By: Jane Kleinman
Your life as a special needs parent might never become "easy".
This is a reality many of us struggle with every day. On top of the IEP fights, dealing with PerformCare/DDD, the scheduling of therapists, the emotional ups and downs of successes and setbacks, the juggling of home, work, siblings, extended family, and regular daily life...
The relentless reality of this can sometimes hit us
like a ton of bricks.
It's enough to send us into the bathroom with a glass of wine just to get some peace, or to want to stay in bed all day.
I have been right where you are.
I felt like I was drowning in my responsibilities and that I would never again have any life of my own. I developed resentment toward my husband, who was struggling as the sole breadwinner so I could be home with my son to see him through his days of therapy, and then school. Occasionally, I got a night out, but I was so starving for fulfillment, that it never felt like enough, and then I felt guilty for feeling ungrateful. It seemed I could never get in front of somehow feeling BAD about whatever I was doing. No matter how overwhelmed I was with trying to help my son, manage the house, be a good spouse, and a good parent to my typically developing daughter, it never felt like enough, and no matter what I did, I always felt gulity! I was yelling at my kids, my husband….I was miserable.
I needed to learn a NEW way to interact with the chronic struggle of my own life, so I turned to a practice that had always helped me before I became a parent. Yoga had always taken me away from my stress, relaxed and soothed me, and helped me feel happier, but getting away from my life to practice yoga once I had my son seemed impossible. But I knew that I had to do something, so I made a commitment to start small. One yoga class whenever I could, just to get back into moving and breathing and feeling something other than despair. After a bit, I gave myself permission to be away from my responsibilities for 90 minutes a week, and you know what happened? Nothing. And EVERYTHING.
Nothing fell apart, and no disasters ensued. All my responsibilities were still there when I came back from class. But EVERYTHING about how I dealt with my life, how I handled the stress, how I felt about my challenging life DID change. I decided to pursue a long held goal to get my yoga teacher certification, and that’s when I really learned how to make my life my yoga practice, and nothing has ever been the same since. I still have challenging times, don’t get me wrong. My son is 16 (puberty stinks), and in many ways, this year has felt as bad as any of those earlier years, but NOW I have the tools I need, and the connection to a profoundly deep inner knowing that I am one breath away from less stress, one movement away from less fatigue, one meditation away from deep peace.
Until I learned how to bring the practices that I learned "on the mat" INTO my daily life, I knew that I'd continue to be impatient with my family, struggle to feel fulfilled, feel constantly overwhelmed by the enormity of my task, and forever feel inadequate to deal with it.
So, I learned how to breathe in the middle of a stressful situation and what kind of breathing would help. I learned to use the physical body that I have (with all it's perceived "imperfections") to bring me back down to earth when things felt like they were spinning out of control.
And most importantly, I learned to recognize, appreciate and CELEBRATE the monumental job I do every single day, and to be ok with myself even when I felt like I came up short one day.
THIS is how you handle it. THIS is how you go on when it feels like it's too much.
THIS is why I created
The Calm Within The Chaos,
A Yoga Circle for Parents of Kids with Disabilities
And I can help you to learn how as well.
we feel out of control.
This step-by-step guidance and loving support will help you to feel more relaxed, more able to cope with the challenges you face each day, and more like the person you may remember you once were, but have long ago put to the side because you think you must put all of yourself into your child.
For more information visit my Facebook at
By: Yasmine Burd Sidekick/Supervisor
With the start of school fast approaching, it can seem like a daunting task to get a child back in a school mentality. Below are 5 tips to help ease the transition from summertime to a school routine:
1. Go into the school prior to the first day. This is the time for the parent and child to find the child's new classroom and to become familiar with the route of arriving/leaving from the drop off location.
2. Prepare your child. Have a small conversation with your child the days leading up to school about school starting up. Change is difficult for many children and preparing your child early in knowing a big change in their schedule is going to happen will help with reducing a potential melt down and frustration. Have your child assist in the shopping for school materials. This will help to ensure that your child gets the right brand, color, or texture of the required materials, if your child is particular about their items.
3. Consistency is key. Establish a morning and after school routine and stick to it. The more consistent the parent and child are to following the routine, the more your child will start to develop independent skills. Practice the routines with your child prior to the start of school. Go over where their backpack will be, appropriate places to complete homework, etc. Also keep consistency with color coding and labeling school supplies. If one folder has the child's name, home room teacher and room number, then all folders need to have the same information. Furthermore, if a blue folder is labeled "Math," then the blue notebook needs to also be "Math.”
4. Be open and honest with your child's teacher. It can be overwhelming with receiving welcome letters and parent surveys to fill out, but this is the time to be detailed in your responses. Teachers want as much information about your child as possible in the first few days of forming a connection. You know your child the best and teachers are looking for any type of guidance to best support your child's learning. So let the teacher know what strategies at home work well with your child when he/she are frustrated or send in items that help soothe your child if it is a fidget item or chew toy to help with attention.
5. Continue the conversation at home. Talk to your child about their day and see if connections can be made with the learning that is occurring in the classroom to their own experiences. Having a brief conversation about their learning will help your child to process, understand, and generalize their new knowledge.
By: Jane Lynn – Owner Navigate Autism
About the Author:
Jane Lynn Britton, was a professional HR leadership trainer and coach for 20 years. She quit her career to homeschool her son, William, with autism. That was 8 years ago. Today, both Jane Lynn and William are stronger, more confident, relaxed and happy. William is back in school, and Jane Lynn partners with parents who want to create a more relaxed and harmonious life for themselves and to help their children thrive. She does this through her business venture, "Navigate Autism with Jane Lynn". Oh, and by the way, William is one of our Superheroes!
Avoid the stress of summer outings by using The 6 P’s for an Effective Outing
“We get to go to the store! Show me where you want to go!” When I say these magic words to my son, William, he gets so excited that he immediately gets ready and goes to the car with a wide smile and sparkling eyes. My heart is so full of love for him as well as enthusiasm for our outing, that I can’t even remember the day when I used to dread taking him out of the house. Yet, there was a time that my fear of his unexpected behavior and of everyone’s judgment kept me home. Not so long ago when we needed to go out, I was apprehensive and stressed. However, this changed once I decided to let go of the judgments from myself and others, and learned how to create effective and fun outings.
There are 6 key steps, which are very simple, and if you follow them one-by-one, you will see how easy it is to go on outings that leave both you and your child wanting more! Even in the summer time, when stores are crowded and people are more animated and loud.
Step 1: Plan
Don’t just show up. Plan before you go. If you can, check out the location before you go with your child. If it’s a small store or you are going to visit a friend or family member’s house, talk to them and explain what kind of outing you are doing and what you hope to accomplish, as well as what they might expect when you come. You can also ask for their help in some way in order to ensure a smooth outing, and to prepare them for your visit. Also, answer these questions for yourself:
Step 2: Prepare
This step is to think of all the things that you are going to need to take with you and to then pack them all before you leave. Some of these items may include:
One thing I would suggest is to put everything in a backpack that you will wear during the outing. This will keep your hands free to open doors, guide your child, help pick out items, help pay, etc. Also, wear pockets to put your keys into and small things that you may need in an instant.
When you arrive at the destination, ask your child to get the backpack out of the car. This will slow him down and keep him from hopping out of the car and running across the parking lot. It also gives him something weighted to carry, which helps to ground his body and focus his attention.
Once your child is focused and next to you, you can take the backpack and put it on your back. Now, after following these steps, you are ready to go….and your hands are FREE and ready to help your child in any way.
Step 3: Patient
Patience is key! The one thing we can count on is that there will be surprises. And since our children are so connected with us, as well as sensitive, they respond to our emotions. Therefore, it is not surprising that when we stay relaxed and patient, our children are more relaxed. And when this happens, they stay connected with us and listen better. They also don’t want or need to run or get away, which interestingly, helps us to be even calmer and it gives us more control of the situation.
Sometimes being patient is saying that it’s OK to leave the store or outing earlier than expected, even right after it starts. If your goal is to have a successful outing, but your child is not able to do that today for some reason, it’s OK. With patience, you help your child take care of himself/herself. This also builds trust, and the next time you suggest an outing, your child will most likely want to go, because s/he knows you will be flexible and respond to his/her needs with love and support. And, then with persistence, you can start to have longer, more enjoyable outings.
Step 4: Praise
Who doesn’t like to be praised or celebrated for what they have done? We want to motivate our children to continue to be calm, focused and to listen during the outing, and praise will help us achieve this. We can say things such as: "Thank you for helping me with that backpack." Or, "Nice job walking calmly with me into the mall." Every little thing that your child is doing is praise-worthy.
It’s easy to praise when they do something well. But, what is really POWERFUL and creates the most successful outing is when we praise our children even when they do something we don’t want. Because of this, they will calm down, trust us, and listen better. For instance, if your child takes the cart and runs through the store screaming, praise him/her for showing you that s/he wanted to go to a different part of the store...or that something was bothering him/her and s/he needed to go to a more comfortable place. Then lovingly tell him/her that a better way to do it is to walk calmly so s/he doesn’t run into or scare anyone. This will surprise your child, who is waiting to be reprimanded, because your child is smart and knows the behaviors that you like or call “good behavior”. And when s/he is feeling supported and loved, s/he will listen better and become calmer in the store.
Step 5: Put it to use
Giving your outings relevance and purpose not only teaches your children more about life, but also motivates them to want to go out more. If you're out shopping and you buy something, use it right when you get home. If you went to an event and you took pictures, print out the pictures, and show it to your child as soon as you can. All of this brings relevance and purpose to what you've done, and it inspires him/her to want to go on more outings.
Step 6: Practice
The final step is Practice! Continue to go on outings, because the more you practice, the more routine, comfort and joy you will build. I've had times where it's been stressful when we went out in the community, and as a result I didn't want to go again. But, I didn’t give in. I continued to practice and use these six P’s, and it eventually became easier. And today, my son and I both look for as many opportunities as we can to go out together.
By: Judy Saunders (Intake Coordinator/Supervisor)
For many of our Superheroes, the handling of “downtime” or unstructured time can be one of the most challenging times of the day. School or perhaps a day program has provided routine and structure in a supportive environment. In some cases, individuals may participate in competitive employment or volunteer opportunities within the community where expectations are clear, tasks are clearly defined; days and hours are scheduled. In addition, social opportunities and peer groups are an integral part of their day.
When they return home, the lack of structure can be overwhelming often leading to isolation, anxiety and regressive behaviors. Very often, parents at the end of their day begin the task of trying to identify and implement routines.
Sidekicks provide that valuable opportunity to add structure and routine to aspects of a Superhero’s day. Weekly schedules that include community integration and daily living skills lend goal oriented experiences culminating in productive and positive outcomes. There is so much potential for learning, growth and relationship building during supported “downtime.”
Being out in the community also helps reinforce and transfer skills such as money handling, social skills and maintaining appropriate hygiene. In addition, developing greater tolerance to those sensory and environmental stimuli that can often cause maladaptive behaviors can lead to increased self-esteem and greater self-awareness.
Just as important, the ability to make choices and invest in decision making and planning gives control and autonomy in the process. This gives way to self-satisfaction and enjoyment.
Learning how to manage “downtime” is hard. It requires time management, judgement, executive functioning and social skills to name few.
When families work together with their Sidekicks many of these skills will be addressed and Superheroes can rise to the highest level of expectation. That’s the upshot of supported downtime!
By Sarah E. Siering, M.A., BCBA
It’s hard to believe, but here we are, halfway between Mother’s Day and Father’s Day already! While I can’t make every Sidekicks parent a finger painting for the fridge or a macaroni picture frame (even though I’d like to!) I still want to take a moment to let you all know how much we here at Sidekicks appreciate you.
By: Robert F. Valluzzo
I continue to be curious how many families out there truly believe there is a simple cure in a bottle or in pill form to give your child to “Cure” them of this disease? I for one tried this type of medicine on my son. It cost me a lot of money and we never saw a positive result. Back in the 1990’s it was an injection of Pig intestinal lining fluids. It was available in Canada at the time and it was to have been a wonder drug. After about six injections in my son’s stomach area, we stopped the treatment. Why? Because it showed no improvement and I did not want to do something that might have hurt my child.
By: Adnan Ahmeduddin
Einstein once said, “If we knew what it was we were doing, it would not be called research.” Frankly, we still do not know a lot about autism; we do not know what causes it, what it is doing in the brain, and how to treat it effectively. Scientific research in 2016, and over the past few decades, offers glimpses into understanding more and more about the neurodevelopmental disorder which leads us to better solutions that alleviate the common hurdles those affected by autism must overcome.
By Sidekicks Chief Operating Officer Jamie Douglas
When Niko asked that I write something to help families who have children transitioning into adult services, my initial thought was to offer first some simple advice. Hold on, it’s going to be a bumpy ride. For many families, a great deal of time and energy was necessary to secure appropriate services for their children when they were entering into the educational system at the age of five or even younger. Years of seeking medical assistance, working, and sometimes fighting, with school districts, securing extended day or extended school year services was a hard and tiresome task for families who only wanted the best for the special needs child. For many families the hard work paid off and appropriate educational services were secured and most importantly funded by the department of education during these most important educational years.
As most parents will tell you, “In a blink of an eye” children are suddenly young adults standing on the threshold of adulthood. For many years we are consumed with thoughts of our children being accepted into a good college, hoping we as parents have done our best to teach them right from wrong, to be kind, responsible and successful in their chosen endeavors.
This however is a very different reality for our families who need to plan for their special needs child as they approach adulthood. The realization that they are starting all over again is daunting. Gone are all of the entitlements that come with the educational years. Extended day program – gone. Extended school year – gone. Speech therapy, occupational therapy, physical therapy, consultants and most importantly, transportation – all gone. Our families find themselves heading a top speed towards a cliff with seemingly little guidance on how to keep from going over the edge.
As a human service professional I spent over 35 years working with families and nothing was more rewarding as the 20 years I spent working with adults with disabilities. One of the biggest challenges was guiding families through the maze of state agencies and processes to secure the best future for their child. Currently the State of New Jersey is transitioning into a fee for services system which only makes things even more confusing. Here are some ideas and tips that I hope assist you in navigating your child’s transition into adulthood.
1. It’s never too early to start the process. By the time your son or daughter is 14, start talking with your school and child study team about the transition to adult services. Put together a transition team and begin discussing the following:
2. By the age of 16, with the students input, the IEP should state the need for a transition plan including community experience and educational requirements necessary to achieve his or her goals.
3. Before the age of 17, families should:
4. Prior to the age of 18:
5. At the age of 18
Note – At 18 your child move from a system of entitlements to one on eligibility. Specialized educational services may continue until the age of 21 in many cases
6. At the age of 21:
When reviewing the time line above it is easy to see why the earlier you start the better you are able to plan along with your child for their future and make it a successful one. It a lot of work but with the new fee for services system families have more options including: career planning, employment, community supports, specialized equipment as well as other supportive services. My best advice is to become as informed as possible and know your options. Talk with other families who are currently or have recently experienced the transition options. Become very familiar with the State websites and use their help desks to answer your questions. The Division of Developmental Disabilities has been very good at conducting webinars for families and agencies which are all available on YouTube. Individuals with disabilities are one of the largest growing populations in the State of New Jersey. There is a lot of power that goes with it. Use it to your advantage to gain the services your family member needs as an adult. Here are some websites to get you started on your journey to adulthood and hopefully make it a little less bumpy.
Autism Speaks Transition Tool Kit
Application to DDD Services
New Jersey Comprehensive Assessment Tool
Applying to Medicaid
Division of Vocational Rehabilitation Services (DVRS)
Applying to Social Security
Applying to Social Security Disability Insurance
Choosing a Supports Coordination Agency
Written by the CEO of Sidekicks Niko Antonellos
November 4th, 2016 marked three years of Sidekicks providing support services. I have written the following blog to share part of my journey; why I started Sidekicks and some things I took away from my experience thus far.
I want to thank those who believed in a kid out of college who had a vision and an idea. I am grateful to be part of many people’s lives. To all of our Superheroes, Parents, and Sidekicks, you all are like family to me.
Written by Community Resource Manager Bob Valluzzo
Ever wonder how normal people become a Super Hero let alone a Super Woman? Maybe, we have it in all of us, but for now let me tell you a story about Missy, Melz or Melissa Gaunt! However you know her, once you do, you become part of her family. What family am I talking about? The Missy Family of supporting others in need.