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!

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  • 03 Apr 2017 1:42 PM | Anonymous member (Administrator)

    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.

  • 30 Mar 2017 11:43 AM | Anonymous member (Administrator)

    "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.

  • 07 Mar 2017 1:53 PM | Anonymous member (Administrator)

    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.

  • 03 Mar 2017 2:56 PM | Anonymous member (Administrator)

    “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.

    Save Save
  • 06 Feb 2017 2:54 PM | Anonymous member (Administrator)

    “My child is so anxious when it comes to school, sports and new social situations, what are some techniques we can use to reduce the worrying?”

    by Susanne Sacco, LISW, MEd., Antone F. Feo, Ph.D. & Associates, Inc.

    Are you a parent of an anxious child or teen?  You are not alone.  Fortunately, there are several techniques and coping skills you can use to help your child successfully enter anxiety producing situations instead of avoiding them.  Each experience will build confidence and lessen the likelihood of long term anxiety and depression.

    First, let your child know that everyone feels nervous sometimes and maybe even share an experience from when you were a child and felt anxious.  Next, help your child talk about what the upcoming event will be like.  While talking with them, remain positive and bring up some possible scenarios that could be unknowingly making them afraid (getting sick at school, not having a friend) and define for them how those issues are resolved, “If you feel sick at school and tell the teacher they will always know how to call me and we can figure out what to do.”  Depending on your child’s age, he or she may want to draw a picture of the upcoming situation, read a book about it, and/or meet a friend that will be at the same event or who has gone through the given situation.  You may want to let the adults that will be involved in the given situation know about your child’s fears.  These adults can then pay special attention to your child’s reactions and likely make your child more comfortable without making him or her feel called out.  Being the center of attention can sometimes increase anxiety. 

    Finally, build in some “celebration” for your child when they conquer their anxieties and attend or follow through with something that has caused them anxiety.  For example, tell your child that you know starting basketball is making them nervous and that you would like to celebrate with them after they follow through by going for ice cream, going to the park, or another activity of their choice.  During this time, you would want to talk about what feelings they had during the activity and how they feel afterward.

    If your child is not sleeping, crying excessively, complaining of physical aches and pains, failing school, being isolated with failure to join in and make friends, and/or refusing to go to school the anxiety may be excessive and your child may need professional help.  Find a therapist that works with anxiety in children. Make sure that your child connects positively with the therapist.  Sometimes you have to try a few different therapists to get that connection but it is essential to successful therapy.

  • 06 Feb 2017 2:40 PM | Anonymous member (Administrator)

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

    Nicole is a mom of three.

    Do you work outside the home? If so, what do you do?
    Part- time children's librarian

    What do you do to relax?
    Drink wine, knit, drink more wine

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

    Parent connectivity, a safety net in which to vent, share, find inspiration

    Which have been your favorite Connecting for Kids resources?
    Coffee and Chat, Teach Me to Play

    The best thing about parenting a child who struggles is...
    The best thing so far is the circle of kindness and empathy that has grown as a result of our son's condition. We set out on our parenting journey looking for a new purpose, for a challenge and a change to the insular way we had been living in NY. Our son's birth solidified that our parenting journey would be as challenging as they come. We have become the "I don't know how they do it" class of parents. If it were a sport, we would be medal contending in Balancing Medications, division champs in Hospital Stays, and at least competitive in Adjusting Childhood Expectations. Our son began having seizures and was diagnosed with a rare condition, Cortical Dysplasia, at 5 months. As we later discovered, it also comes with a slew of other issues such as Autism, poor memory, cognitive delay, poor motor function, and vision problems. I'm not the sort of person who thinks that I was destined to become a parent of a special needs child. I don't think someone up there is doling out challenging children to those most in need of personal growth. But he has changed us as people to the core. Our son is growing our best possible selves wherever he goes. He is grooming siblings who will become empathetic adults in the world, cousins who might grow up to develop cures to diseases, grandparents with a new found capacity for learning and patience. He may not grow up to be all that we hoped for in a child, but he has grown fierce warrior- parents who will champion empathy and acceptance on his behalf.

    What I worry about most…
    I worry most about who my child will be. Most parents have a set of given expectations for a child -- that they will make friends, go to school, fall in love, get a job. Nothing is clear with a special needs child, no future assured. Will he live with us forever? Who will take care of him? Will he always be like this? I wish I could see his future, assure myself now -- but a hard lesson in this kind of parenting is that it is a slow road with no quick or easy answers. Not unlike the worries of many parents, just with a few added uncertainties.

    The bad habit I picked up...
    Way too much swearing and wine drinking. Boy do my kids have a colorful vernacular. And we buy wine by the box.

    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.
    Uniquely Human: A Different Way of Seeing Autism by Barry Prizant was a great new way of looking at and accepting our son's ways of self regulation.

    Is there anything else about your journey that you would like to share with other parents?
    It gets better. Then worse, But then better again.

    Save Save Save
  • 27 Dec 2016 10:54 AM | Anonymous member (Administrator)

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

    Deidera is a mom of four.
    Do you work outside the home? If so, what do you do?
    I do not work outside the home currently but in January I will be a full-time nursing student.
    What do you do to relax?
    Relax? What is this relax you speak of? Ha ha!
    What else would you like to tell us about yourself?
    Life is hard and often lonely. I second guess every parenting decision I make from meds to education to setting boundaries. All I want is for my children to have every opportunity that every other child has.
    What benefits has Connecting for Kids brought to you and your family?
    An immeasurable amount of emotional and informational support. Everything from doctors to specialists to educational and parenting questions can be found through CFK!
    Which have been your favorite Connecting for Kids resources?
    Sarah Rintamaki and Karla Fitch are invaluable information resources. The other parents are my life line to compassion, sanity and laughs. We are all in this parenting journey together and that is a huge source of comfort.
    How parenting a child who struggles has changed my ideas on parenting...
    We're all just doing the best we can every day and we all could use a little more compassion in our day.
    The best thing about parenting a child who struggles is...

    You learn a new appreciation for what hard means. My life is trivial in comparison to what my children endure on a daily basis just to try and fit in and keep their heads above water. It's taught me to let the little stuff go and focus on what matters most. Having extra needs kids has taught me to let go of convention and embrace the chaos, to live in their world and to accept that our future is not the one I envisioned when we brought them home, but it still has so much possibility. Lastly, it taught me to stop worrying what others think.....they don't walk this road, their opinion is not important.
    The worst thing about parenting a child who struggles is...
    Always feeling like you could or should be doing more for your children. Always feeling like you are being judged for your children's behavior. Always feeling guilty that your children struggle and wondering secretly if it is your fault. Always missing out on get togethers with friends because your kids need so much of your attention. Worrying that your typical kids will be resentful of all that their siblings needed. Feeling guilty for secretly wanting a little more "me" time. Worrying that you aren't doing enough to nurture your marriage and occasionally giving in to the haunting thoughts of why he sticks around. Perhaps the worst part is realizing those who you love the most just won't ever REALLY get it, either because they don't understand a reality they don't live....or because it's too much for them. Too much chaos and too much effort.
    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.
    Anything in the CFK arsenal, Scary Mommy blog/site, Special Books by Special Kids (Chris Ullmer is an angel), and Understood.org.
    I will put the links below in the newsletter; please let me know if I am referencing the right sources:
    Special Books, Understood, and Scary Mommy.

    Is there anything else about your journey that you would like to share with other parents?
    It gets better. Every day doesn't suck. Reaching out and raising my voice for support was paramount. Develop a great working relationship with your children’s school. Cut yourself some slack. And finally, take time for yourself and your partner, who will be there (God willing) long after the struggle is less.

  • 02 Dec 2016 10:40 AM | Anonymous member (Administrator)

    Rachele is the mother of one child.

    Do you work outside the home? If so, what do you do?
    I am a stay at home mom.

    What do you do to relax?
    I spend time with my family.

    What has been your favorite Connecting for Kids resources?
    Music Therapy & More

    What benefits has it brought to you and your family?
    It's helped our son discover an interest in instruments and music.

    If I could go back in time and talk to myself the day we got the diagnosis I would say...
    Breathe. Take one day at a time. There will be bad days but there will be great days too. You will feel overwhelmed a lot but, believe it or not, you will get through it.

    The hardest thing for me to learn was...
    Be patient. There will be progress. It will be at his own pace, but progress will be made.

    The worst thing about parenting a child who struggles is...
    The worry. All parents worry about their child but it's magnified. It can be all consuming at times.

    We'd love to know if you have any go-to resources.
    Talking to other parents. Finding out what was helpful to them and what their child benefited from and enjoyed.

    Save Save
  • 02 Dec 2016 10:26 AM | Anonymous member (Administrator)

    Q:"What types of fine and/or gross motor activities can I do with my child prior to attending a holiday get together that would settle him or her down and make a meltdown less likely?

    A: Sarah Durham, OTR/L, Occupational Therapist, Children's Developmental Center in Amherst
    Sarah is also the mom of three, one with cerebral palsy


    The holidays are upon us, but for some, the holidays are not always “happy”.  For many children, the holiday bustle, the lights, sounds, outings, and gatherings are too much.  Children who experience sensory processing and modulation disorder are especially affected this time of year.  Some have difficulty transitioning to new clothing, more layers, and different textures, while others are extremely overstimulated by the lights, movement, and noise at gatherings. Routines that are different, and out of their control may cause some confusion and anxiety.

    How do you help your child get through these overstimulating sensory experiences?

    - First of all, know your child.  Look for signs of overstimulation, but be proactive with breaks. Move to a different room, or take a walk to avoid overstimulation. 

    - Bring a favorite activity to play with to direct their attention from the lights and sounds. 

    - Use a schedule (visual/verbal) to prepare them for the structure and expectations of the day.

    - Prep children who become very anxious with social stories or videos, such as seeing Santa, looking at holiday lights, opening presents, etc. If possible, allow for some quiet time before leaving the house and after the event to decompress. 

    - Pick up some noise cancelling earbuds/headphones, or provide music, to limit unwanted auditory stimulation. 

    - Carry a chew stick (rubber tubes, chewy necklace) or chewy candy, to provide deep calming pressure to the mouth and jaw.

    - Have a table for your child slightly away from the big crowd at mealtimes. 

    - Heavy work activities such as deep body squeezes (massage, hugs, exercise ball), are beneficial prior to, during and after the event. Depending on your child’s needs, use a heavy blanket, jumping, log rolls, army crawl, bear crawls, wall push-ups, pushing/pulling something heavy, and/or carry objects up/down stairs. 

    Cherish these moments and have a wonderful holiday season!

  • 30 Sep 2016 2:48 PM | Anonymous member (Administrator)
    For our Faces of CFK column, we usually profile a parent of a child who struggles.  This month, we are highlighting one of our CFK grandparents, Julie Heber.

    Do you work outside the home? If so, what do you do?
    I am a Global Operations Manager for IBM Corp and have worked for the company for 37 years.

    What do you do to relax?
    Bake, make jewelry, read or exercise

    What else would you like to tell us about yourself?
    We celebrated 38 years of marriage this past July! We have traveled to over 30 countries doing missions work. I am a grandma to 3 amazing boys!

    What benefits has Connecting for Kids brought to you and your family?
    CFK has provided a wealth of information on autism and sensory issues. I have been able to share what I learned with my daughter and it has opened up how I respond with my nonverbal, autistic grandson. We have learned how to play and how to take family outings being mindful of situations that would make him uncomfortable. I am sharing what I learn with anyone who will listen! I'm committed to being an advocate for him and other families with special needs.

    Which have been your favorite Connecting for Kids resources?
    Coffee and Chat sessions are amazing. A wealth of information is always provided.

    My greatest lesson learned was...
    I learned that although Simon is nonverbal and autistic, he is very smart, understands and does respond. I just had to take the time to see and hear the world from his perspective. We are using American Sign Language (ASL) and Applied Behavior Analysis (ABA) as a family and I'm thrilled at not only his progress but also the delight he expresses when he is with me. I truly learned that I can have a wonderful relationship with him as I do his older brothers.

    The area where I have grown the most...
    I have more compassion and understanding now of the challenges that families with special needs face. I look for ways to help not only my daughter but other families. At times that may be just to provide a shoulder to cry on, a listening ear, a meal, baked goodies or providing an evening out. I am always amazed at how much I learn and the love I receive from these special kids.

    What I worry about most…
    I worry about my daughter and her husband. They live this 24/7 and there are times it is stressful along with financially challenging. I also worry about my two neurotypical grandsons. They are super supportive of their little brother but often express concerns and fears about his future.

    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 read and follow anything from Dr. Temple Grandin.
    Josiah's Fire by Tahni Cullen
    Succeeding through Autism by Sean Barron
    A Grandparents Guide to Autism from Autism Speaks
    Grandparent Autism Network

    Is there anything else about your journey that you would like to share with others?
    As a grandparent I would encourage other grandparents to learn as much as possible and to observe their grandchild and appreciate their amazing uniqueness. Connect with your grandchild at the child's level. Then support your son or daughter and their spouse. Be creative, provide date nights, meals, and always be ready to listen. Allow them to parent and respect them.

    Save Save Save
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