Angela has one son and lives in Elyria.

What do you do to relax?

Read, dinner with friends, mindlessly scroll Facebook

What else would you like to tell us about yourself?

I'm a stay at home mom, my husband drives a truck, so I am our son’s primary care giver 95% of the time.

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

Before CFK we were with an OT who was not a good fit. CFK helped me realize I'm not a bad parent, my kid just struggles. And the organization connected us with our current OT, whom we love.

Which have been your favorite Connecting for Kids resources?

My son ADORES Teach Me to Play. And I swear the people who run it are magic - they get my son to cooperate and do things no one else can.

The best way I asked for support was...

Messaging CFK. By doing that I was able to join the CFK Families Group on Facebook. I know any time we are struggling to find care providers, or resources, they will help us.

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

Frustrated. I just want to yell at him, "Get it together!" But I know he can't help it.

I get embarrassed when...

My son gets over stimulated in public. His behavior becomes erratic and aggressive. He just appears to be undisciplined. CFK and our OT have given me tools to help reduce the times this happens, as well as ways to help calm him.

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

The Out of Sync Child by Carol Stock Kranowitz and the Sensory Processing Disorder website were a huge help!

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

It gets better. Sometimes slowly, but it gets better.

Shannon has two children and lives in Wellington

What do you do to relax?

Drink coffee, watch favorite shows, paint

What else would you like to tell us about yourself?

I am a Registered Behavior Technician (RBT), working with children with autism since I was 18.

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

I enjoy reading about similar family situations and the education programs in the community.

Which has been your favorite Connecting for Kids resource?

Facebook

The bad habit I picked up...

being a typical parent using negative punishment instead of positive reinforcement. Knowing the outcomes of both. Knowing I can do better but stuck in parent mode not therapist mode.

What I worry about most…

is my child struggling in school and throughout adulthood. Making the wrong decisions, and continuing to argue and fight his way out. I worry for his safety to make responsible safe choices for himself and others. He likes to be super silly, inappropriate to gain a laugh but usually it comes off awkward and annoying. I don't want to see him struggle with social cues. He’s developing attention seeking behaviors that are aggressive to himself or his parents and disruptive to the environment. I worry for his ability to tell himself no, to control his reactions.

I get embarrassed when...

my child is having behaviors. Anywhere, in any form. I am a trained RBT, a paraprofessional, and a behavioral therapist. Nothing is more embarrassing to me knowing I am trained in this line of work and I cannot seem to help my son. I know there is an emotional component to it, a parent/child connects. I can’t seem to get over that.

By: Jennifer Blankenship, Licensed Independent Social Worker, Board Certified Behavior Analyst, and experienced Food Allergy Mama.

Her private practice, North Star Family Guidance, LLC, is located in Chagrin Falls 

When you have a child with any condition that makes eating or swallowing difficult, some level of worry is to be expected and even helpful. However, more pervasive feelings of worry can produce unhealthy amounts of anxiety. Here are several ways to assist your child:

• Be careful with your words and the way you talk about your child’s condition. There is a big difference between, “It’s so hard for him and I worry all the time.” versus “He does have a lot of options and he knows how to keep himself safe.”
• Externalize the problem: Have your child think about what her anxiety looks like. Draw it and give it a name. Teach her to talk back to anxiety when necessary. Some kids prefer a stronger approach, such as “Stop it! You are not the boss of me!” while other kids prefer an approach of gratitude, such as “Thank you, Anxiety, for trying to keep me safe but you have done enough. I know just what to do!” Talk over each approach with your child and see which one feels the best.
• Get your child in the kitchen: Develop lists together of all the foods he can and will eat. Include him in the process of preparing food, creating some excitement if you can. Search new recipes together, try new spices, take a trip to the farmer’s market, pick your own berries, etc.
• Most importantly, learn to manage your own anxiety. Children are incredibly perceptive, so if you are radiating waves of anxiousness, it is very unlikely that your child will feel calm and in control.

Remember that anxiety can serve a purpose. It starts as a worry that is designed to keep us and our children safe. However, anxiety is worry that just gets carried away, and the best thing to do is stop it from gaining momentum by refusing to give it control. If you are feeling that anxiety has too much control over the life of you or your child, please seek help from a professional counselor.

By Sara Solet, M.A., CCC-SLP, Speech Spot 

Understanding if and how your child can benefit from school based and/or private based speech and language services can be confusing. As a Speech-Language Pathologist (SLP) that has worked in both a school setting and a private practice for the past 18 years, I hear many questions:

The school said my child was OK—do I still need private services?

To qualify for speech and language services within the school setting, your child’s communication needs to be having an “adverse effect on his/her education”. This means that some area of their communication must fall significantly below that of their typical peers. There are many cases where a child’s communication skills are simply not “low enough” to qualify for school services, but they are lower than their typical peers. This is present most in the younger years. There is a range for all skills to develop. What may fall into an age-appropriate error as a kindergartner will be a delayed skill in first grade. Unfortunately, schools cannot qualify kids on what might happen, so a child that presents in the lower end of the normal will likely not qualify. The problem lies in that if that child does not develop that skill within the next year or two, that skill will now be delayed. Private speech and language services are not bound by these guidelines and can provide intervention for those children on the lower end of the normal range or just below the normal range. Instead of “waiting to see” if a skill develops, a private SLP can work to develop these skills and bring your child more in line with his/her typical peers.

My child has been going to private speech therapy and now qualifies for school services—should I bother with school services?

YES! Your private SLP may be wonderful, but s/he is not in your child’s school. The school-based SLP can help your child succeed in school in many ways. The SLP can consult with the teacher and staff so that they are able to understand and teach your child in the most effective way. The school SLP can add accommodations (if necessary) to a child’s IEP allowing your child to better access his/her education. School therapy has many benefits: it shows children that communication is part of learning and can incorporate classroom topics/vocabulary. When done in a group, children often gain acceptance of their struggle because they see that they are not the only one and/or can have a peer model for their targeted skills. The SLP can target the biggest areas of need and support the progress you have already made in private therapy!

My child qualified for services at school, would my child benefit from private services as well?

Almost always yes…if your time and budget allow for it, private services will only help your child gain more skills and likely do so in less time than school services alone. A school SLP’s time is in high demand. A school SLP must provide therapy services for MANY students along with testing, report/IEP writing, progress notes, attending meetings, teacher/staff consultations, billing, hearing screenings, and numerous other activities. As a result of this workload, services are often done in a group and the minutes of service may not be as high as you would hope for. As your child changes grades and schools, it is common for the SLP to change as well, but in private therapy you are likely to have a more consistent therapist. Change can be good, because using a skill with various people in various settings demonstrates true mastery; however, long term relationships allow a bond to develop thus allowing a therapist to truly push a child to achieve all they are capable of. Private therapy often allows for more intense therapy (year round) for your child and usually allows more direct contact between the parent and the SLP, allowing for parent education and teaching of skills and thus better carryover of skills at home.

We were doing private, but now my child qualifies for school—should I quit private?

If possible, continuing private therapy is usually a good idea. School services have some limitations. Because school SLP’s are bound by the IEP, only a few targeted goals can be addressed on a consistent basis. Private SLP’s have more freedom to address numerous goals, as well as a need that may pop up suddenly. School SLP’s usually provide therapy within a small group setting (which can often be beneficial), but private services tend to be one-on-one. Often private services can provide more minutes of therapy per session. Another point to consider is that most children do not receive services over the summer, so private is a way to continue developing while not in school!

The school is dismissing my child, should I continue with private services?

It is best to seek advice from a private SLP. It is possible that a dismissal from school services means that the issue is no longer having an adverse effect on education, not that it is completely remediated. (A good example of this is when a child has a lisp. The issue no longer impedes education, but you may not want your child to have a lisp the rest of his life). Private therapists are able to work with a child until the communication difficulty is completely remediated or has reached a level of maximum success.

Do school SLP’s and private work on the same goals/needs?

In an ideal world, the school and private SLP target the same skills. While the private SLP has more freedom to work on many skills, the school SLP can focus on the 3-5 biggest areas of need. While the parent may need to be the go-between or at least give release to communicate, consultation between a school SLP and a private SLP is most beneficial for a child and can provide great results!

While the SLP’s in both private and school based services are dedicated to helping your child, the nature of the placement dictates many variables of intervention. There are many factors to consider when determining what services to give your child. Communication develops rapidly in early childhood and often the more input the child can receive, the better!

Annie has a daughter and lives in Lakewood

What do you do to relax?

I try to take time for yoga, baths, running, drinking wine, going on walks with my husband, and cooking.

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

When we received the diagnosis, I felt like I was driving a car blindfolded and without a map. I didn't know where to start. I didn't know what to do. CFK has been my map, pointing me where to go when I get to the fork in the road and giving me pep talks when I need them, letting me know I'm not the first to travel this road and it's going to be OK.

Which have been your favorite Connecting for Kids resources?

The Facebook group - I often find myself searching through old posts. It seems like every question I have has been asked before!

My greatest lesson learned was...

(that I'm still learning) is that I can't fix this. I tend to go into "super mom" mode sometimes and overbook our schedule with therapies and appointments and overextend myself by trying to do it all to somehow get to the point where this is suddenly OK or all fixed now. I often need to check in and remind myself that no amount of work or research or therapy will ever totally make this go away. And that's OK. My daughter will get better, and we will get worse at times, and we'll keep climbing.

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

There will be joy for you too. This is not the end. You will continue being a mom and doing mom things and your beautiful kiddo will continue to grow in her own, unique way. Your life may look a little different than you expected it would be and it's going to take some time to let go of those expectations. Try not to compare her with others, and try to enjoy her.

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

Her achievements and milestones are like the highest high! It takes her longer to learn things, so whenever we have a breakthrough, it feels like the greatest gift. The confidence and pride I see she gets in herself for learning something new is one of the best feelings I've ever had.

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

Finding Cooper's Voice is a heartfelt and real account from a mom who has a child with autism. Whenever I'm feeling alone, I read through those posts and remember there are many of us struggling and it helps me.

by Mary Verdi-Fletcher, Founding Artistic Director of The Dancing Wheels Company & School

I have had the sheer pleasure of talking to and meeting thousands of children over the span of 38 years performing and presenting in educational outreach programs all over the world through The Dancing Wheels Company & School. I believe firmly that reaching children at a very early age is important while they are impressionable and before they develop stereotypical attitudes and fears.

When meeting a person with a disability for the first time, the best thing to do is to allow a child to ask questions and to not pull them away if they are staring or are inquisitive. Understand that we are all different in a way, and that is OK. That is what makes for interesting friendships. For example, I use my wheelchair to get around while others use their legs and feet, but we are all able to get where we want to go!

Kathleen resides in Cleveland and is the mom of three children.

What do you do to relax?

I am autistic also so my favorite ways to relax are sensory activities. For example, I love to go into the living room after everyone is asleep and turn off all the lights. I turn on music that really embodies whatever I'm feeling, sit in a comfy seat, and just let it be the only thing I'm experiencing.

What else would you like to tell us about yourself?

My oldest child is 20. My youngest is 4. We've always homeschooled, eventually settling comfortably into unschooling. That means just living our lives and letting the kids learn naturally through their hobbies and interests instead of any formal schooling. This allows more time and energy for self care and life skills, that actually take real work for us. I compensate for my executive function delays by relying heavily on technology. Google has an incredible suite of tools, and I automate anything I can. Robots already clean my floors, toilets, and litter box. I can't wait until laundry folding machines are within my budget!

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

The biggest benefit for us is the sense of community and normalcy. The fact that SO many programs exist makes us feel like one of many, instead of one of the few odd men out. My youngest had developed an anxiety disorder by 3 years old because he was so alone in our old community.

Which have been your favorite Connecting for Kids resources?

Adapted storytimes and the Speaker Series have been great. Honestly, my family struggles with a bit of impostor syndrome and doesn't take advantage of as many resources as I'd like. I'm working on that, but am so used to being just a little too high functioning to deserve help that I'm still waiting to be told (like I always am) that my family is a burden, using up resources that are meant for families with more needs than us. Sarah has been clear that won't happen, but I have 40 years of conditioning saying otherwise.

The area where I have grown the most...

Is my patience. Before having children, I was such an angry person. I still hadn't been diagnosed with autism and the pressures, expectations, and behaviors of other people my whole life had been at odds with my own thoughts and behaviors. I was a cliché of anger, a leather jacket wearing, punk rocker, looking for a fight. The love I feel for my kids has softened me. My desire to support them has taught me to be more tolerant of the differences in attitudes and morality of others. It's helped me to become more goal oriented, instead of always getting caught up in the details.

What I worry about most…

I worry the most about something horrible happening to my kids. The older ones are so idealistic and trusting. I was the same way at their age, and countless awful people took advantage of me in countless ways. I was constantly targeted and victimized, and rarely even knew it until well after the fact. The youngest is the same way, and at this age it means he's prone to wandering and would happily wander off with a friendly stranger, in a city with one of the worst human trafficking rates in the country. The only time I'm ever at ease is when I have them all at home and know they're safe.

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

Wrong Planet is a web community designed for individuals (and their parents) with Autism, Asperger’s Syndrome, ADHD, PDDs, and other neurological differences.

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.