Sarah is the mother of three from Elyria.

Do you work outside the home? If so, what do you do?
I am an occupational therapist at the Mercy Health Children's Developmental Center in Amherst. I am a therapist in the schools and work at Menorah Park Nursing Home some weekends.

What do you do to relax?
I love to craft, read, watch TV, and shop when I have time.

What else would you like to tell us about yourself?
I am a mom to three amazing girls. My oldest two were born premature (26 weeks and 29 weeks) so since day one, we have been on a journey I never thought I'd ever be on. When my second daughter was born, we found out she had PVL (periventricular leukomalacia) which turned into a CP (cerebral palsy) diagnosis. I try my best to work with her each day but it gets tough to balance. I struggle because sometimes I want to just be a mom and sit back and watch my kids play, but I am constantly trying to do things that will strengthen and improve my daughter’s abilities. I am blessed though because I know my path in life brought me to this moment so I would be prepared and able to be the best mother I could be. It has helped me see the needs in the community for our kids and I am working hard to make things more accessible to them. I am scared a lot of the time, wondering what lies ahead, but each day I am beyond blessed as I watch her succeed in ways I never thought possible.

What benefits has Connecting for Kids brought to you and your family?
I reached out to Connecting for Kids when my daughter first got her CP diagnosis. There are no other support groups in the area for cerebral palsy and I was grasping for anything and anyone I could find to make sense of it all. I was connected with some people but I just wasn't ready. Eventually, after coming to terms with the new diagnosis, I was more open to getting involved. CFK has since developed a Moderate-to-Severe Disabilities Facebook group which has connected me to SO MANY amazing families who are in similar situations. I can reach out with questions about therapies, adaptive classes, equipment, resources, etc. The list goes on and on. It gets lonely in the special needs world but CFK offers us an amazing group of people to connect with. We have gotten together for lunches, dinners, swimming, and Go Baby Go car rides at the park, and recently have become very good friends with some truly amazing families who I consider some of my very best friends.

Which have been your favorite Connecting for Kids resources?
I have benefited the most from the Moderate-to-Severe Disabilities Facebook group and the Parent Match program. These resources have connected me to so many wonderful people and so many resources. The Meet and Greet is amazing and allowed me to find programs in the community I didn't even know were out there.

If I could go back in time and talk to myself the day we got the diagnosis I would say...
"Let me give you a hug"...It's a terrifying diagnosis because there is so much that is unknown, especially at a very early age. I would tell myself that right now, it is ok to be scared, and mad, and depressed because this is not what you had planned. I would tell myself that things will get overwhelming, all the appointments, the specialists, the therapists, the equipment, the home exercises, etc. but it will be manageable. I would then tell myself that this is still your child, your love, and each day, you love that child the best you can. You will realize that sometimes, you don't see the diagnosis, you just see your child as who they are and you love them no matter what. There will be many days, more than not, that you hate the diagnosis and you still wish for things to be different, but you will begin to see the world from a whole new perspective and cherish the "little" milestones and huge accomplishments. Take support from family, friends, and whoever offers it because you will need a break and seek out families in similar situations.

I get embarrassed when...
I get embarrassed when we go in public and I have to carry her, help her stand, or constantly help her sit up. We recently got a wheel chair, and I was scared to death to get it, but since we have gotten it, it has become my best friend.  She is no longer the big girl in a stroller, she is a 4-year-old in a cool pink wheel chair and it gives people a little better understanding of what is going on with her.  I get embarrassed when I have to lug the walker, a high chair, an adapted chair, an adapted bike, an adapted car, and/or braces when we go to a get together or go out in public. I would do anything for her to be able to sit in a regular chair, walk and ride a regular bike.

I’ll also say, between the years of 2-4 for me were very hard.  I was faced with the reality that my child is not where she should be. Once I came to terms with her deficits and her own individual strengths, it has made it less embarrassing to be out in public because I have embraced who she is.

The best thing about parenting a child who struggles is...
I see small miracles happen each day with each new skill gained, no matter how small. The long and difficult journey makes it that much more rewarding! She is becoming more aware of her skills and now also becomes excited and proud over the little things like holding a cup with two hands!
 
We'd love to know if you have any go-to resources such as blogs, websites, or books that we can share with other parents.
Welcome to Holland, by Emily Pearl Kingsley, is an amazing poem and was a huge help to me when we got the CP diagnosis. I frequently think about it and it helps me to remember that this journey is not the one I had planned but it is still beautiful. Another great Facebook group is: CP Warriors, Mommies, Daddies, Grandparents and Caregivers. It is run by a mom of a girl with CP and has members from all over. It is a wealth of knowledge and support for treatments, therapies, equipment, etc. I have reached out many times to get information from others who have already gone through it!

By: Nicole Gerami, M.A., CCC-SLP
Speech Language Pathologist and owner of Nicole Gerami, LLC and the FIT Program
 
Many parents of children with special needs consider adding a social skills group to their child's therapeutic program. Early childhood is the time when kids learn extremely important foundation skills so that they can engage in conversations, relate to others, and, ultimately, make friends. Social skills are tied to many other aspects of development, including language and social emotional development. By nature, social skills happen in a dynamic fashion, with people reacting to each other's comments, questions, facial expressions and body language.

Social skills groups, when well taught and balanced with typical peers, provide a naturalistic environment in which children can practice conversation, engagement and cooperative play with each other. Think of groups as a venue where kids can work on the performance aspect of their developing social skills as opposed to simply learning skills in a one-on-one situation. A well-crafted social skills group should be run by a licensed professional such as a speech language pathologist (SLP). These individuals are experts in understanding exactly which skills a child needs to develop.

For example, a group led by a speech language pathologist would focus on communicative  functions such as greeting others, taking turns, answering, requesting, thinking flexibly, and even refraining from interfering behaviors. As well, the SLP knows how to encourage eye contact and help children become focused on each other rather than their own thoughts or objects and events in their environment. 

The best social skills groups are formed with children who have similar profiles, cognitive abilities and interests. The format should include a direct lesson followed by cooperative games, table-activities and play. There are many curricula out there that target social skills.  Your professional will pick a program that best suits the needs of the children in the group while also designing a treatment plan with the unique needs of your child in mind.

Q: "Can my child with special needs attend sleep away camp at Camp Cheerful and what are some tips to make the transition to camp easier?”

A: Kathy Henry, Manager of Marketing Communications,
Achievement Centers for Children
 
As a parent of a child with special needs, you might be a little apprehensive about sending your child to an overnight camp, especially the first time. A little preparation ahead of time will help the transition for your child, and for your family.

Tips to make the transition easier:

- Visit the camp with your child.  Call to have a tour with your child before their camp session. Check out all the different activity areas with your child, such as swimming, fishing, horse barn, games, camp fires, crafts, and especially their sleeping cabin. This will help them visualize their days and help to reduce their anxiety.

- Take photos at camp during your visit. Use the photos to talk with your child about what they will be doing at camp. Share positive and consistent messages to them – your attitude will be contagious.

- Involve your child in their packing. Get a list of what to bring, and what not to bring from the camp. Let your child make choices about what they will bring – blue shorts or green shorts?

- Practice sleepover. Arrange to have your child sleep overnight at a friend or relative’s house to feel more comfortable away from you.

- Tuck a note of encouragement or photo into your child’s bag to remind them of home.

The Achievement Centers for Children Camp Cheerful offers residential co-ed sessions in a beautiful outdoor environment in the Cleveland Metroparks for children and adults ages 7 and older with special needs. Camp counselors are experienced in caring for campers with special needs and a nurse is on duty 24 hours a day. Siblings and friends are welcome to join campers for a week of fun!

Your reward for your thoughtful preparation will be a child that returns home with smiles and stories, has gained a little independence and confidence, and is anxious to return to camp.

Joanne is the mother of 2 from Lakewood.

Do you work outside the home? If so, what do you do?
I am a Research Analyst for a bank.

What do you do to relax?
I run and play the sax.

What else would you like to tell us about yourself?
I like to stay busy and have a pretty active life.

What benefits has Connecting for Kids brought to you and your family?
We have gotten many good recommendations on programming as well as connected with other families.

What has been your favorite Connecting for Kids resource?
The Meet and Greet event to learn more about therapies offered and summer camps.

If I could go back in time and talk to myself the day we got the diagnosis I would say...
I would be more open about our struggles early on. I feel like I spent a great deal of time trying to convince friends and family my kid was "fine". Once I let go of that and became open with others about our struggles I began to really be able to dig in and help my son by getting the help he needed and the friends I needed for the journey.

The hardest thing for me to learn was...
Not to compare my child to typical kids. Even if the accomplishment seems small compared to what other people's children do, not to disregard it but celebrate the victory.

The best thing about parenting a child who struggles is...
How it changes your outlook on life. My son loves the little things in life. The little things, that most kids don't even notice, bring him such joy. I envy how happy he is and try to experience joy from the smallest of things as well.

We'd love to know if you have any go-to resources such as blogs, websites, or books that we can share with other parents.
I'm a research analyst by profession so I'm always "researching" ways to help my kids. I try to keep learning and trying different things with my kids hoping to stumble on the best combination.

Is there anything else about your journey that you would like to share with other parents?
You are your child's best advocate. Don't forget that. There have been times when professionals have told us one thing although I truly believed something else. Follow your gut. Don't discount what people tell you but always do your homework and be his/her biggest advocate. The other thing I would say is things are constantly changing. If you are in a rough patch now that can change too so hang in there.

Q:"Why should I attend the upcoming Milestones ASD Conference?"

A: Beth Thompson, MSSA, LSW
Program Director for Milestones Autism Resources

When I first entered the disability services world a decade ago I didn’t know where to turn for help with my students on the autism spectrum; then I found the Milestones Conference.  Ten years later, I am proud to be a part of the Milestones staff as we organize our 15th Annual Conference on June 15th and 16th at the IX Center!

Milestones’ Annual Autism Conference has strived to be a forum that would best serve the needs of families, individuals with ASD, and professionals serving the autism community.

As we plan for our 15th anniversary, we are proud to announce an exciting conference kick-off event: “A Special Evening with Temple Grandin”. A celebrated author and subject of an award-winning HBO feature film, Dr. Grandin will join us on June 14 at Playhouse Square for an inspiring program followed by a book signing. This will be an amazing opportunity to hear from a world-renowned speaker and advocate who provides a unique firsthand account of living with autism.

Our conference enables family members to choose from a wide variety of session topics to learn practical strategies for meeting the challenges of autism. Learning “what works” from local and national experts can improve outcomes for children of all ages. The conference connects parents to hundreds of trusted autism resources under one roof. One of the greatest benefits of family members attending the conference is that they get to meet others walking in their shoes.

Milestones believes that all parents should be able to access the supports and information their child needs regardless of their ability to pay.   Our conference scholarships are not income-based and are available to anyone that could benefit from the information presented.

To learn more about scholarships, keynotes, workshops, networking lunches and the Temple Grandin event please visit http://milestones.org/conferences/

Crissy is a mom of two from North Ridgeville

Do you work outside the home?
I'm a stay at home mom.

What do you do to relax?
Yoga

What else would you like to tell us about yourself?
I used to manage a local play group of about 30 families when I just had one child. It was pretty great; we'd get together for play dates and outings a few times every week. Once the kids started getting older and going to school it got harder and harder to get the group together. While it may not be the same type of group, I'm very grateful to CFK for giving us the opportunity to meet new families and make new friends.

What benefits has Connecting for Kids brought to you and your family?
CFK has been such a huge resource for us since my son's diagnosis! I attended a seminar at the Westlake Porter Public Library that ended up introducing me to my son's speech therapist. We've also learned invaluable strategies in the Teach Me to Play and Music Therapy & More programs. The Facebook Chat Group has also been amazing for advice, referrals and support. Hearing a doctor tell you that something is different about your child can be very difficult. There are a lot of emotions that come along with it -- sadness, confusion, anger, isolation, fear. CFK gave me the support and the resources I needed to ease all of those feelings and help me move forward in a positive direction to give my son what he needs to thrive.

We never have found my son's current School - Middleburg Early Education Center - had it not been for the connections we made in CFK. I have seen so much growth over the past year, both socially and academically, and we attribute a lot of that to the outstanding education and support he's getting at that school.

Which Connecting for Kids resources have you tapped into to help your child?
Teach Me To Play and Music Therapy are by far the resources we utilize the most. We've been attending every month since I was introduced to the organization! The podcasts have also been extremely helpful as I (currently) live pretty far away so I can't attend a lot of the seminars CFK puts on. The website has been a huge help to me as well, not only for general information and links to helpful sites, but also for the funding resource links. One of my biggest concerns when my son received his diagnosis was "how are we going to pay for all of this?" and with the funding resources I was introduced to on the CFK site, we were able to get the assistance we needed.

If I could go back in time and talk to myself the day we got the diagnosis I would say...
Just breathe. Everything will be ok!! I'll be honest - when my son was diagnosed with Autism Spectrum Disorder, I didn't know much about it. I "thought" I did...but I didn't. I felt sad for him and angry at myself for not seeing it sooner since many of the "signs" were there from very early on. I let my mind spin out of control and was worried about everything. How we were going to afford all the therapies he needed? How would I manage to grow my relationship with my (then) new baby when I had to focus so much time and attention on my son? How would we tell our family and friends? What would our lives be like moving forward? It was definitely a grieving process for sure. But you know what? Everything worked out. People always say things like "I don't think I could handle something like that" and actually, I used to be one of those people. But as parents, we do what is needed to make things work. We grow and adapt to new routines, new ways of thinking and doing things, and it becomes our normal. Is our life different now? Somewhat, but we're used to it. One thing I know for sure is that I don't think I'd feel this way had I not found CFK. Talking to Sarah, meeting other families with similar challenges, learning about our options and our rights... I don't know how I would have gotten though the first few months without CFK.

What I worry about most…
The future. Don't we all? My son is 5 and will be starting kindergarten next fall. I worry about him being in school all day without me. What if he has a potty accident? What if he doesn't eat his lunch? And my biggest worry - What if he gets bullied? Just the thought of someone hurting him makes me want to cry. How will our lives change as he gets older? How will he do in school? Will he be able to understand/play sports? Will he date? Will he be able to hold down a job? Will he be able to live on his own someday? One of the great things about CFK is that it brings together a diverse blend of families with kids of ALL ages. It’s nice to have some of your fears consoled when you hear success stories about older kids/teens doing well and adapting to life as they get older.

The hardest thing for me to learn was...
I can't control everything. I like predictability in my life. Having a child with ASD can definitely be unpredictable at times! I'm (slowly!) learning to adjust and try to go with the flow when things go awry and make the best of a situation that may not always be ideal.

We'd love to know if you have any go-to resources such as blogs, websites, or books that we can share with other parents.
Everything worthwhile that I've found, I've found through CFK!

Is there anything else about your journey that you would like to share with other parents?
Even after your child gets a diagnosis, they are still the same person. Sometimes it can be easy to get swallowed up in the medical terminology and lose sight of that. You child is still the sweet, funny, quirky kid that you know and love and that doesn't change. Learn to see things through their eyes instead of trying to change them and make them see things through yours.

Laurie is the mom of two from Mentor

What do you do to relax?
Netflix and wine once the kids are in bed! My husband and I were much more social before we had our kids. I used to sing and play guitar and piano. He was in a band and played hockey. It's hard to find time for anything now. I'm thankful for this group so I can virtually talk to other parents in similar situations to ours.

Which have been your favorite Connecting for Kids resources?
The Facebook Chat Group helps me immensely.  I also have attended Coffee and Chat programs.

What I worry about most…
I worry about the future. It's hard to imagine what next month will bring, let alone the next several years or even adulthood. I imagine most special needs parents lose sleep over this too.

When my child's behavior gets out of control, I feel...
Angry at the world, jealous of "typical" families and sad, sometimes heartbroken, that he is struggling.

The hardest thing for me to learn was...
Not to compare our lives with others. I still struggle with it sometimes.

We'd love to know if you have any go-to resources.
My go-to is the CFK Facebook Chat Group. I also count on our therapy team at Building Blocks Therapy for help and advice.

Is there anything about your journey that you would like to share with other parents?
It's SO HARD, but there is also a lot of joy. We may never be a "normal" family, but we have our own kind of normal. And I am so, so, SO grateful for the good days, and even just the good moments. I'm thankful for this organization because I did not know a single other special needs parent before joining, and we found Connecting for Kids almost immediately after my son's diagnosis. It's been a huge help.

"What is the difference between an IEP and a 504 Plan?"

by Linda M. Gorczynski, Attorney
Hickman & Lowder Co. L.P.A.  

Both IEP and 504 plans can offer special education, regular education, therapies and accommodations for students with disabilities.  And public schools are obligated to provide a Free Appropriate Public Education (FAPE) to students under either plan.  However, they come from different federal laws; and they have different eligibility criteria, definitions of FAPE, and procedural requirements. 

Section 504 (of the Rehabilitation Act of 1973) protects all persons with disabilities from discrimination by places (including schools) that receive federal funding.  To qualify under Section 504, a student must have a physical or mental impairment that substantially limits one or more major life activities. Major life activities include things like caring for one's self, walking, seeing, hearing, speaking, breathing, learning, working, etc.  The 504 plan provides a FAPE when it meets the individual educational needs of students with disabilities as adequately as the needs of students without disabilities.  Practically speaking, most schools use 504 plans for students whose needs can be met with accommodations alone (i.e. special seating, shortened school day, access to epi-pens, excusal from phys-ed, etc.)

An IEP falls under the Individuals with Disabilities Education Act (IDEA), which provides special education and related services to students with disabilities.  Qualifying for an IEP is more difficult but brings with it more rights and procedural requirements.  A student must meet one of the thirteen, very specific disability categories such as: Other Health Impairment or Specific Learning Disability.  The disability must also adversely affect the student’s educational performance, requiring specialized instruction.  Under an IEP, a school must provide a FAPE in the least restrictive environment, so that a student makes adequate progress, as measured against his own abilities and accomplishments, not against the typical population. 

Which plan is the right plan?  It all depends on the particular child’s needs.

This article is intended to provide general information about the law.  Before applying this information to a specific legal problem, readers are urged to seek advice from an attorney.

Johanna is the mom of two.

Do you work outside the home? If so, what do you do?
I work full-time at Grace Church as the Worship Ministry Assistant.

What do you do to relax?
I like to spend time with my girls, read, listen to worship music, and watch NCIS.

What else would you like to tell us about yourself?

I have been a single Mom for almost eleven years. I love Jesus and my girls. Nothing makes me happier than spending time with them with our family and friends, just enjoying life.

What benefits has Connecting for Kids brought to you and your family?
Being a single Mom can be very isolating in itself, and adding special needs multiples that, at least for me. Connecting for Kids has so many great resources and so much information to help navigate every aspect of being a parent of a child with special needs. My daughter participated in the music therapy class and that was wonderful. There is always someone there to offer support and advice if you need it. There is no judgment. CFK has helped me to not feel so alone.

Which have been your favorite Connecting for Kids resources?
My favorite Connecting for Kids resource has been the staff and parents. The info on the website is such a blessing, but talking with people who have been in similar situations has been the best part. The encouragement from the staff and parents has been incredible.

My greatest lesson learned...
is balance. Having two children, one with struggles and one without, has taught me balance because I need to always make sure both of my girls feel loved and wanted. Spending time with each of my girls is important, both to them and to me. I have had to learn how to balance this dynamic in our family, and it has been a blessing to all of us.

The area where I have grown the most...
is in asking for help and advice. I used to think I had to do everything and have all the answers. I used to put so much pressure on myself to always get it right. Being on this journey has taught me that I do not have to do it all or know it all. There are people out there who have similar experiences. I have learned to trust God through it all.

The best thing about parenting a child who struggles is...
it helps me to keep my perspective. Celebrating the small victories helps me to see life in a different way. My daughter is an inspiration to me because even though she struggles every day, she keeps fighting and keeps pressing on. She continues to teach me life lessons, and I am thankful for that.

We'd love to know if you have any go-to resources such as blogs, websites, or books that we can share with other parents.

As for books, the Bible is my biggest resource.  There are so many great resources out there as far as websites go.  Besides CKF, I like the Sensory Spectrum and Understood.org. 

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

You are not alone. Even though it feels like it at times, and you think it is easier to stay home and not reach out, there are people who understand. There are people who want to help and offer encouragement. You have to take the first step and reach out, get connected. I promise you it is worth it.

“How do I know if ADHD meds are right for my child with an ADHD diagnosis?"

by Nicole Robbins MSN PMHNP-BC, PsychBC

When I diagnose a child with ADHD I see a range of responses from parents and children. Parents’ responses often include relief at understanding their child’s struggle, confusion, worry as to how to help their child, and sometimes guilt that they may have misinterpreted their child’s behavior. Children are often relieved when I explain why things may have been difficult, and that my job is to help them be the super awesome kid that I know they are. Children respond when I explain to their parents that they may have tried their best and have stopped trying because it hurts too much to try and fail. My job is to foster hope in parents and their children; we can work together to help their child to be the best they can be.
   
The information below is to help you make informed decisions when deciding whether medication is the right option for your child.

What is ADHD?

Attention Deficit Hyperactivity Disorder (ADHD) is a diagnostic label given to children who struggle with inattention, hyperactivity, and/or impulsivity. It is considered a developmental disorder and symptoms must be present prior to age twelve. ADHD is classified as primarily hyperactive/impulsive type, primarily inattentive type, or combined type. One child’s struggle with ADHD symptoms may be very different from another’s.

You may want to seek an ADHD evaluation if:

Your child’s teacher, principal, or school counselor suggest it may be helpful for your child. Teachers can often identify a child who may need to be evaluated for ADHD. They work with your child in the most structured environment and ask them to concentrate and focus for longer periods of time than may occur at home.

Your child is frustrated with themselves or their behavior. If your child has voiced concerns about being “bad” or “stupid,” a psychiatric evaluation may provide insight. Depression, anxiety, and trauma can mimic ADHD and it is important to have a professional who is well-versed in these conditions to determine next steps. Counseling can help in improving self-esteem and decreasing anxiety, depression, and trauma symptoms along with possible medication.

You know your child is intelligent but they are increasingly struggling with their school work and begin avoiding homework, forgetting their school books or assignments, or procrastinating on school work.

Important Considerations

When your child’s symptoms prevent them from reaching their potential, it may be time to consider treatment with medication. Each symptom set includes treatment goals.

Untreated ADHD can have a profound impact on a child’s self-esteem. Children see they are corrected more often than their classmates. They want to do well in school and when their best efforts don’t allow them to keep up they may feel “stupid” or that there is something wrong with them. Impulsive and hyperactive children are sometimes avoided because they can be frustrating to be around, have difficulty waiting their turn, and may struggle to interact appropriately with others and pick up on social cues. It is easier for parents and teachers to miss predominately inattentive type ADHD. These children tend to blend in although they may begin to struggle academically as school work becomes increasingly difficult. Untreated ADHD may lead to symptoms of anxiety and depression.

It can be difficult for parents to consider medication for their child. Parents often voice concern related to potential for addiction and abuse. It is important to educate older children and teenagers about abuse potential of medications and possible consequences of taking medication other than how it is prescribed. Studies have shown that those untreated for ADHD have a higher incidence of drug and alcohol abuse.

Your child may be a wealth of information as to whether a medication is working. Mood and self-esteem dramatically improve when children begin to succeed in school. Homework is no longer a two hour ordeal to complete ten minutes of work, they remember to bring assignments home and turn them in, and are no longer getting in trouble several times a day at school. However, your child shouldn’t appear emotionless or feel like they are not themselves. If you feel your child is not acting like themselves on the medication or if your child’s mood is worse as the medication is wearing off, make your prescriber aware.

If you are wondering about ADHD, I encourage you to consider sitting down with your primary care physician, psychiatrist, or psychiatric nurse practitioner to learn about treatment options available and to have questions answered. Our goal as providers is not to force you to treat your child with medication.  We enjoy being a resource to you and your family and we may be able to suggest other beneficial services or discuss possible school accommodations.

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