MaryJo lives in Fairview Park and has 3 children.

What do you do to relax?

Read

What else would you like to tell us about yourself?

I struggle with depression, anxiety and ADHD.

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

CFK has offers support through its Coffee and Chat programs which brings together families who have children with similar diagnosis.

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

You will make it. It’s going to be hard, it will seem unfair, but we can do hard things.

The best way I asked for support was...

Registering for Coffee and Chat support groups and reaching out for respite care.

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

Trying to navigate the world in an effective way for my child. Looking at a scenario or certain atmosphere and asking, “How will my child respond to that?”

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

I blog about significant events but also find support in Finding Coopers Voice and other similar blogs.

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

We have struggled through severe behaviors and a hospitalization. It may feel like you’re in the trenches and like you’re being dragged through mud at times but it’s not always going to be that way, asking for help and accepting it is key to survival through this season of life.

Jill has one child and lives in Elyria.

How are you and your family dealing with the COVID-19 pandemic?

My husband works from home now and we don't go out nearly as much as we used to. We spend a lot of family time watching movies at home.

What do you do to relax?

Watch terrible reality TV shows.

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

We have met other families with challenges like ours through CFK.

Which have been your favorite Connecting for Kids resources?

The CFK Complex Needs Facebook group.

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

It's all going to be alright. Your child will do her very best because YOU will do your best.

What I worry about most…

When my daughter will no longer be here. Her life expectancy isn't long and the thought of being without her takes my breath away.

The hardest thing for me to learn was...

To have patience. I still struggle with this. I have to be the nurse, the driver, the therapist, the research team, etc. All while waiting on others to do their job, especially the insurance companies!

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

Check out A very SPECIAL NEEDS Christmas on Facebook. It is filled with amazing ideas.

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

We always remind ourselves to "Just keep swimming.”

Meghan has two children and lives in Parma.

How are you and your family dealing with the COVID-19 pandemic?

It’s been hard but it has brought us closer as a family. Staying in more often and playing board games, and watching movies.

What do you do to relax?

Yoga, take time for myself.

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

Every year I have found many awesome resources at the Connecting for Kids Meet and Greet. I have met amazing people including a woman whose ministry is hosting free retreats for moms who have kids with disabilities (Shepherd’s Well). Connecting for Kids always provides such helpful resources and they don’t leave anyone out. The organization has information on so many topics.

Which have been your favorite Connecting for Kids resources?

Coffee and Chat programs. It’s been great to give and receive support from other parents that struggle with some of the same things we do. I’ve enjoyed meeting new people that I would have never met if I didn’t have my child.

What I worry about most…

What my daughter will do when we are gone.

The area where I have grown the most...

Patience and learning that it is okay to struggle. Leaving the idea of what I thought was perfect behind,

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

Through my child, we have encountered amazing therapists that have worked with her. It’s also given us the opportunity to teach her sibling that it is okay to be different. For me, it’s helped me to focus on the positives and has taught me how to break out of my shell. It’s been awesome watching her hit each milestone and being proud of how much she has overcome. We have watched her grow as a person, knowing she can overcome anything.

Dina has 3 children and lives in Avon Lake.

How are you and your family dealing with the COVID-19 pandemic?

The pandemic has impacted us significantly and added even more stress in addition to our family moving to a new country. There were months of living separately and this is not over yet as my husband is still abroad. Given this, I have no other choice than managing all by myself and making sure everybody stays healthy. We love sports and this helps a lot. We also have became much more flexible, open to new things, new connections, etc. We love traveling and explored several states during the last couple of years. I am very thankful to people who supported me through this difficult time, and there were so many. Our school does an amazing job supporting the kids and they had a great time in the summer camp for kids with disabilities, Finally, most of the changes of the last couple of years proved to be positive.

What do you do to relax?

Sports

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

Connecting for Kids has provided information about resources I can tap into for my kids.

Which have been your favorite Connecting for Kids resources?

Music Therapy & More

My greatest lesson learned is...

To be patient and work in small steps. It may take months and years for goals to be achieved.

What I worry about most…

My son with autism’s lack of self-regulation and self-control. He is behind in certain academic skills too. He gets very frustrated that he cannot achieve the same goals as his peers and this gap becomes more and more visible. I worry that I cannot help him to deal with this frustration.

The hardest thing for me to learn was...

Not to compare his achievements to other kids.

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

The books Sensory Integration and the Child by A. Jean Ayres and Engaging Autism by Stanley I. Greenspan.

Tatyana has 2 children and lives in Bay Village.

How are you and your family dealing with the COVID-19 pandemic? 

Our family has been taking it day by day. We do all we can to protect ourselves and others. Although it hasn’t personally affected any of us (thankfully), our hearts ache for those who have had to fight this terrible virus. 

What do you do to relax?

Read, exercise, or watch a movie.

What else would you like to tell us about yourself?

I am a stay at home mom to my one and three year old. I am always looking for fun and interactive activities for them to do and we love the Connecting for Kids programs.

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

We love it! It's great for both my kids ages.

Which have been your favorite Connecting for Kids resources?

Music Therapy & More.

The area where I have grown the most...

Learning to be patient with my children and their emotional needs.

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

Helpless, sometimes. Other times I realize that it's okay and it will be okay.

The hardest thing for me to learn was...

That parenting is more so about learning things about yourself than learning about your child. I've learned so much about who I am from becoming a parent and I am so grateful for this opportunity to love and nurture my babies the way they should be.

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

I currently have my own blog website where I write about gentle parenting methods. Connecting with your child on an emotional level so they always feel loved and understood. My blog site is The Mindful Mom blog.

Claudia lives in North Ridgeville and has three children.

How are you and your family dealing with the COVID-19 pandemic?

The pandemic has been a challenge for my family. Virtual schooling was a novelty at first, but my kids quickly lost motivation to do the work and missed the opportunity to socialize with friends. Although I'm glad they are back in school, I still worry about the possibility of them getting sick with the virus. Even though we are taking things day by day, I also worry about the long-term effects the pandemic is having on my family’s mental health and mine. It's exacerbated my kid's depression. Sometimes, I feel helpless in what I can do, but I rely on my support system to get me through and it makes all the difference.

What do you do to relax?

Binge watch Netflix.

What else would you like to tell us about yourself?

I'm a mom warrior for my kids’ needs!

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

Provided opportunities to hear speakers on topics relevant to my situation.

Which have been your favorite Connecting for Kids resources?

The Facebook page and the Speaker Series featuring Gary Tonks from the Arc of Ohio.

My greatest lesson learned was...

I don't have to be perfect, but being consistent is key.

What I worry about most…

Is my son's future and what will happen to him when I'm gone.

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

Feeling helpless to do anything that will work for my child, and the loneliness I feel when others don't or aren't willing to understand our struggles.

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

Milestones National Autism Conference and The Arc of Ohio

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

It's definitely not a sprint and I'm stronger than I could ever have imagined.

Carly lives in Strongsville with her husband, Bill, and their two sons.

How are you and your family dealing with the COVID-19 pandemic?

Although the pandemic has been challenging, we have taken the time to reconnect but also to set boundaries and learn to take time to ourselves.

What do you do to relax?

Yoga, watch TV, spend time in nature, date night.

What else would you like to tell us about yourself?

I'm also a kindergarten teacher and I like to learn strategies to use with my own children as well as my students.

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

I learned about NEON from the Connecting for Kids Facebook group. Before things shut down, I attended several events, including the resource fair and a behavior speaker

Which have been your favorite Connecting for Kids resources?

I like the Facebook groups and live events, especially the Speakers Series.

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

You can do this. No matter what happens your child with special needs will be ok and you will be ok.

What I worry about most…

What my son's future holds. Will he be able to drive? Go to College? Hold a job? Live on his own?

The hardest thing for me to learn was...

To be vulnerable, to share our diagnosis and story with family and friends. I kept it a secret for a long time and just shouldered it all alone and I wish I would have reached out for help sooner.

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

I love finding books to read to my children and students to explain coping strategies. Some of my favorites are the Julia Cook books and the What Should Danny Do series.

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

My son has epilepsy and ADHD. He also struggles with gaining weight.

Catie lives in Amherst and has a daughter.

What do you do to relax?

Walk the dog, read, stay in touch with friends.

What else would you like to tell us about yourself?

We moved back to the area last year to be closer to family. Connecting for Kids has been a great resource for us and our daughter.

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

Since COVID, I’ve participated in a few webinars with other moms. It was wonderful hearing from others who were experiencing similar stresses and to gather ideas on how to cope. My daughter also uses a wheelchair to get around and so I’ve really appreciated all the information Connecting for Kids has about accessible parks in the area. Cascade has been our favorite so far. It can feel lonely being a parent to a child with special needs, especially this past year. Connecting for Kids reminds me that I’m not alone.

Which have been your favorite Connecting for Kids resources?

Webinars for caregivers, parks info, personal connections to families with children with similar disabilities.

The area where I have grown the most...

In the last year, I’ve learned to do a better job of taking small amounts of time for myself and doing something that helps recharge me. The Coffee and Chats helped me realize that while I don’t have big blocks of time to myself-I do have small ones. And finding a way to get the most of these moments-even if they are only a few minutes-has helped me feel like I have a little more control in what goes on in my day.

What I worry about most…

Is that I’m going to fail my daughter as a parent. It’s such an important job, and because she has a disability, I feel like there are even more ways than normal that I can screw it up. I think Connecting for Kids is really important in this regard. By offering community and resources and support, it makes the task of raising a special child feel less like a burden and more like a membership into a pretty awesome club.

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

That feeling of pride and awe that comes when they achieve a milestone they’ve been working towards. My daughter gets physical therapy twice a week, and I am constantly inspired by how hard she works, even as a three year old. Sometimes I hate that everything is harder for her-but she gets there on her own time, and it makes every milestone that much more special.

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

In addition to CFK, I am part of several Facebook groups for spina bifida.

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

For some background, my daughter is 3 years old. She has spina bifida, and uses a wheelchair to get around. We found out about her diagnosis when I was about 20 weeks pregnant, and together we underwent fetal surgery to repair her spine in Cincinnati. She is such a fun, sweet and spunky child. I grew up in Lorain, and we moved back to the area last year. We love it here, and are so grateful for organizations like Connecting for Kids who have helped make this transition easier.

Erin lives in Fairview Park and has two children.

How are you and your family dealing with the COVID-19 pandemic?

As a family, we did have a lot of changes with the pandemic. My husband is an essential worker so he was working overtime every week and was not home a lot. My daughter struggled for several months to get used to it. With her sensory issues, she had a difficult time not being around people because she definitely needs the contact with others for her sensory input. But we finally found a comfort area for her and us that worked after lot of phone calls with her OT. After a year of the pandemic, I feel like as a family we are all just getting into the swing of things.

What do you do to relax?

Crocheting

What else would you like to tell us about yourself?

I am very active in many of the school PTAs.

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

When we found out my daughter had sensory issues, Connecting for Kids helped us to set up services. It was a huge relief after years of trying to figure out what we could do to help her.

Which Connecting for Kids resources have you tapped into to help your child?

Music Therapy & More. Before the pandemic, we attended in person at Westlake Porter Public Library and recently have been doing the virtual Zoom sessions online.

If I could go back in time and talk to myself, I would say...

I am so glad I advocated for my child. I was a special needs kid and my mom is my strongest advocate. When my daughter was born I knew something was up because she needed a little more than her sister and everyone kept telling me to wait that she’ll just get through it and be fine. I had a dear friend, Elizabeth Malik, who I talked to many times because she was very active with Connecting for Kids and she told me to make the call and see how they can help us figure things out for Emma. I am so glad that we spoke up because she is thriving now with the help she received and I do not know where we would be without it.

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

Very frustrated. I want to help her but somehow it just seems that she is in so much pain there is nothing I can do to help her get to the other side. Because Connecting for Kids helped us find Abilities First for OT services, we have found some ways to cope and help her but there are still good and bad days.

The hardest thing for me to learn was...

That her behaviors and response are not my fault. Sometimes there’s just nothing we can do to help and that’s OK because we will get through them either way.

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

The Connecting for Kids newsletter and Facebook page

Melissa lives in Parma and has two children.

What do you do to relax?

I love to craft and read a good book.

What else would you like to tell us about yourself?

I am married to a wonderful man, Joe, who I consider a gift from God. We are a blended family. I am a mom to my bonus son, who is 17, and a younger son who is 10. We have two rescue dogs who are spoiled even more than our children. I’m a nurse by trade but a stay at home mom by choice. My youngest was diagnosed with ADHD and ODD at age 4. We received a diagnosis of autism spectrum disorder at the age of 8.

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

It has given us other families to relate to, vent to and to celebrate the victories!

Which have been your favorite Connecting for Kids resources?

We have really enjoyed the newsletters and the Coffee and Chat support group.

My greatest lesson learned was...

Don’t sweat the small stuff. Celebrate every victory no matter how small. Letting go of what I thought my son would be growing up.

What I worry about most…

Is if someone will be there for him when I’m no longer here. I know this is a huge concern to every parent. It just seems to weigh heavily on our minds.

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

Completely helpless. My son engages in frequent self-injurious behaviors. We go into survival mode to get through it. It’s exhausting

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

Wrightslaw: From Emotions to Advocacy I cannot express enough the importance of knowing your child educational rights and your rights as their parent!