Michelle is from Westlake and has four children.

Which Connecting for Kids resources have you tapped into to help your child?
We really love Music Therapy & More and try to sign up every month.

The bad habit I picked up...
Giving her a tablet. It has helped her with music, songs and speech, but sometimes it's easier to give her that so I can deal with the other kids.

When my child's behavior gets out of control, I feel...
Stuck in a cycle of trying to calm her down, not knowing exactly what she may want or need. She doesn't always communicate "I need help”, so it's a guessing game.

The hardest thing for me to learn was...
No child is perfect and every child is different! It is so true, and hard to remember to NOT compare each child from the next. They all learn at their own rates, some quicker and some slower. My daughter was in physical therapy until she was about 2 1/2 because she was not walking. At the time, it never dawned on me that she could have a visual issue. After getting her eyes checked, she was diagnosed with multi-sensory processing disorder. I am still learning about the diagnosis and ways to help her calm down, process and learn. She also has a severe speech delay but has made huge improvements through speech therapy at her preschool. She has made so much progress this year. She can now walk up and down steps holding the rail or wall, but still needs assistance with bigger steps like our van and school bus. We are also working on the potty and different kinds of drink cups.

Is there anything else about your journey that you would like to share with other parents?
This is a journey and we are in it together!

By: Shannon Sonnhalter, BS, CCLS, Child Life Senior Manager (Enterprise Child Life) & Jessica Timms, BA, MS, CCLS (Fairview Hospital)

Cleveland Clinic Children's Child Life Services

Shannon Sonnhalter, Child Life Senior Manager (Enterprise Child Life)

Jessica Timms, (Fairview Hospital)

It is no surprise that the hospital is a scary place for anyone, whether visiting a patient, bringing in a patient, or becoming one. This is especially true for children. The machines, the beeps, the codes being called, and all of the unfamiliar faces can quickly raise any child’s or parent's anxiety.  At many area hospitals, including Cleveland Clinic Children’s, Child Life Specialists are available to assist and guide families through these healthcare experiences.

In healthcare settings, Certified Child Life Specialists help infants, children, youth and families cope with the stress and uncertainty of acute and chronic illness, injury, trauma, disability, loss and bereavement.  Child Life Specialists are educated and clinically trained in the developmental impact of illness and injury. Medical experiences without developmentally appropriate preparation and support can lead to feelings of fear, confusion, separation, isolation and loss of control. Our goal is to see hospitalization through the eyes of a child and address not only the medical issues but to enhance the patient experience in the process.

Child Life services are individualized to the patient’s developmental needs, abilities and concerns. Some of the most common child life interventions are: preadmission surgical preparation and tours, procedural preparation and support, therapeutic and medical play opportunities, sibling support, new diagnosis teaching, coping with chronic illness, and bereavement support. These interventions increase understanding, decrease misconceptions, promote positive coping and reduce fear, anxiety and pain.

The Cleveland Clinic Child Life Program employs twenty Certified Child Life Specialists throughout the healthcare system. You can find child life at the Main Campus Children’s Hospital, Fairview and Hillcrest Hospitals in addition to Beachwood, Strongsville, and Westlake Ambulatory Surgery Centers.  Child Life Specialists are available by appointment for various areas of the hospitals. This consists of pre-arranged surgery tours to prepare children for what to expect and normalize the surgery environment, outpatient procedures such as lab, radiology exams, and various other test and procedures.

To make an appointment with a child life specialist prior to a child’s visit, please call the child life department at 216.445.6454.  Please provide the reason for contacting child life, Cleveland Clinic location and a brief description of your request and a child life specialist will return your call within 24-48 hours.

Please note: Child Life Specialists are also available at other area hospitals and medical facilities. Please click the links below for contact information and description of services provided.

University Hospitals Child Life Specialists

MetroHealth Child Life & Education Program

Akron Children's Hospital Child Life Specialists

Eileen has four children and resides in Olmsted Township.
 
What do you do to relax?
Reading
 
What benefits has Connecting for Kids brought to you and your family?
The ability to connect with other families to get questions answered.
 
What has been your favorite Connecting for Kids resource?
Parent Mentoring
 
My greatest lesson learned...
Is that one can underestimate just how strong children are. My biggest fear for my children was social isolation. That they would be set apart from others kids, teased, or saddened about being 'different.' In contrast, my kids have generally taken their food allergies in stride. They care more about social opportunities, than what they can or cannot eat. If given the choice between going out with the theater cast/team and eating something different or avoiding the event, they choose the social event. They could care less about the Halloween candy, the fun is in the costumes and Trick or Treating. I am proud of the way they take responsibility for their EpiPens, and the way they self-advocate.
 
If I could go back in time and talk to myself the day we got the diagnosis I would say...
That my children would lead very normal lives, filled with friends and activities. My sons were diagnosed with severe allergies to dairy, eggs, tree nuts, peanuts, shellfish, coconut, and soy protein two weeks before Easter, in 2010. While I was already parenting a 5-year-old daughter with severe peanut and tree nut allergies, the dairy, egg, and soy diagnoses were devastating. How could I give these boys a happy Easter, much less a happy life? Food is a cornerstone of every holiday and celebration...chocolate Easter baskets, Christmas cookies, Thanksgiving feasts, celebration dinners, wedding buffets...all forbidden now. Not to mention pizza with the team, or ice cream with the theater cast. What about vacationing? How do I manage visits to out-of-state relatives? My sons were only 3 and 1 years old. How would I get them through school? I was scared, furious, and overwhelmed. To further complicate matters, my youngest son was managing severe oral and verbal apraxia (making chewing difficult), dysphagia (a swallowing disorder), and growth hormone deficiency (causing poor growth and lack of appetite). How would I feed him? I vowed that I would not let my children's food allergies limit them. I would make their lives as normal as I could. I researched, called manufacturers, and found substitutes. A lifelong baker, I took cake decorating classes to improve my skills. My children are 12, 10, and 8 now (I also have a 14 year old without food allergies). The coconut and soy protein allergies are outgrown. One son passed baked egg and baked dairy challenges and has outgrown some tree nut allergies. The other son remains anaphylactic to airborne dairy proteins and is contact reactive to many allergens. My daughter remains severely allergic to all nuts. All the children suffer from asthma, placing them at higher risk for anaphylaxis. Yet, we do not notice the allergies inside our own home, and we have learned to accommodate the allergies elsewhere. This Christmas, the kids enjoyed 17 varieties of homemade Christmas cookies, all dairy, egg, and nut-free. They have multi-tier buttercream and fondant homemade birthday cakes. We have a number of safe restaurants. We have vacationed at Disneyland, Gatlinburg, Hocking Hills, Chicago, and New York City. All are thriving at school, with strong 504s and one IEP. The kids are active in community musical theater, competition dance teams, karate, basketball, school clubs, and scouting. They go to parties and sleepovers. Many of these take planning, but we have found a supportive community, wonderful teachers, and understanding coaches and directors. At diagnosis in 2010, I never thought such full lives would be possible for them. I am grateful for all the help and assistance I have received, and I am eager to share what I have learned and to help others new to a food allergy diagnosis.
 
The best thing about parenting a child who struggles is...
Watching them rise above challenges. No one ever wants their children to suffer, and membership in the "food allergy club” is not one I would wish on anyone. But I have been amazed at how empathic, responsible, and knowledgeable my children have become. I am proud to watch them self-advocate. I was amazed at how my young toddlers learned so quickly to ask if something was "safe for them." I am awed by their courage in food challenges, when they are asked to eat the very food they have avoided. Personally, the best thing about parenting a child who struggles is when I can reach out to other parents and direct them toward a solution. Every safe product I discover, every baking work-around, every new safe restaurant, becomes a little victory in this war against food allergies, and I love being able to share what I have learned to help others.
 
Do you have any recommended resources such as blogs, websites, or books that we can share?
No Nuts Moms Facebook Forum is 27,000 members strong, and is a great source of information, and they allow questions regarding all food allergies. No Nut Traveler and Dining Out with Food Allergies are also great forums. Memberships in Food Allergy Research & Education (FARE) and Northeast Ohio Food Allergy Network (NEOFAN) are also very helpful.

by Leslie Speer, Ph.D. NCSP, BCBA 
Licensed Psychologist
Program Director, Autism Spectrum Evaluation Team (A.S.E.T)
Cleveland Clinic, Center for Autism

1)    I know this is a scary process.
I know you are scared. I know how worried you are about your child. I know someone said they think your child might have autism and you have thought of little else since then. I know you are now watching everything your child does, analyzing every sound and movement. I know you have dreams for your child. I know you love your child and want nothing more than to get answers and to understand how best to help your child.

2)    I see your child.
When you are in my office, I see your child. I see their smile, the way they communicate with you, their favorite toy. I see how they delight in how the light comes through my window and how they are fascinated by the movement of the wheels on the toy cars. I see their strengths. I also their areas of need. I see how remarkable and unique they are.
 
3)    I see you.
When you are in my office, I see you. I see the scared parent sitting in front of me. I know how important it is to you that I see how extraordinary your child is, that I see all the wonderful things they can do, not just the things they cannot do. I know how important it is to you that I hear your concerns and that I understand your child. I see you, your child’s greatest advocate, their voice.
 
4)    You are not alone.
I am so glad you came to see me. Because you are not alone. We are a team. We are going to work together to understand your child’s strengths and needs. We are going to develop a plan together. You have been feeling so worried and stuck. No more. You are embarking on a journey where you will meet so many incredible providers who will touch your life in ways you cannot imagine. They will celebrate every small step and triumph, as well as listen and cry with you during the hard times.  You are not alone.

5)    You are going to be OK.
I know it does not seem like it right now, but you are going to be OK. You are stronger than you know and you have the greatest motivator in the world, a child. A child who needs you. You are your child’s biggest fan, cheerleader, and advocate. You will find more strength and determination than you ever thought you had. You will find a new normal. A new way of life. One that is full of challenges and uncertainty, but also full of great joy. Joy found in your child’s progress as they begin down their own path, finding their own way in this world with you as their guide.

by Sandi Lehr, M.Ed., BCBA, COBA, New Heights ABA

Play skills do not always come naturally to children diagnosed with special needs. These skills may need to be taught over a period of time. Keys to building play skills include having the right toys and limiting and/or rotating the number of toys available in the environment at any given time.

1. Is the toy an open- or closed-ended toy?

Children who have little to no play skills benefit from closed-ended toys that have a clear beginning and ending such as shape sorters, puzzles, Mr. Potato Head or even books. Closed-ended toys teach children how to complete tasks before moving on to other activities. 

Open-ended toys do not have a clear ending and may include blocks, cars, dolls, play houses or play food. Open-ended play promotes language, creativity, and social engagement.

2. How do I choose the right toy for my child? 

Select toys that are developmentally appropriate for your child and keep it simple for open-ended play activities, especially for young learners. Model open-ended play activities such as feeding fake food to stuffed animals, putting a figure to bed in a play house or having a car knock down blocks. Be vocal in your play by making sounds with the objects you are using. Say “beep beep” during car play, “munch, yum, or mmmm” during play eating and “Zzzzzz” for sleeping.

3. How do I know if I am playing with my child the right way? 

Natural play can even be difficult for adults. Reinforce correct play and shape those play skills along the way. Praise your child for appropriate play by giving them tickles, high-fives, or imitating their action in a dramatic fashion. A child will be more inclined to repeat a behavior if positively reinforced for it. A great resource for toy ideas and play scripts can be found at Paradigm Behavior’s Playroom.

The most important part is to have fun while teaching your child this very important skill!

Anne is the mom of two children from Fairview Park
 
What do you do to relax?
Yoga, reading a good book with a cup of tea, binge watching a series on Netflix, and dinners or nights out with friends. Learning to make time for these things has been so helpful to me.
 
What benefits has Connecting for Kids brought to you and your family?
Connecting for Kids let me know I was not alone. Until I received that call from Sarah Rintamaki, I thought no one could understand or offer any guidance about what I was going through. Professionals had a lot of recommendations and referrals but no one could see it through my eyes the way Connecting for Kids did. It was life changing for our family. I had severe anxiety about going anywhere with my son at that age (he was 2.5 years old when I found CFK.) Up until our involvement with CFK, I avoided playdates, storytimes, etc. But Music Therapy & More and Adapted Storytime were safe spaces where my son could learn and we felt comfortable as a family.  CFK continues to be where I go for support and resources as we continue on our journey. I have also made lasting friendships with families on similar journeys.
 
Which have been your favorite Connecting for Kids resources?
Music Therapy & More has been a positive and accepting learning experience for our family. But the resource I use daily is the CFK Families Facebook group. The Facebook page has given me ideas, helped me find new resources and programs for my son and given me previews of issues we will face as we continue on our journey.
 
If I could go back in time and talk to myself the day we got the diagnosis I would say...
Keep breathing. Keep moving forward and take it a day at a time. Just keep doing the next right thing for your child and your family and follow your gut. You know your child best. Don't question that ever. Lastly, take time for yourself and for your family to just have fun and enjoy each other. 
 
What I worry about most…
I am a worrier. So I worry all the time. As we start the new school year, I worry my son will have a successful transition to kindergarten, make friends, that the other children will be kind and understanding towards him and that he will enjoy going to school. I'm going to call this what I hope most right now instead of what I worry about most right now.

The best thing about parenting a child who struggles is...
We have our challenges, but day to day, I am amazed at the strength, work ethic, bravery, and sweetness that my son has shown since day one. He fought to make it into this world and continues to fight to be an engaged part of it. This particular parenting experience has changed who I am and only for the better. I have become less competitive and judgmental, more resilient, and I have let go of the "expectations" of what I thought our life should look or be like.  I am so proud of both my children and the family that we are.
 
Do you have any recommended resources such as blogs, websites, or books that we can share?
“Option B” by Sheryl Sandburg as I have found the lessons and message very applicable to a journey as a special needs parent helpful and applicable to developing resiliency in all areas of your life. I also love the essay, “A grieving mom's advice to the rest of us: Love purely, and take it easy” by Emily Rapp.

Jessica is the mom of two children from Garfield Heights.
 
What do you do to relax?
Pray, read, dance and spend time with friends.
 
What else would you like to tell us about yourself?
We moved to Cleveland in 2015 from Dallas.
 
What benefits has Connecting for Kids brought to you and your family?
Behavior management, autism resources, play techniques and valuable friendships.
 
Which have been your favorite Connecting for Kids resources?
Teach Me to Play and the Coffee and Chat about marriage.
 
If I could go back in time and talk to myself the day we got the diagnosis I would say...
it is important to trust yourself. There is no harm in seeking out perspective on your child. The diagnosis confirmed my initial suspicion. I had suspected something different about our daughter for at least one year. She did not like to play, repeated phrases, had a photographic memory, would have intense meltdowns, needed routines and did not make eye contact. Most people were sure it was normal behavior but I had a hunch. I am grateful that I trusted myself to pursue questions with doctors, teachers, and professionals. The diagnosis is scary but opens the door to help and have a better understanding of my child.
 
What I worry about most…
My daughter’s future for long term growth and success on the spectrum. Will she date or marry? Will she be independent or have to have an aide? Will she understand danger in each stage of life? Will she be bullied? Will her speech improve?
 
The best thing about parenting a child who struggles is...
I am part of an incredible network of parents and have so many resources for Autism spectrum support. I am not the only one in this struggle and relieved to have others I can turn to who are in similar situations and understand.
 
Do you have any recommended resources such as blogs, websites, or books that we can share?
Finding Coopers Voice
Key Ministry
Color of Autism
 
Is there anything else about your journey that you would like to share with other parents?
Every day, I am learning something interesting and new. The journey continues every second, minute, hour, day by day.

With summer break just around the corner, many families are looking for ways to keep their children reading and avoid the summer slide. While there are a number of paid tutoring options and camps, you just can’t beat free summer reading programs from your local library.

What is a Library Summer Reading Program?

Library summer reading programs typically seek to incentivize children for reading. At the beginning of the program, children are given a reading log where they are encouraged to track reading (either by recording minutes read or book titles). Once certain goals are reached (for example, 100 minutes read), children can return to the library to earn a prize (stickers, pencils, an entry for a raffle, etc.).

Most of our library partners offer summer reading programs for elementary-aged children and many offer programs for teens and adults too so that you can get the whole family reading!

What if My Child is a Struggling Reader?

Signing up for a summer reading program can be daunting if your child struggles with reading. However, most librarians will agree that summer reading is all about getting your child into books – not whether they can become an avid reader in just three months. If you are in doubt about the targets, talk to your children’s librarian and see if there are ways you can modify the targets for your child. For example, our librarian helped us find high-interest, low readability (hi-lo) titles that my daughter would enjoy. She also suggested that we take turns reading every other page to avoid fatigue. Just remember – your librarian wants your child to be successful and he or she is there to help!

Where Can I Find a Program?

Libraries throughout Northeast Ohio are offering summer reading programs. You can sign up for one or more (depending on what motivates your child). The following libraries are also Connecting for Kids partners (who offer adapted storytimes). We encourage you to check them out!

Avon Lake Public Library (website)
Libraries Rock! Summer Reading Program (kicks off June 1)

Akron-Summit County Public Library (website)
Mind Body & Sole Summer Reading Program (kicks off June 4)

Cuyahoga County Public Library (website)
Libraries Rock! Summer Reading Program (kicks off June 2)

Elyria Public Library System (website)
Libraries Rock! Summer Reading Program (kicks off June 2)

Lakewood Public Library (website)
Libraries Rock! Summer Reading Program (see page 46) (kicks off May 14)

Rocky River Public Library (website)
Libraries Rock! Summer Reading Program (kicks off June 11)

Westlake Porter Public Library (website)
Libraries Rock! Summer Reading Program (kicks off May 31)

Even More Opportunities!

If your child really loves books, Barnes & Noble Bookseller also offers a summer reading program where children can earn a free book. Details can be found on their website.

By Karla Fitch

Three summers ago, we dragged on through a seemingly endless summer vacation of tantrums, meltdowns and frustrated shouts of “I don’t KNOW what to do!” Even now, at 10 years old, my daughter’s lagging development in executive function can make unstructured time a challenge – which is why we use a technique that I call “collaborative scheduling.”

A collaborative schedule is exactly what it sounds like. My daughter and I collaborate to get important things done and then fill the rest of our days with our favorite activities. And while it may sound too good to be true, it works. In this article, I’ll introduce you to collaborative scheduling – including some basics you need to have in place to make it work and share some tips to get started. 

Taking Turns, “Must Do’s” and Visual Schedules

Before you can start making up your first collaborative schedule, there are a few basics that you may have to square away. These are:
•    Taking Turns
•    Must Do’s (and Want to Do’s)
•    Visual Schedules

Many children (both with and without disabilities) struggle with turn taking. In our case (as with many others) this was a skill that had to be taught. To teach my daughter turn taking, we presented opportunities (for example, using board games) and gave her lots of praise when she got it right. Timers, modeling and social stories can also be great tools to help children get it right.

Another big factor in collaborative scheduling are “must do’s” and “want to do’s.” After all, we’d ALL love to spend the day at the beach – but laundry, groceries and work still have to be done. To teach must do’s and want to do’s, we used card sorting activities. We printed up cards showing both types of activities and sorted them into piles. As we learned, we shuffled ideas in and out of the card deck until my daughter could categorize them all herself. You can see some samples of the cards we used here.

Finally, you’ll need to have some familiarity with visual schedules and what works for your child. Some children may already be using visual schedules at school, so don’t be afraid to ask your child’s teacher for advice. You can also look online (Google “visual schedule” for ideas). Just remember that the schedule you choose has to work for you and your child. When in doubt – keep it simple!

Making Your First Collaborative Schedule

We begin each day the same. I take out a sheet of scrap paper and my daughter and I list all of our must do’s (examples might include, “go to the grocery store,” “visit grandma and grandpa,” and my personal favorite, “10 minutes of quiet time”). After we’ve made a list of must do’s, we start naming our want to do’s (for example, “go to the pool” or “make a craft”) and make a separate list of those.

I flip the paper over and draw three lines (breakfast, lunch and dinner) and then we start to fill in our must do’s. We talk about our choices as we go. For example, I might say “going to the grocery store is a must do before lunch because we have no bread for sandwiches.” I let my daughter ask questions and add her input too, like “mom, all the must do’s are in the morning! Can’t we do something fun?”

Once our must do’s are on the schedule, we take turns filling in our want to do’s until we have a full day. We’ve learned that not every want to do gets on the schedule for the day, but there’s always room for it on the next day. This kind of give and take also helps to model priorities for my daughter. For example, I can say, “we didn’t get to do a craft yesterday and I know that was important to you. Let’s give that want to do a higher priority on our schedule tomorrow so that we have time for it.”

Last Words

Your collaborative schedule won’t happen overnight. It’s a learning experience that will take time and a little patience to perfect. But after three summers of collaborative scheduling, I can tell you that our summers are filled with a lot fewer tantrums and a lot more good memories.

If you’d like to learn more details about the different pieces of our collaborative schedule process, you can visit the website we created to share our story at collaborativeschedule.com Good luck this summer and happy scheduling!

Monica is the mom of two children from Avon.

What do you do to relax?
I love to bake, volunteer within my community, and spend time with my family.

What else would you like to tell us about yourself?
I work part-time for the City of Avon as the Mayor's Court Clerk and I am currently pursuing my degree in Public Administration. I also work PRN for Fairview Hospital in the Pediatric Emergency Department. I love working with kids!

What benefits has Connecting for Kids brought to you and your family?
It has connected me to a whole network of parents and caregivers who understand the stresses and struggles of raising a child with special needs. It has made me more aware of resources for my child and keeps me updated on ever changing information related to autism spectrum disorder.

Which have been one of your favorite resources?
Some of my favorite resources offered by CFK are the Coffee and Chat, Meet and Greets, and the variety of Speaker Series offered. My husband and I were lucky enough to see Temple Grandin speak at Playhouse Square and have sign and dedicate one of her books to our son Evan.

What I worry about most…
I worry most about the future and what resources will be available when our son ages out of school-based services. We struggle with not knowing what lies ahead but remind ourselves often that we can only take it day by day.

How parenting a child who struggles has changed my ideas on parenting...
Nobody hands you a manual after diagnosis and says, "hear is everything you need to know about parenting your special needs child". Parenting is altered to fit the needs of the child. Once our son was diagnosed, I wanted to know EVERYTHING about Autism. I knew right away that we had to be his advocates and his voice. In order to move forward and be the best advocate, you have to change the way you think. "How can I educate myself on my child's diagnosis?" and “How can I get the maximum resources for my child to have the best quality of life?” Set small goals for your child and celebrate all of the accomplishments and milestones. Your whole way of thinking has to change as a parent. Instead of saying, "If my child does this", try saying, "WHEN my child does this".

The best thing about parenting a child who struggles is...
Through our journey, our son has taught us patience, compassion, and to never take the little things for granted. Even though there are many struggles, he has made us strive to become a better person. Evan makes an impact on everyone he meets, especially with other peers, caregivers, teachers, and therapists. Everyone we have crossed paths with hold a special place in our hearts. It's rewarding to stay connected with these people and to remind them how much their presence impacted such positive change in our son's life.

Do you have any recommended resources that we can share?
The CFK website is the ultimate “go to” guide for parents at any stage in their journey. They offer a little bit of everything and are excellent at keeping the resources up to date. The grant and scholarship tab has been very helpful to our family and offers opportunities for coverage on therapies that may not be covered by insurance.

Is there anything else about your journey that you would like to share with other parents?
I'm grateful to be a part of the CFK community and hope to spread the word to other parents who struggle. The best thing we have done as parents is reach out and ask for help. Connecting with other families has given us hope for the future.