Lisa is from North Royalton and has a son.

What do you do to relax?

We listen to music or try to get his mind off what he is frustrated with. We also go swimming and take walks outside, sometimes in the Metroparks, to unwind and relax. Nature always has a way of helping us both to open our eyes, breathe and take it all in looking at God's beauty.

What else would you like to tell us about yourself?

We are glad there is a community such as Connecting for Kids that we can feel a part of and share our concerns as well as our victories with our little blessings from above.

What benefits has Connecting for Kids brought to you and your family?

The Music Therapy & More class has benefited my son because it has given us a way to bond through music.

Which have been your favorite Connecting for Kids resources?

I like the podcasts, the music therapy classes and the Speaker Series.

My greatest lesson learned was...

Even though my child may struggle a bit more than other kids, he is so special and teaches me so much more about being a parent and about life. For that I am grateful.

The area where I have grown the most...

Learning how to connect with my son.

The hardest thing for me to learn was...

All kids have challenges and we need to put ourselves in their shoes at times. I know my son has come a long way and I am super proud of him, he is the light of my life and I am so blessed to be able to be his mom.

Do you have any recommended resources such as blogs, websites, or books that we can share?

Raised Good blog and my son and I love to sing Twinkle, Twinkle Little Star and "You are My Sunshine" together.

by Michelle K. McGuire, Esq., Special Education Lawyer, McGuire Law and Advocacy LLC

Learning to navigate your child’s Individualized Educational Plan (IEP) can be overwhelming. Being aware of a few tips can ease the stress as you prepare for an IEP meeting.

1. Ask for a draft IEP to review before the meeting.
Review the IEP with your child’s educational evaluations. These evaluations are the key to your child’s educational needs; these needs are what the IEP goals should be addressing and teaching your child.

2. The IEP goals must be meaningful and measurable for your child.
One way to determine if a goal is meaningful and measurable is to compare the goal with the present level of performance (PLOP). The PLOP must tell you where your child is performing on the goal’s particular skill at the time the IEP goal is being written. This ensures that your child is achieving measurable progress that is meaningful.

3. Each goal must have a corresponding service/instruction delivered by a qualified professional.

4. Bring someone who will support you at the IEP meeting. 
Someone who will help you stay calm, take notes and ask questions. Contact a lawyer if you feel that you and your support person can no longer handle the meetings alone or if you need more information about your rights.

5. Don’t sign the IEP at the meeting. 
You have the right to take the finalized IEP home to review and ultimately determine whether you agree or disagree with the entire IEP. The IEP is a legally binding contract between you and the district. Be thoughtful and take your time, your child’s future is at stake.

Mary Lynn is from Amherst and has six children.

What do you do to relax?

I love to visit the lake or be near water, which brings me great peace. My prayer time is essential and has gotten me through so many struggles. I love to dance, any time of the day and anywhere for dancing comes from my soul! I enjoy gardening, camping and playing sports, especially soccer, swimming, biking & hiking-pretty much anything outdoors is relaxing. Any chance I can get you can find me reading. People will mention various TV shows to me and I usually do not know what they are referring to because I just don’t have time to sit down and watch TV. My mom is my best friend so any amount of time I get to spend with her, even if it’s just sitting next to her, brings my heart great joy. We can laugh at just about anything! Lastly, I attend a retreat for moms of children with special needs that has essentially saved my life and renewed my spirit.

What else would you like to tell us about yourself?

I have a Master of Science in Education degree, with a concentration in Education Administration from Ashland University, and my undergraduate work was in Psychology from Ohio University. I work full time for the Ohio Board of Developmental Disabilities at a Day Program for individuals with intellectual/developmental delays. I love that I still cherish my job even after working there for almost 24 years. My children are my everything and I love one-on-one-time with them which is super special. Once in a blue moon I have gone on a date with my husband and that is beyond essential because raising our son with autism has put such a strain on our marriage at times.

What benefits has Connecting for Kids brought to you and your family?

Sarah Rintamaki came to me at a time that I thought I was going to lose my mind. I was connected to her through a support group for moms of children with special needs in which she was the guest speaker. Her story and support have been priceless to me, such a God-send. She does not know that her reaching out to me has been such a blessing in my life.

Which have been your favorite Connecting for Kids resources?

The Coffee and Chat support group where I brought my younger children to discuss their feelings about having a special needs sibling. The e-mails that keep me connected and informed are so valuable as well. I may not always be able to attend as many sessions as I would like but I like being informed and feeling included. The one thing that I would wish for is to have more CFK programs located on the west side of Lorain County because I would be able to attend more often.

What I worry about most…

I worry about the safety of my son due to his disability. My son appears very normal in the way that he looks, which is a grave disservice because then people expect his behavior to match his appearance, which can be very disheartening. I worry that other people may not understand him and could strike out at him for behaviors that are beyond his control. I also worry about his future such as will his behaviors worsen as he gets older and will he get into trouble for them? Will he be productive when he grows up? Will he ever be able to live on his own with supports in place? My natural instincts as his mother leave me feeling that there is no one who will be as concerned about him and love him the way that his family does.

When my child's behavior gets out of control...

I feel out of control at times too. I get aggravated because he is so set in his ways and is unpredictable in his likes on a daily basis. If he doesn't like the feel, taste, or sound of something he just won't do it. Take for example; getting dressed, eating, taking his medicine, and going to bed at night (his wants/agreement to anything is situational). He gets overstimulated at holiday parties or any event where there is a lot of people and/or noise. I have often thought how different life would be if he were an only child. I can’t help but think what a better parent I could be. Unfortunately, I have to meet the needs of his five other siblings who I adore but also vie for my attention. I believe that because I am worn so thin sometimes that it is so much harder for me to handle his idiosyncrasies. I love him with my whole heart but I do lose my patience when he is so stubborn, demanding and rigid in his ways.

I get embarrassed when...

My son acts out due to his anxiety. We will be in public and one minute he is fine and the next minute he can be hitting his siblings or swearing. He has a hard time calming down once he is overwhelmed and his behaviors will just escalate. I get frustrated and hurt because some of his own family members do not understand him nor do they know how to positively respond to him. It usually becomes a power-struggle because they do not understand that he gets over stimulated and acts out his anxiety. I especially feel hurt when other people act judgmental of him. We do not attend many social events and barely socialize with the neighbors due to my son's maladaptive behaviors. Lastly, it is incredibly embarrassing when we are in public and he is swearing and having a meltdown, such as my younger son's soccer or football games. I so desperately want to watch their games but can't when my son is acting out.

Do you have any recommended resources such as blogs, websites, or books that we can share?

I have found some solace in an online sensory processing group that has given me insight and support for my son who is autistic, Stages and Ages for Families Raising Individuals with Special Needs and Finding Cooper’s Voice have been so therapeutic for me to read online. Also, in addition to support from Connecting for Kids, Autism Speaks is a good support system as well.

Is there anything else about your journey that you would like to share with other parents?

Sometimes I feel so alone in my journey with my son. I know that there are plenty of parents out there who struggle with their children with similar and/or different concerns, yet it doesn't help the alone feeling, especially when I think that most families in the world do not have the daily struggles and do not face the embarrassment that my son causes when in public. It is difficult just to walk out the door each day because everything has to be planned around our son’s need for structure and desensitization to his sensory surroundings. Therefore, if my story sounds like it could be your story, just know that you are not alone and if you reach out to others who share your journey you may find great comfort too.

Julie K. Robie, Esq., Deputy Director, Community Fund Management Foundation

Every year, Community Fund Management Foundation (CFMF) receives grant applications from parent and guardians who wish to purchase disability-related items or services for a child with special needs. Successful grant applications tend to have several features in common.

First, successful applications answer every question on the application form. Every blank is filled in, and all required supporting documentation is attached. This may include income information, proof of disability, or vendor invoices or receipts. There are usually limits on who is eligible to submit an application and how grant checks will be made payable, so it is important to follow all instructions carefully. Applications that are incomplete may be denied, even if funding is requested for a worthy purpose.

Second, successful applications clearly describe the item or service to be funded, and they make a compelling case as to why the child needs that item or service in relation to his/her disability. They fully explain how the grant would be used and how the child would benefit. Furthermore, the type of request must match the mission and purpose of the grant program.

Third, successful applications demonstrate financial need. The applicant must show that he/she lacks alternative resources to pay for the item or service. In addition, if the item or service costs substantially more than the grant amount, the applicant must explain how the balance of funds will be obtained. This shows the grant-making organization that if funds are awarded, they can be fully utilized for their intended purpose.

Applications that meet these parameters should receive full consideration and will stand the best chance of being approved.

If you are interested in learning more, Julie K. Robie, Esq. will be speaking at the upcoming CFK Speaker Series on February 23 entitled, How to Apply for Grants for children with Special Needs. Click here for more information or to register.

Catherine is from Valley City and has three children.

What do you do to relax?

I love to read.

What benefits has Connecting for Kids brought to you and your family?

Tools and resources that I never would have found on my own.

Which have been your favorite Connecting for Kids resources?

The Facebook group, because I can always count on this community to listen and understand.

The area where I have grown the most...

Is not judging other children and parents. I used to think, "If you would just be firm with your child, they will do what they're told." I feel so naive looking back at that. I see other parents, children, and even independent adults, struggling, and I really try to tell myself, "You don't know what they are going through. You don't know the whole story. Maybe they have autism, or maybe they have a situation in their life that is out of control, and this is how they're dealing with it." You just don't know.

The hardest thing for me to learn was...

I can't discipline my child with autism the same way I disciplined my older two, and it made me change how I treated them too. I was a firm believer in corporal punishment if time outs and directives didn't work. The older my child with autism got, I realized this was completely not working and never will. I still get frustrated and angry. Sometimes it takes all I have to leave and go to another room till I can calm down. I need to accept that my child cannot always control the behavior displayed. I am learning that positive words and positive reinforcement works so much better for all of my children. Because of being so literal, when my child with autism was spanked, she then thought spanking was OK to use on friends, siblings, parents, and anyone. It really took a long time for me to learn that perspective. I am still learning this lesson and it is not easy to learn at all.

The worst thing about parenting a child who struggles is...

I really feel because she my daughter is beautiful and looks typical, that she is unfairly judged, even when they know her diagnosis! At our previous school, it seemed like all rough housing by boys was dismissed. When girls got rough, they were instantly reprimanded, and got a consequence. I know when we are at stores, or church, I really feel judged when behavior is out of control, because there is no evidence to the contrary that she is not typical.

Do you have any recommended resources such as blogs, websites, or books that we can share?

I always recommend Connecting for Kids! I also want to recommend STEPS Academy and its Willow Farms and Broadview Heights branches. I had my daughter at Willow Farms last year and she really blossomed there. She wanted to return to mainstream school this year, and she is doing so well, she is like a new child.

by ChrisTina L. Reed

The Cleveland Clinic Transgender Medicine and Surgery Program

Learning your child is struggling with gender identification can be overwhelming, possibly leaving you wondering what to do next but there are resources available to help navigate this complex challenge.

1. Understanding the Scope of the Issue

It is critical that your child feels supported and accepted at home.  According to a recent article posted on suicide prevention website www.thetrevorproject.org, suicide is the 2nd leading cause of death among young people ages 10 to 24. In a national study, 40% of transgender adults reported having made a suicide attempt and 92% of these individuals reported having attempted suicide before the age of 25.

2.  Finding Professional Support

It is essential to find a competent, affirming mental health provider familiar with WPATH (World Professional Association of Transgender Health) guidelines to support your child and family. Continuous discussion of one another’s challenges and goals will help assure the best possible outcome and soften the potential challenges and disappointments along the way. 

3. Make Connections
Familiarizing yourself and loved ones with terminology (such as preferred pronouns, acronyms often used, etc.); gathering resources and making connections in the community may help you feel empowered and more comfortable with situations that may arise.  Knowing you are not alone is often helpful and community support is available; a great place to start might be your local LGBT Community Center as they may offer support groups tailored to your situation. 

4. Respectful Communication
Your child might request using their preferred name and/or pronouns or change their physical appearance by wearing different clothing and hair styles; it is important that caregivers and role models offer messages of support so the child feels they always have a safe space to go during times of struggle.  Disagreements between parents regarding intervention and even smaller changes such as preferred names and pronouns can often arise and should be handled with respect and care, a family counselor may have the best conflict intervention techniques to help make these important decisions a bit easier to make together.

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.