Yassed has one child and lives in Elyria.

What do you do to relax?

Watch TV

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

Navigating resources such as adapted programs and sports.

Which have been your favorite Connecting for Kids resources?

Help finding a summer camp for my son.

My greatest lesson learned was...

How I see life now is different. My child teaches me a great lesson since every day is a challenge for him that he manages to overcome.

I get embarrassed when...

Other parents do not teach their children that there are people with different health conditions

The most difficult part of parenting a child who struggles...

I can't provide all of my time to him because I need to work full time. He needs a person all of the time for living needs and therapies.

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

It has been very difficult to get ahead as a single mother since there are not many places that offer help to the caregiver so they can go to work.

Karen has one child and lives in Cleveland.

What do you do to relax?

Attend concerts and listen to music.

Anything you'd like families to know about you??

You are not alone! Lots of other parents and resources are available.

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

One-on-one support and feeling connected to others.

Which have been your favorite Connecting for Kids resources?

Share & Support groups

The area where I have grown the most...

Is in trusting my gut. If I don't feel heard or understood I've learned it's OK to change providers. I've also found lots of resources and am learning where to go for help if it's needed!

If I could go back in time and talk to myself the day we got the diagnosis I would say...

Take time to process things. Great job fighting for answers but it's OK to not have everything figured out in a day.

The most difficult part of parenting a child who struggles...

Hearing "she's fine, she'll catch up" and knowing that those people mean well but truly don't understand the journey. Also finding and getting services for your child, it often feels like a full-time job making calls and getting appointments.

Hillary has two children and lives in Strongsville

What do you do to relax?

My favorite relaxing activities are reading books and journaling.

What else would you like to tell us about yourself?

I volunteer for a hospice program. I do companionship visits for patients several times a month. It’s so rewarding and I’ve met some incredible people along the way.

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

I have one typically developing child and one child with a diagnosis. I love that I can bring both of my children to CFK events. We always feel welcomed and accepted.

Which have been your favorite programs?

I love the adapted story times at the library! It warms my heart to see other families like us having fun and enjoying each other’s company.

If I could go back in time and talk to myself the day we got the diagnosis I would say...

When you get a diagnosis, there is so much pressure to sign up for all the tests and therapies right away. If I could go back in time and talk to myself the day we got the diagnosis, I would say give yourself time to process the diagnosis. Give yourself permission to feel sadness, relief, fear, and whatever else is in your heart. Our daughter’s doctor suggested that we make plans six months at a time. This was great advice. Maybe this means you want to make sure your child begins speech therapy or receives a hearing test right away, but genetic testing can wait. Resist the urge to sign up for everything and make all the appointments right away. It will give you time to take stock of what’s working and what’s not, and will keep you and your child from feeling too overwhelmed.

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

The best thing about parenting a child who struggles is that the milestones and victories are so much sweeter. Other families may take for granted the fact that their child will speak, be potty trained, or sleep in a regular bed. Parenting a neurodivergent child means that a lot of timelines for these milestones go out the window. I’ve learned to be so much more relaxed and accepting of my daughter’s needs and abilities. As a result, every time she uses her PECS to ask for something she wants, or waves and smiles at a family member, or learns a new color, I am so much more proud and joyful than I would have been if these things came easily to her. Neurodivergent families walk a hard road sometimes, but it can be a fun and rewarding one too!

The most difficult part of parenting a child who struggles...

Seeing typically developing children my daughter’s age can hurt sometimes. It’s easy to focus on the things that my child can’t do, rather than the things she can. The most helpful thing for me is going to social events and places where I can interact with other parents who have similar struggles. Talking to a therapist and journaling have done wonders to help me process and accept my feelings.

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

The book, The Out-of-Sync Child by Carol Stock Kranowitz; recognizing and coping with sensory processing disorder.

Ruth has two children and two grandchildren and lives in Westlake.

What do you do to relax?

Walk, exercise, pray, spend time with family and friends.

What else would you like to tell us about yourself?

I am retired now but spent my whole career as a special educator in public and parochial schools in the area.

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

Resources, communication, community, professional and respectful assistance when needed.

Which have been your favorite Connecting for Kids resources?

The programming offered in the community.

My greatest lesson learned was...

There’s many who struggle. Together there are many answers and resources to be shared which can help.

The best way I asked for support was...

Sharing my story.

The hardest thing for me to learn was...

Now my grandchildren are facing possible roadblocks or challenging issues.

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

Hope for Hurting Parents, local MOPS groups, and working with churches/spiritual communities to help you.

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

Continue to listen and follow up with the people in your life. They need compassion and empathy.

Arianna has two children and lives in North Olmsted.

What do you do to relax?

Listen to music, clean (mess makes me anxious), read, go for a walk, and be out in nature.

What else would you like to tell us about yourself?

I am a teacher for a local school district and grew up dancing, figure skating, and doing theater.

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

Connecting us with activities that we otherwise would not have been aware of.

What is your favorite thing about Connecting for Kids?

It is helpful to know that you aren't alone and that there are resources and groups you can utilize in the community.

The area where I have grown the most...

Honestly, I think the area where I have grown the most is letting go of a little bit of control and being okay with that. I am pretty Type A and like to be able to manage things as much as possible. However, you just can't do that when you have a kiddo who struggles. You can arrange for therapy and find resources to help you, but it's largely out of your control. We just walk the path and take things one thing at a time. Her path looks different than the paths of other kids, and that's okay. It's a pretty beautiful path!

If I could go back in time and talk to myself the day we got the diagnosis I would say...

For days after my daughter's diagnosis, I had pangs of fear and dread. Her condition is SETD5-related disorder and was only discovered recently, so while we finally had an answer as to why she struggled in so many areas, we really didn't have any answers or direction at all because very little is known about her condition and its future implications for her life. What I would tell myself on diagnosis day if I could go back is simply this: You are the best possible advocate for your child. You two and your family will walk this road together and tackle everything that needs to be tackled, just as we had already been doing for her whole life so far. Just keep being her biggest advocate and her loudest voice.

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

I feel that her struggles make her even more unique. We had a miscarriage before her, so she is our rainbow baby. We believe that she is here, just the way she is, for a reason. It makes the milestones and the achievements even more special because we have seen her put in the work and overcome obstacles to get to those achievements.

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

I like the Raising Rare podcast!

Laura has two children and lives in Avon Lake

What do you do to relax?

Write, read, run and listen to music

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

I have only recently interacted with Connecting for Kids for the first time, but the immediate and potential benefits are already tremendous. Caring for a medically complex child has often led to a sense of isolation, and the opportunity to interact with other families and professionals who might understand the needs of a child and family with special needs is immense. It means socialization and learning opportunities and a chance for both my younger medically complex child and older child to interact with others in a supportive and accepting environment.

Which have been your favorite Connecting for Kids resources?

I have only had the opportunity to participate in one event thus far, but the most immediate and profound benefit has been the opportunity to interact one-on-one with people able to understand my son and offer ways to improve upon his own development while also offering ways for my older son and myself to socialize and form valuable connections.

The best thing about parenting a child who struggles…

The absolutely amazing thing about watching a child who has struggled for his very life many times is seeing his precious innocent joy in life. He has survived four open heart surgeries, strokes, and seizures (amongst other medical complications), and he has surmounted so many challenges in his scant few years of life, and yet that brilliant glint of joy in his eyes and happy waving of his arms and loud energetic yell when he accomplishes some very simple but amazing task is breathtaking. In caring for this child, I have learned to appreciate the value in what others might take for granted.

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

The most difficult part in caring for a child with numerous medical challenges who also struggles with developmental and emotional/social delays, including autism, is making the decision on what is necessary. So many surgeries, procedures, therapies and medications mean a constant need to consider what will provide my child with the best quality of life. The best quality might sometimes mean stepping back from aggressively pursuing a certain course of action. As a critical care nurse, I constantly doubt my decisions regarding my son, and judge myself harshly whenever his health declines, regardless of the cause.

The hardest thing for me to learn was...

The hardest thing for me to learn in caring for my younger son was to let go. His numerous medical challenges have necessitated many surgeries and hospitalizations, and his care has, from the beginning, been termed palliative. I had to learn to value every single moment because there was no guarantee for how many moments we might have together.

Do you have any recommended resources?

Mended Little Hearts 

A Kid Again 

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

The journey to this point in time has been, and will continue to be, challenging. I look forward to the ability to interact with others who might understand some of these challenges.

Maggie has two children and lives in Akron.

What do you do to relax?

Read or craft/color, or get out into the woods for a hike

What else would you like to tell us about yourself?

I am neurodiverse as well. I am a Community Health Worker, dedicated to pursing health equity within my community

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

We have not utilized many programs yet as we are new.

Which have been your favorite Connecting for Kids resources?

Community

If I could go back in time and talk to myself the day we got the diagnosis I would say...

It’s going to be ok. You are an excellent advocate for your son, and you are going to build him a dream team that will help him go farther than you currently dare to imagine.

When my child's behavior gets out of control, I feel...

That I have lost control of the situation. I feel like nothing I do will help. It’s a scary feeling

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

The shift in perspective. You are forced to reevaluate and rethink things, and gain new insights.

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

Kids Eat In Color 

Big Little Feelings

Thomas has two children and lives in Lakewood.

What do you do to relax?

Paint and work on video games based on my child's art.

What else would you like to tell us about yourself?

I'm originally from NYC, moved to OH when I met my (to be) wife.

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

Just the knowledge that there are others out there with the same experiences and that people like CFK want to help!

Which have been your favorite Connecting for Kids resources?

The emails have been a huge trove of information!

What I worry about most…

What will happen to my child after I'm gone.

The hardest thing for me to learn was...

My child isn't just his disability- there is a vibrant, smart kid who wants to be treated like every other kid.

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

We've learned that every child has something to contribute, which is why when my child showed an interest in art, I started using his drawings as characters in my games.

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

I really enjoy Tamara Hull's blog. 

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

I am so grateful that organizations like CFK exist!

Screenshot of Thomas' video game using his child's art.

Shannon has five children (3 bio and 2 foster) and lives in Oberlin.

What do you do to relax?

Play games on my phone, play with my children, watch TV, burn incense/candles or sit outside/go to the park.

What else would you like to tell us about yourself?

I have been a foster home for over 5 years and I am currently enrolled at LCCC.

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

I have been able to find programs with information that meets my growing family’s needs.

Which have been your favorite Connecting for Kids resources?

The Grab ‘n Go information packets available at the Resource Fairs.

My greatest lesson learned was...

Patience, patience and more patience. Also, be careful whom you trust.

The bad habit I picked up...

During the pandemic, I also had another child of my own. I now struggle with maintaining a true routine within my own home of everyone going to bed on time, having things done by a certain time, etc. The sense of urgency is no longer a thing here since for months we didn’t have to worry about having any timeframe or places to go. As of now, we’re getting much better!

When my child's behavior gets out of control, I feel...

Overstimulated. What I remind myself is their behavior is not a personal reflection of my parenting. I need to take a step back to gather my thoughts and then approach the child differently to try to help them through their difficult or often heavy emotions. Reassuring them that their feelings are validated but let’s communicate them more openly.

Chelsea has two children and lives in Twinsburg.

What do you do to relax?

Craft, garden

What else would you like to tell us about yourself?

I am having a really hard time. Parenting a spicy neurodivergent kid is a hard life. I love my kids so much but his behavior has isolated me and I just want us both to enjoy life.

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

Connecting for kids has provided a non-biased community of people who are not only like-minded, but share similar experiences in either the same stages or previous stages of life. The resources that this group provides both personally and professionally have been amazing thus far.

Which have been your favorite Connecting for Kids resources?

I really enjoyed the Share & Support adult support group sessions, where we could just share our experiences and bounce off of one another as to what’s going on in our lives, and how we can help one another

What I worry about most…

That my son won’t learn to self-regulate his emotions and struggle his whole life.

When my child's behavior gets out of control, I feel...

Like an absolute failure. Although I know in my heart that I’m doing the very best I can for the both of us it’s still so defeating when these uncontrollable meltdowns happen.

The most difficult part of parenting a child who struggles...

Having to explain to others. It hurts me and my soul having to explain or justify his behaviors to others when I know that he truly is a sweet boy and he’s just trying so hard to figure himself out.

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

No I look to Connecting for Kids for all the answers ❤