evaluation.

Special Needs indeed. O is in need of an academic environment that continues to challenge him, fosters his desire to learn, and is executed with his specific needs in mind.

We focus our efforts on our children with special needs, and advocate for their best educational environment. We need to do the same for our gifted children, who are special in their own and unique way. While I understand that there are literally thousands of children our school system has in their care, we, as parents, need to ensure that our children are getting the educational services they are entitled to. Just as I feel when walking into an IEP meeting - "Am I asking too much", "What accommodation can C live without, and what is essential to his continued academic growth" - I found myself asking, when walking into O's meeting. I had the same anxiety, the same reservations, "How special is my child, really?", "Is he really so outside the box, that he simply cannot make his way back in?", "At what point am I asking too much, and what determines how much is just right, and I can't fail my child by asking for too little". It is daunting, but as I have learned, I am my child's best advocate, and so fight I will, for what I believe will provide the best academic outcome for O.

IF AT FIRST YOU DON'T SUCCEED, TRY, TRY AGAIN

We don't know how resilient our children are, until we give them an opportunity to show us. Yesterday C had a dentist appointment. Two weeks ago he watched a cartoon that showed the main character visiting the dentist and losing a tooth. The Tooth Fairy visited the character (I can't remember which cartoon it was, but I think it was on Disney Jr.), and from that day on, C asked daily to visit the Dentist and have the Tooth Fairy visit. Of course he asked in his own way, "We have to go to the Dentist today, I have a loose tooth and the Tooth Fairy needs to come."

Many of us have anxiety visiting the dentist, and because of our anxiety, I think we tend to pass the fear on to our children. Add in a cognitive, developmental, sensory or attention issue, and there is a potential for disaster. When I made the appointment, I made sure that the team at the office had updated their files to show C has Autism. I didn't realize that I was nervous, until C got into the chair. C however, had no anxiety. He climbed right into the chair, looked the Dentist in the eye, and smiled.

C with Dr. Katz

Our visit was perfect. C was uncomfortable with the buzzing contraption they use to clean teeth, squirming, but not complaining. He didn't bite, didn't yell out, and remained in the chair. He had no cavities, no loose teeth, and his oral hygiene is top notch, according to the Dentist.

After the clean bill of health, the Dentist, Dr. Katz, looked me in the eye, and said, "C did amazing!". My eyes welled with tears, and I let go of the breath, I didn't even know I was holding. Trained at Kennedy Krieger, Dr. Katz has a complete understanding and acceptance of our children's needs. He was patient, accommodating, and was able to work quickly and efficiently.

Having a dentist that is calm, while working on our children, and in addition, understands our children's needs, on a level greater than the average, proved to be a key component to our successful visit. Putting my mama fear to the side, and acting as if a visit to the dentist was as common as a day in the park,  ensured C had no anxiety.

I know that I sometimes cancel plans, don't attend functions or parties, and plan our family activities around C's past successes. What I tend to forget is that I will not know how C will react to a situation, unless I put him in that situation. C's success is based on the experience I allow him to have. If we keep him contained in the safe bubble of our home, how will he ever learn to navigate the world around him successfully? My fear cannot hold him back. My sensitivity to others response to his Autism, is my own issue, not his. What I forget is that the community around us is learning, becoming aware, more accepting of his needs and response to his environment. If I encounter someone less understanding, it is my responsibility to try to educate and encourage acceptance.

There will be failures, I will attempt activities that just won't work with his needs, but I have to try. And if I encourage C to try, and try again, maybe he will learn to tolerate activities that we never thought possible. If we, as a family, surround C with guidance and support, and contain our own aversion and fear, if we try, maybe those activities we thought were going to be failed attempts will be successful and natural, just as a trip to the dentist turned out to be.

For more information about Dr. Katz practice: Katz For Kids

Disney Experience, Part II

 Top Ten Preparation Tips

It has been two months since our visit to Disney, and I feel like it was just yesterday. We went hopeful and yet skeptical. We didn't know how C would take to the crowds, the scents, the sights, the larger than life characters, he so lovingly adores. We knew that there would be moments of sensory overload. We knew that there would be challenges, what we didn't foresee was his ability to overcome those moments.

Our trip was a balancing act. It required planning, preparation, teamwork, and sometimes a zone defense to ensure that we met C's needs, while also ensuring everyone was able to enjoy the vacation. With 3 children, pre-teen to special needs, I am proud to say we accomplished everything that was on their "must do/must see" lists.

If I were to break down our trip into the top ten things you must do in preparation for a trip to Disney, specifically if travelling with a child who has special needs, it would look like this:


1. Reserve a hotel, rental home, condo, or suite that will fit your child's needs best.

We have stayed on Disney property, rented homes and condo's and have tried to make it work in a hotel suite. Our best bang for our buck, while also best suiting C's needs was renting a home just outside of the Disney property. While we had to drive to the parks everyday, and pay parking fees, we also had more room to spread out, were able to bring items from home to make the space more familiar, and the icing on the cake... a private pool and arcade room. We rented the home with with my husband's twin and his family. The cost for a week in the rental home was less than we would have paid in a hotel, with many more amenities. Another bonus... a full sized washer and dryer ;)

2. Stick to a schedule.

If your child wakes early, eats breakfast, watches a cartoon, has lunch at noon, a snack at 2pm, dinner followed by bath and a bed time story - stick with it. Your child is going to be filled with so many "new" experiences, even if it isn't your first trip to Disney. Rather than force a new routine along with new experiences, new people, a new environment, maintain the normalcy of their routine. The parks allow you bring in food and drink, take advantage of this! We always bring a cooler stocked with sandwiches, chips, fruit, water bottles, candy. It will help keep you on schedule, even while waiting in line.

3. About the lines - Use the DAS, plan ahead, and for God sake, don't promise to take your child on a ride without speaking to the ride attendant first.

The DAS (Disability Access Service card), allows for those with disability to use the fast pass lane, without holding a fast pass. Plan out the rides and attractions that are a "must do/must see" before entering the park. You will want to have this ready to fully take advantage of the DAS and fast pass. They key to success is to visit Guest Relations as soon as you enter the park. There they will be able to tell you ride times, fast pass availability, where you may need to use the DAS, where a fast pass will work better, or where you may not need anything. They will also help you plan how to best accomplish your "must do/ must see" list.

If you are using a DAS for a particular ride, my greatest piece of advice is to send one adult to that attraction. Explain you have a child with a disability, and they will either issue the DAS card for that ride, or indicate that the ride can accommodate your child now. If you are issued a DAS card, take the down time to see a nearby parade, visit a character, or ride a ride with a short wait time.

We survived lines, wait times and the DAS Card by keeping C out of the loop. We knew what attractions and rides were important to him, but never made a promise or indicated that we would see something "now".

4. Stroller as a wheelchair - If your child can still fit in a stroller, DO IT :)

C is 5 and weighs nearly 50 lbs. For a typical child, he may be too big for a stroller, however for a child with special needs, it is essential. We have even considered purchasing a stroller that accommodates a larger child. When vising Guest relations (upon arrival to each park you visit), explain that your child has a disability and that you would like the "stroller as a wheelchair" pass. It is that simple. They will strap a red sticker to your stroller that has a picture of a wheelchair on it. The stroller provides a safety net, it allows easy maneuverability in crowded situations, and  when used as a wheelchair, allows you to take it right to the attraction.

Disney has an amazing imagination. Every ride, every attraction, is designed to target each of the five senses. For most, it makes waiting in line more tolerable, for kids with Sensory Processing Disorder, it is overwhelming, and can have the opposite affect that was intended. With the stroller, C was able to maintain his personal space, throw the sun visor over top of him, keeping sensory overload at bay. For the rides that are not wheelchair accessible, you are able to completely bypass the line.

5. If you are driving, consider a Handicap Pass for your car.

I had mixed feelings initially, when my husband and I discussed this. I felt that perhaps we were taking advantage of a situation. I discussed it with our pediatrician, who must sign the paperwork for the pass to be issued, and he felt that it was in our child's best interest, and for the safety of our child and family that we receive the Handicap Pass. Now that we have it, I don't know how I survived without it. Have you ever walked through a crowded parking lot, maybe with groceries in hand, other children meandering behind you, while struggling to maintain hand contact with your special needs child. Then suddenly your child drops to the ground, splays out, and becomes dead weight? It happens regularly to me. Knowing that I can secure a parking spot closer to our destination gives me piece of mind, that I can safely walk from point A to point B.

Disney's Handicap spaces are almost directly in front of the park's entrance. If you need a quick getaway, the last thing you want is to have to hop on the tram and pray that you remember the charcter's name of the spot where you parked.

6. I mentioned it before, but it warrants mentioning again - bring food with you into the park.

Picture the mid day heat, a morning full of parades and rides, a DAS card for a ride that isn't good for another 1/2 an hour, and you have a handful of crankiness staring at you. You would run over to the nearest food vendor, but everyone else seems to be having a serious case of the"2:30 feeling". And then you remember, your cooler full of your child's favorite snacks and drinks sitting in the bottom of your stroller... Crisis averted!

Let's face it, one can only take so much of fried, greasy, amusement park food. At some point your body begins to crave nutrients, and you don't want to spend buku bucks on the good stuff, snack money should be reserved for the special treats. This is also where having a refrigerator in your temporary home is essential.

7. Don't overdo it.

If you are planning a 7 day vacation, don't expect your child to be able to survive 7 straight days of parks. Goodness, I would be surprised if you could survive 7 straight days of parks! We have found, in our 5 trips to Disney in the last 7 years, that 4 days of Parks is just enough. We feel that the Magic Kingdom and Hollywood Studios are our "must do" parks. Sometimes we visit Animal Kingdom (the safari ride and the Lion King show alone are enough to make you go at least once). If you have a child that loves animals, is inquisitive, and has a passion for fact finding, Animal Kingdom is great! It reminds me of an interactive zoo, with rides and attractions to keep everyone happy. Epcot is fabulous for those that enjoy different cultures, cuisines, and there are a few awesome rides, including Soaring and Mission Space. We almost always visit the Magic Kingdom a second day, but if you have never been to Disney World before, consider visiting all of the parks. We purchased Park Hoppers only once, and it was when we stayed on Disney Property. Because we had free transportation between parks, it was nice, but not necessary. If you are trying to remain frugal, don't do it ;)

We try to put a day between each day of parks. It allows us to rest our bodies, enjoy our vacation as a family, and visit other area attractions. Downtown Disney is fun, and has no entrance fee. Again, don't overdue it!

8. Download the "My Disney Experience App".

This app has maps of all the parks, allows you to map out your day, manage meal reservations, and sets reminders for upcoming parades and attractions. We used it everyday, multiple times a day, from initial vacation planning through our last day of vacation.

9. Take advantage of Photo Pass.

The photographers are strategically placed for the perfect photo opp, and they will also snap a photo with your camera or phone.  The photographer will issue you a card that you can carry around with you for the duration of your trip. When you see a photographer in a location you would like to have your photo taken, simply hand them the card, and it will upload to the website. You will need to create an account to access your photos and of course there is a fee, but you have the ability to select and choose the pictures you want, and of course, there is no obligation to buy.

10. Remember to have fun.

It is not often that our family is able to truly disconnect from the fast paced world and enjoy time together. It was a conscience decision to put work aside and really connect, really take part in this vacation with our children. Making the decision to be a part of the fun, to embrace each moment, and live in the now, is what made this trip so memorable. We each have our own and separate "favorite" moments. We each accomplished everything on our "must do/must see" list, and we certainly made "magical" memories.

This trip is possible, and fun, with children and adults with all abilities. Disney has, in our opinion, lived up to their promise of offering inclusive fun for all. Plan ahead, be prepared, and go with the flow. If you don't allow for the opportunity, the opportunity may just pass you by.

The File Cabinet

A Verbal Stim, or Breaking into the Conversation?

"Mommy, where are we going?"

Did you hear that?? He asked a question, as I was getting his shoes and socks on, as I was preparing him to leave the house.

"We have to take your brothers to wrestling practice."

"Can we go too?"

Did you hear that?? A two part exchange? Real conversation??? One that is relative to what we are doing, what we are talking about. One that is not scripted, pulled from the files of shows and movies memorized. A conversation.

This child, I was told, would be able to speak...one day. To what extent, was in question. Just last year, it was suggested that he would not succeed in an inclusion environment, that he would be provided 1:1 instruction in a self - contained classroom. I fought. I fought hard.

Having a child model behaviors of his peers is what our children need for success. The lessons learned from "typical" classmates can be greater than lessons learned through instruction. Our children need to play, with one another. They need to foster their imagination.

Stop the scripting, I was told. It is a verbal stim, I was told. It will suck him into a world that can become dark, lonely, detrimental. I disagree. His scripting has led to conversation. When he doesn't have the words on his own, he has words, in his file cabinet that he can pull from, and keep him engaged in the conversation.

I know there are many views on stimming, scripting, and other behaviors associated with Autism and Sensory Processing Disorder. I have sought advice and guidance from OT's, SLP's and educators. With their view point in mind, I have formulated the opinion that while his "verbal stim" can suck him into a world all his own, it also allows him to continue verbalizing. To continue practicing social skills and imaginative play, in circumstances that would otherwise leave him feeling left out of the conversation, fostering our belief that it is just a stim, and not his way of breaking into a conversation, in a time where words may otherwise fail him.

Allowing a child to go into a corner and spin the wheels of his Tonka, without engaging in the play, could lead to a dark and lonely world, I acknowledge that. Allowing the child to spin the wheels, and engaging with the child, creating conversation, asking "why", "how", facilitating conversation, may bring us into that world, and show that we respect the behavior, but also want to understand it, want to be a part of it. Taking these moments to build the relationship, and taking the time to ask questions to our child, shows that we respect their behavior, and respect them enough to question it, engage in it, and want to be a part of it.

There are many times, just like our conversation above, where I get C ready for the day, to go out, and while I warn him that we will be leaving, I fail to give him full details. With 3 kids, life is busy. Sometimes, it doesn't seem that there is enough time to fully explain where we are going, and why. With "Neuro-Typical" kids, this works. "We need to leave, now, and I will explain it in the car". Children with ASD, SPD, or other diagnoses, they need, and deserve more. My conversation above not only validates the need to constantly converse with our children, but that, despite their seemingly disinterest in our conversation, they are hearing what we are saying.

C constantly amazes me. Our initial diagnosis was hard. While he showed signs of one day being able to have conversational skills, no one could predict what those skills would evolve into. While we are still working on expressing needs and wants, slowly and surely we are making progress. Little reminders, like this, encourage us, as parents to continue pursuing more. To engage, to keep talking, even when it looks like he has lost interest. The words we say today, may be pulled from his "file cabinet" tomorrow, and help him express his needs in a way we never thought he could.

Going Gluten Free? Take it slow

Ten steps to a pantry makeover

Recently I have had quite a few parents ask about our diet for C and how we manage the expense of his dietary restrictions. When C was diagnosed, a blood test revealed that he had an egg and wheat allergy. Though he does not have an anaphylactic reaction to the allergy, it is clear that it affects his body. He will start to stim more, he starts to use jargon, and his pupil's even dilate. Though the allergist said these are not common symptoms of an allergic reaction, we have learned to expect the uncommon with C.

So, we moved forward with not only changing the way C eats, but have revamped our entire family's eating habits. Though we don't all follow a gluten free diet, we have removed many food items containing wheat or egg. We have also eliminated all dyes, all foods containing GMO's, have moved to primarily organic meat and produce, no longer eat processed foods, and limit sugar intake.

Before you decide that you need to do a complete overhaul of your pantry, I have a few suggestions to make the transition easier, and ease the burden on your pockets.

1. Don't eliminate everything at once! Take it one step at a time, one ingredient at a time. If you just stocked your pantry with cereal, bread, pasta, etc., try eliminating processed foods first. I have found that making things from scratch takes as much time as prepared foods, and can be a fun teaching moment for kids (and husbands too)
2. When purchasing organic produce, start with the "Dirty Dozen", as shown by Organic.org. These foods are listed based on the previous years pesticide residue testing and then placed in the "Dirty Dozen" category as foods recommended to purchase organic.
3. If you are eliminating foods to see if there are any behavioral effects on your child (or yourself for that matter), ensure that you only eliminate one food at a time, and give it a minimum of 2-3 weeks to ensure that it is completely removed from your system. This way you will be able to pinpoint any culprits of unwanted behavior.
4. Check with your butcher to find out where your meat comes from. Ideally you want to eat meat that comes from farms that grass feed their animals, allow them to free roam, and are free from added hormones and antibiotics.
5. Natural doesn't necessarily mean organic. This is confusing because there are strict regulations that come with the FDA Approved Organic label, whereas "Natural" does not have the same criteria. With that being said, local and small farmers don't necessarily have the means required to pay for the FDA to approve them as organic. Check with your local farmers. KI Farmer's Market farmers are very open about their farming practices.  Farmer's Markets are also a great way to support your local economy!
6. Shop the sales! I only buy meat when it is on sale. I usually only buy from Whole Foods, however Trader Joe's has great prices on Ground Beef and Frozen Chicken Breasts. I find out what is on sale and try to base my meals around those meats. This is where planning ahead is key!
7. Plan Ahead!! I always look online at Whole Foods and take a look at their weekly flyer. They also have deals of the day, and Facebook will usually update you on the good ones. Once I know what is on sale that I need, I plan out my meals for the month... Yep a month. I don't necessarily have a specific day in mind when I will cook a particular meal, but I have a plan for everything I buy. This helps deter me from overbuying and sometimes I can even stretch my meat over 6 weeks.
8. Know your staple pantry items and stock up when they are on sale. C Loves Z Bars, but they don't often go on sale. When they do, I ensure I stock up. I have found them as low as $.50/ bar, which is a steal! I also know that my kids like the same basic things in their lunch. We always have a fruit, a protein, a snack, and a sweet. Chips at Trader Joes are just $1.99 per bag!! There is no other chain store that has chip prices that low, and my favorite part... The ingredients are just potatoes, salt and sunflower oil. I can pronounce all of those ingredients!
9. Try making things from scratch. You pay for someone else to process your food, and I think it is a waste of money (in my personal opinion). I bread my own nuggets, cut my own french fries, mix my own pancake batter, etc. These are kid staples that can be costly. When I make my nuggets, I make a Gluten Free Batch, and a Panko Batch. Everyone can enjoy them, and they literally take 10 minutes more to cook than oven baking processed nuggets. The very best part... I know what's in them. There is no mystery meat!
10. Don't beat yourself up. If you can't afford organic, if you can't make your own nuggets, if you don't have time to shop in 3 different stores, don't get discouraged. By slowly changing your pantry over, slowly changing your eating and cooking habits, you are making a difference for the better.

We saw a difference in C's behavior within the first two months of changing his diet. I encourage you to speak with your pediatrician or family doctor, and take it slow. It is a hard change for parents and kids. We all get stuck in our habits, and routines, and changing a child's favorite foods, especially if they have special needs, can be a daunting task. I repeat... Don't make the changes all at once!

Some great resources for Gluten Free recipes and healthy eating are:
Trusted Table
Eating Right
Gluten Free Goddess
Whole Foods
Trader Joe's