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The Monthly Connect - Online

Welcome to The Monthly Connect - Online. The Monthy Connect is sent out regularly via email to Connecting for Kids subscribers. This page also contains many of our great articles. To get a copy of The Monthly Connect in your email inbox next time it comes out, Join Us today!

  • 04 Jun 2016 7:54 PM | Anonymous member (Administrator)

    Virtual Reality: Friend or Foe?

    by Joe Little

    Five Horizons Foundation

    You may be thinking that an article about virtual reality is a little premature, but 2016 is the year of the headset!  Developers like Facebook’s Oculus Rift, HTC, and Playstation are all getting into the virtual reality game and the initial results are pretty good.  My question to our community is; how will it impact our special needs kiddos, especially those on the spectrum?  If your son is anything like mine, he can get lost in his iPad for hours on end if I don’t reign him in.  What if he had access to a literal “different world?”  I downloaded Minecraft the other day and tested it out myself with my Samsung phone and goggles.  20 minutes went by in the blink of an eye and I don’t even enjoy that game!

    This article is not a position statement, rather a conversation starter.  I’m curious about the opinions of other parents on this technology.  I can also see a huge upside.  Imagine your child being able to wear glasses that show them visual representations of what’s being said to them!  You speak the words, “juice or milk?” and they see images of each with the word “or” in the middle.  No more icons all over the fridge!  We are just scratching the surface of what’s possible here but rest assured, it’s coming.

  • 04 Jun 2016 7:47 PM | Anonymous member (Administrator)


    If you would you like to be featured in an upcoming column, please fill out the online form.

    Carla is the mom of a son.

    Do you work outside the home? If so, what do you do?
    I am an RN and in management. My specialty areas are Labor and Delivery, Critical Care and Sexual Assault Nurse Examiner (SANE).

    What do you do to relax?
    During my quiet times I love to doodle, draw, paint and read books. I also enjoy spending time with family and riding my motorcycle. Out on the road with the wind in my face I can make almost any problem go away, just for a little while.

    What else would you like to tell us about yourself?
    My son is my everything! Yes, he has an autism spectrum disorder (ASD), but he is loving, caring, sweet, playful and I wouldn't change him for anything in the world. He is perfect.

    What benefits has Connecting for Kids brought to you and your family?
    Kinship and friendship is the foundation of what Connecting for Kids has provided for me. They have also provided resources and advice along with much needed education. Connecting for Kids means I'm not alone!

    Which have been your favorite Connecting for Kids resources?
    My favorite resource provided by Connecting for Kids has been reaching out for help and someone always being there!

    What I worry about most…
    As a parent of a child with autism what I worry about most is my son’s future. Being so uncertain about what and how I teach him and how those things will impact the rest of his life. I want the best for him. I worry about whether or not he will be able to take care of himself in adulthood and I worry about my own health and how long I will be here for him.

    The hardest thing for me to learn was...
    The hardest thing for me to learn was my child does not have a disease. Autism is a learning disability, social anxiety disorder, a sensory processing disorder, and inability to communicate among many other things but my child is not dying.

    The worst thing about parenting a child who struggles is...
    The worst thing about parenting a child who struggles is not knowing if what I am doing is the best or enough. All the guidance in the world and there are still no solid answers.

    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 am part of the Connecting for Kids Facebook Chat Group and that seems to be my number one resource. I get advice from educated, experienced people and most importantly meet other parents like myself.

    Is there anything else about your journey that you would like to share with other parents?
    I have learned that every parent and child's experience with autism is individual and unique. Some may think I'm crazy but I wouldn't change it for anything in the world. I love my son just the way he is.


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  • 12 May 2016 1:46 PM | Anonymous member (Administrator)

    If you would you like to be featured in an upcoming column, please fill out the online form.

    Lisa is the mom of three children.

    Do you work outside the home?
    I am a first grade teacher.   

    What do you do to relax?

    Not much.  I need to get better at this one.

    What else would you like to tell us about yourself?
    Even with all its challenges…there isn't really much I would change about my life.

    What benefits has Connecting for Kids brought to you and your family?
    It has been a pleasure and an honor to watch this amazing organization grow from the ground up.  It has truly filled a void in our community.

    Which have been your favorite Connecting for Kids resources?

    I do enjoy the speakers, the Meet and Greet in the spring and the annual fundraiser. 

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

    I KNEW IT!!!!  I told you to trust yourself!  Even when the doctors said, “give it time.”  I'm glad you trusted your instincts and got the evaluations and eventually the diagnosis necessary to open doors for your family.

    Everything is going to be OK.  I know right now it may not seem so, but have faith that it's all going to be exactly the way it’s supposed to be.  I know this isn't the road you expected to travel, but there will be some awesome surprises along the way.  These surprises will come in every size, shape, and color you can imagine, but when they appear…rely on them and trust that they have your child's best interest at heart.  They will eventually become a very important part of your life and you won't be able to remember how you ever survived without them.

    Live in the moment.  Try not to let worrying about the future take away from the joys you have right now.  There are so many amazing things that come with parenting a child with special needs.  Someday you will look back and say, “I wouldn't change one thing.”                                                                        

    What I worry about the most...
    …is that I won't always be there to take care of my child (morbid thought, right?)  Has my husband been paying attention to all the little details…what goes in his lunch box?  How he likes his banana cut? What time he starts his homework?  How to best calm him down when he's upset?  Will he remember to tickle him before bed?

    Will he advocate for him?  Will he attend the IEP meetings?  Will he remember to be the calming presence when the kids lose their minds? 

    Have I done a good job preparing him to do these things?  Have I done a good job preparing my children to be independent and advocate for themselves?  Will they all be OK without me?  Will I be OK without them? 

    I've really got to stop worrying about this :-)

    My greatest lesson learned...    
    People usually don't understand what it’s like to have a child with special needs unless they have one themselves…and that's OK.

    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've read so many books that I've lost count.  But that is usually where I start looking for help.  I go to Amazon Smile (and select CFK as my charity) and just type in what I'm looking for.  I usually like the true, honest narratives better than the text books.  And, of course, if you're on the CFK website you're already in the right place to find the help you need!

    Is there anything else about your journey that you would like to share with other parents?
    I've probably been where you are right now.  I've had the same fears, worries, anxieties, questions, concerns and hopeless feelings.  I get it…many of us do.  You are not alone and there are many parents that would love to be your sounding board and your shoulder when you need to cry. Becoming friends with other parents of kids with special needs was, by far, the best thing I ever did for myself and my family.  They have been an invaluable resource and I can't imagine my life without them.  It does get easier and everything is going to be OK.          
     

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  • 12 May 2016 1:34 PM | Anonymous member (Administrator)

    Q: Why Would I Want My Child to Participate in a Research Trial?

    A: Dr. Nora McNamara, University Hospitals Case Medical Center, Child & Adolescent Psychiatry Principal Investigator of Research

    The United States Food and Drug Administration (FDA) has established a continuum of events necessary for approval of any new medical treatment or device that begins with animal studies, moves to small Phase I studies with healthy adult volunteers, and if the investigational treatment is deemed safe, continues with Phase II studies in affected individuals, and then Phase III studies that compare the treatment under study to either a placebo (something that looks like the investigational treatment but is inactive) or to an already established/FDA indicated treatment. This process takes years, yet it is essential as the best and safest way to determine if new treatments are helpful for many childhood conditions. I have been the Principal Investigator at the Discovery and Wellness Center for Children (DWCC), the University Hospitals Case Medical Center’s child and adolescent psychiatry research group, since 2012. Since that time, the DWCC has participated in Phase II and Phase III trials for new medications for children and adolescents with depression, bipolar spectrum disorders, schizophrenia, ADHD, Tourette’s Syndrome,  anxiety disorders, and Autism Spectrum Disorder. More than half of the medications tested were not approved by the FDA, because there was no observed or recorded improvement in the group of children who received the medication compared to the group of children treated with a placebo.

    So why, knowing this, would anybody ever want to enroll a child or adolescent in a clinical trial of a proposed new treatment? There is actually only one legitimate reason for anybody to volunteer to put themselves or their child at risk (risk of getting a placebo, risk of having potential side effects from the study medication, risk of having one’s blood drawn repeatedly, risk of boredom from long visits at our center answering repetitive/dry questions, among many other risks). That only legitimate reason is ALTRUISM. The youngsters that volunteer to be in clinical trials almost 100% of the time do so because they want to help other children in the future, children they will never even meet. That is a particular behavior that only the most caring human beings ever get a chance to practice. At the DWCC, we have dozens of children and adolescents and young adults every week who freely give us their assent to participate in a long and potentially uncomfortable process that may not even help them as individuals feel any better, because they want to help out their fellow human beings!

    Every day, we DWCC researchers are awed by the bravery, the honesty, and the determination of our young subjects. We are grateful to have the opportunity to get to know them and to work with their families, we are constantly amazed by their determination to do something so meaningful at such young ages, and we are forever in their debt for those just-a-hair-less-than 50% trials that find that the treatment was effective and safe, and lead to new FDA approved treatments for so many conditions. The next time you or your child take a medication that has been FDA approved for whatever you hope the medication will help with, you might like to say a silent “Thank you!” inside your head to all of the hundreds of the unknown, brave volunteers who tried that medication (or a placebo!) in those Phase I, II, and III studies years before your medicine was available for regular clinicians to prescribe, because those unknown heroes, they did it just for you!

  • 08 Apr 2016 11:56 AM | Anonymous member (Administrator)

    Paula C. Papp
    MA Ed from Baldwin Wallace College in Reading Instruction
    Early Intervention Specialist


    It's more complicated than you think!

    There are lots of rules that dictate how our spoken language gets put down on paper.  Helping your child become familiar with these "conventions of print" will support their reading and writing development.

    Here are some suggestions for a younger or a less experienced child:
    •    Let your child get the book "ready to read."  Hand over the book upside down or backwards and see if your child can turn it the right way. 
    •    You can be soooo silly!  Start reading a familiar book from the back to the front, or maybe start in the middle. 
    •    Touch each page as you go along.  Children usually enjoy turning pages.  We read the left page, then the right page, then we turn the page. 
    •    Point out the pictures and the words.  On the page of a picture book, the words tell us about the picture--and the picture tells us about the words.  We read the words, and we look at the pictures. 

    As your child becomes more experienced:
    •    Track the print with your finger as you read.  Your child will become familiar with starting at the top of the page, moving along the line from left to right etc.
    •    Provide "left to right" experiences throughout the day.  How many toy cars do we have?  Line them up and count from left to right.  When setting the table for dinner--put the napkin down, then the fork, then the plate, then the spoon or knife. 
    •    Place magnetic letters and numbers on the refrigerator.  Help your child sort the letters from the numbers.  Can you find all the letters that have a hole in them?
    •    Find a favorite or repeating line of a book or song.  On small pieces of paper or note cards write (with your child watching of course) one word on each piece of paper.  Now line them up and point to each one as you read them.  How about mixing them up and lining them up again?  Be sure to leave a space between each word!
    •    Point out punctuation.  You can find periods and question marks in your child's books, or in other books, newspapers, magazines, online stories around the house.  Children will experience what these marks mean as you read with them. 

    Happy reading, Paula

  • 08 Apr 2016 11:49 AM | Anonymous member (Administrator)

    Q: My child is having some attention issues in the classroom, how can I tell if this could be related to vision?

    A: Alex Andrich, OD, FCOVD, The Vision Development Team

    Inattention, distractibility and problems focusing on schoolwork have become significant challenges for parents, teachers and students.  Underdeveloped vision skills are often at the root of attention issues.  There are over 23 vision skills needed for success in the classroom.  Children who have deficits in these fundamental skills have trouble with concentration, focusing, and comprehension.  Undetected vision problems like Convergence Insufficiency, inefficient eye movements, and deficiencies in eye teaming cause fatigue, frustration and confusion.  Sometimes children report that they don’t feel well or have headaches.  Often children with vision skill deficits have low self-esteem and anxiety related to school.

    80% of learning in the classroom comes through the visual system.  Children with eye teaming problems or visual processing problems can be highly distractible, finding it difficult to concentrate and remain on task when the strain on their eyes is so great.  In fact, many of these children are often misdiagnosed with Attention Deficit Disorders, Learning Disabilities, or Dyslexia.

    The American Optometric Association (AOA) estimates that 1 out of 4 children have a vision problem that interferes with learning.  Children don’t always know they have a vision skill deficit.  The AOA states that all school aged children should have a comprehensive eye exam with an eye doctor once a year.  While vision screenings with the school nurse or pediatrician are important, they are not a substitute for a comprehensive eye exam with an eye doctor.

    Children with academic challenges should have a specialized Sensorimotor Vision Examination to uncover hidden vision skill deficits.  A developmental optometrist goes beyond checking for 20/20 eyesight and will evaluate visual skills needed for optimal functioning in life.  The doctor may prescribe stress reducing glasses or an individualized program of Vision Therapy to help develop eye muscle coordination, depth perception, and visual processing skills necessary for success in school.

    Click on the following for a Symptom Checklist Survey.

    For further information, please visit our website:
    www.sensoryfocus.com


  • 08 Apr 2016 11:42 AM | Anonymous member (Administrator)
    Name: Laura has three children.


    Do you work outside the home?

    I work part time for my sister-in-law's business, Artists Uncork'd.  Artists Uncork'd is a company that teaches people to paint while in a social setting. I am a background person who helps run the events smoothly.  I also help organize the art studio.

    What do you do to relax?
    Read, watch TV and exercise.  I try to swim half of a mile once or twice a week.
    What else would you like to tell us about yourself?     I am mostly a stay-at-home mom. I only work about 5 hours a week. My children are ages 5, 8 & 9. My husband and I have been married for almost 11 years. 

    What benefits has Connecting for Kids brought to you and your family?
    The biggest benefit is that they directed us to a Bible Study at Christ Evangelical Lutheran Church. The friendships we have formed at this bible study have been priceless. We are so thankful for that. 

    What I worry about the most...
    I worry the most about my son making friends. It would make me so happy if he could have play dates the way my other children do.  He is in a social group through ABA Outreach Services.  I know the skills he is learning there will help him now and in the future.

    The area where I have grown the most...
    I have learned to better handle my emotions. Before I use to worry and get upset about the tiniest detail. I think because I have had so much stuff thrown on my plate I have learned to not let the little things bother me so much.

    I get embarrassed when...
    I get embarrassed when my son (who is on the autism spectrum) throws a tantrum when we are out in public. I can just feel all the strangers staring at me and judging my parenting. It makes me frustrated because I feel like I am being scrutinized even though no else knows the circumstances of my family.

    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 really liked the Book: "What Color is Monday?" by Carrie Cariello. It explains how a normal family deals with autism. I also love the Book, "Wonder." by R. J. Palacio. I think it should be in every house with a special needs individual. It is great book about accepting everyone just how they are.

    Is there anything else about your journey that you would like to share with other parents?
    Just to remind them that they are not alone. I know how lonely it can feel at times.  Just to remember that there is always someone who can relate to what they are going through.


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  • 10 Mar 2016 2:55 PM | Anonymous member (Administrator)

    If you would you like to be featured in an upcoming column, please fill out the online form

    Name: Stephanie is the mom of three children.

    Do you work outside the home? If so, what do you do?

    My most important job is that of a stay-at-home parent. I am the parent representative and chairperson for special needs of my school district. My husband and I lead a special needs family support group through our church as well. I also am an independent ambassador with Plexus Worldwide.

    What do you do to relax?

    I don't know what that means. I have never been good at that! I like doing impossible jigsaw puzzles. I also enjoy writing and my book about my son was just published worldwide, "Looking back and Laughing: Our Journey through Autism

    What else would you like to tell us about yourself?

    I have always loved helping people and feel like I have finally found my purpose through my son’s autism. It opened up our eyes and hearts to families that we never would have even known before. I live my life with purpose and try to help whomever I can every single day.

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

    My son has loved the special programs offered, especially Music Therapy & MoreSM. Sarah Rintamaki has always been there for me with encouraging and helpful advice. I enjoy getting to see new faces and sharing my knowledge, resources, and support to anyone that may need it!

    Which have been your favorite Connecting for Kids resources?

    I enjoy the educational classes and training, I will never stop learning and always pass on the information and suggest other parents educate themselves as well.

    The bad habit I picked up...

    Because my son is considered non-verbal, we needed to learn how to prompt him for almost everything. It was hard to not say things for him, but to prompt him to talk. It took so long to learn how to prompt but we finally did. Our struggle now is learning how NOT to prompt as I feel it holds him back sometimes from communicating independently. I feel like I prompt everyone when I talk now.

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

    This is not the end, just a brand new bright beginning. You will be challenged, tested, exhausted, confused, stressed, lonely, and overwhelmed at times. But, it will all be worth it. You will learn new things, find a new way to love, a new way to parent and your heart will grow ten times what you thought was possible. Don't give up. Learn as much as you can. Do whatever it takes. Remember that you are your child's voice and their biggest support. Love hard, laugh often, and look ahead to an amazing future full of endless possibilities. Have faith, stand strong, and give him what every child needs, love.

    My greatest lesson learned was…

    To throw out the window what I thought being a parent looked like. With three children all needing different things from me, what came natural and easy wasn't necessarily what is best for them. Birthday parties look different for my son. Family vacations aren't what I see on the TV. Playdates, having date nights, being spontaneous, all these things are unrealistic. I learned to expect the unexpected, and go with the flow. Life is what you make it, not always what you hope for. Make yours special in what feels right and don't look at other people's lives and feel like yours isn't just as amazing and wonderful. Different, not less.

    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.

    "Looking back and Laughing: Our Journey through Autism" is a book I wrote which looks at life through the eyes of a parent with a child on the autism spectrum. It is available on Amazon. You can find me on Facebook at "Autism Mom on a Mission" 

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

    I have extensive research and knowledge of the connection between the gut and the brain and digestive health concerning our autistic and ADHD kiddos. My children are all on medications and plant-based supplements that have truly changed our lives forever. I am speaking with hospitals locally right now and plan on offering workshops about gut health and special needs. Anyone can contact me at any time and I would be happy to add them to my group of families all working to achieve similar results, or share my research and results.

     

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  • 10 Mar 2016 2:44 PM | Anonymous member (Administrator)


    Q: My daughter is having problems getting along with the girls in her class.  I'm afraid that she is behind in her social skills.  What are some ways we can help her gain the necessary social skills to better deal with peer situations as they arise?

    A: Dr. Cara Marker Daily, Pediatric Psychologist, Daily Behavioral Health

    In today’s world, many children have difficulty “fitting in” with others.  If you feel she is behind in her social skills, it may be beneficial to have her evaluated by someone, such as a psychologist or speech/language pathologist, who can assess her social communication skills.  Some red flags may include difficulty with:
    •    sharing interests with others
    •    making and keeping friends
    •    understanding feelings
    •    initiating and maintaining conversations
    •    understanding facial expressions and gestures

    Regardless, there are some social skills that all children need to learn, which are important to function in daily life.  These skills include:
    •    listening to others
    •    following steps in directions
    •    following rules
    •    ignoring distractions
    •    asking for help
    •    taking turning in talking
    •    getting along with others
    •    staying calm when upset
    •    accepting responsibility for your behavior
    •    doing nice things for others

    Teaching social skills can be done through various ways.  The best place to teach social skills is at home just by modeling.  Try showing your child that you take the time to listen and are nice to others, that you stay calm when you are upset, that you take responsibility for mistakes, and that you ask for help when you need it.  I often find myself telling parents that the most important thing is for us to teach our kids to love others, which starts at home.  Social skills, not academics, are what will help individuals succeed in today’s world. 

    When teaching social skills, it is also helpful to normalize to your child that interacting with others can be difficult and may even cause anxiety.  Let them know that most people get nervous or have difficulty with something in their life.  Afterward, give your child examples of social situations that may be difficult and then role-play those situations with her.  Next, have her practice those skills in her natural environment with siblings, peers, and in her classroom.

    Other helpful techniques include the use of Social Stories ™, which can be found on the web at carolgraysocialstories.com. Also, using age-appropriate bibliotherapy books (e.g., how to make friends) are helpful, which you can find at the library.  If these types of approaches are not working, then find a local social skills group, where your child can learn social skills with the help of a professional.

  • 05 Feb 2016 12:47 PM | Anonymous member (Administrator)

    If you would like to be featured in an upcoming column, please fill out the online form.

    Name: Chris has 2 children.

    Do you work outside the home? If so, what do you do?
    I work for an auditing firm.

    What do you do to relax?
    Play drums, watch Netflix, hang out with my wife!

    What benefits has Connecting for Kids brought to you and your family?
    Connecting for Kids has brought a lot of benefits including social networking opportunities on Facebook, the ability to have people who have already navigated this difficult path to mentor and help you, feedback on beneficial services and just companionship.

    Which have been your favorite Connecting for Kids resources?
    The Facebook Chat Group and the CFK Dad get together.

    What I worry about most...
    How will my son function in his 20s when my wife and I are older.

    How parenting a child who struggles has changed my ideas on parenting...
    There is no one size fits all. It has changed my ideas on actual life itself. I look at everything from a different perspective. It puts the trivial things "normal" families worry about in perspective and helps you to really focus on the small, wonderful accomplishments that matter most. Sometimes not being caught up in the "rat race" of having the smartest or best athlete for a child, you can just enjoy and love them for all that they will be and everything that they are.

    The hardest thing for me to learn was...
    What makes sense to me doesn't necessarily make sense to my son. His view of the world, I would imagine, is much different.  He is almost four and has essentially no expressive language, so for me it is difficult to view the world as he does.


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