Category Archives: special needs

Understanding the Grieving Process for Parents of Special Needs Children

By: Sharon Pike & Cara Long, Parent Liaisons

It’s graduation season! We love seeing and hearing about the accomplishments of each graduate and their hard work! But for some parents, seeing their child’s peers reach graduation or other milestones, can trigger many emotions, especially if their child has a developmental delay or disability. For some children, these milestones will come much later or maybe not at all.  We hope to give you a greater understanding of the process families experience in coming to terms with a child with a developmental delay or disability. We speak from experience as we each have a beautiful young woman with a disability.

Sharon & Alison 2.jpgFirst, after the birth of a child with special needs, the diagnosis or incident that changes their child, parents will grieve the loss of the “perfect baby”, they’ve dreamed about. They grieve the dream, not the child.

Dr. Ken Moses is a psychologist who has devoted himself to helping people deal with crisis, trauma and loss. He describes it beautifully and accurately, “Parents generate core level dreams for their children even before the child is born.  Disability shatters those dreams. Grieving is the process where by parents separate from those shattered dreams and begin creating new dreams.”

He also says “few would argue that facing the devastating and continuing loss of having a child with a disability is among the most painful experiences that a person can confront. To separate from a lost dream, one must experience and share denial, anxiety, fear, guilt, depression and anger in whatever order or manner the feelings surface.” You can read more in The Impact of Childhood Disability: The Parent’s Struggle.

20110926 EasterSealsFashions (65 of 98)
Photo from Rich Howe

We recognize that for many parents this is their first experience with a disability and it unfortunately takes time to gain the insight needed. We want to help you work through the states of grief Dr. Moses mentions, so you aren’t stuck in a certain stage and can see the great potential in your child. This potential might be different than you imagined, but is still a wonderful journey.

We agree with Dr. Moses that the process takes time and honestly never really ends.  We learn to reshape our dreams with the help of the professionals we surround ourselves with. But grieving is the only way we can move on.  The parents who resist this process, become worse not better in response to the loss of the dream.

Below are Dr. Moses states of grief that you may be familiar with but need to recognize and move through them on this journey:

shockDenial/Shock

  • This stage gives parents the chance to “feel it” and start to find support and ways to navigate this new world they’ve been dropped into.
  • It buys time needed to blunt the initial impact, to discover inner strengths, find resources.

Anxiety

  • With the loss of a dream, parents are forced to change
  • Anxiety mobilizes the energy needed to make these changes

Fear

  • This stage speak to itself! The questions come “Will he walk, Will she talk,” “Will he go to college or marry?”

Depression

  • This stage is one that parents can feel repeatedly over the years and it’s depths can be simple sadness to deep, long lasting depression that needs medical intervention.

anger

Pain/Guilt

  • This stage also gives parents the chance to “feel it” to “question it” and ask themselves “What did I do to cause it?” “Why did my body fail?”

Anger

  • This stage parent ask,”Why me, why not you?”
  • A parent’s sense of justice is challenged
  • Their anger is often directed at someone or something (child, medical professional, or spouse)

Acknowledgement and Hope

  • Parents have come to grips with the fact, this is life and with modifications they can still live the dreams they had for their child and family.
  • They learn that there is always Hope.

This journey is reflected in this poem from a parent of a child with autism.

What You Should Know About My Child
by Brian Rubin 

Remember that he is, first of all, my child.
Let me see him smiling in his sleep.
And let me think how handsome he is.
Help me not lose sight of my son
In the sight of his limitations.

I know that you care for my child,
And that you work hard with him.
I need your expertise to help him become All that he is capable of being.
You need my help in understanding who he really is.
And in the following through at home
With things that are important.

Remember though, that you send him home at night,
And have weekends off and paid vacations.
Let me have the luxury of having a vacation…
Sometimes physically, sometimes emotionally.
For  a day… a week… a month..
Without your judging me.
I will be there for him when you are long gone.

I love my child with an intensity that
You can only imagine.
If on a given day, I am tired or cross with him,
Listen to me.
Lighten my burden.
Do not judge me.

Celebrate with me.
Rejoice in who he is and who he will become.
But forgive me if, from time to time,
I shed a tear…
For who he might have been.

renee

This journey is hard and can be isolating, especially for parents of babies with challenges.  But you are not alone. We are here to support families through this process. We can be your sounding board and help find whatever resources you need. To learn more about our family services, click here.

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Back to School…. Yay or Nay?

By: Sharon Pike, Parent Liaison

As the first day of school is fast approaching I am hearing two camps of parents.  The ones that are counting the days till the bus comes with the routine of school that brings a sense of normalcy and structure to their homes.  The other camp, is the one that are holding onto summer with all their might, dreading the routine and busyness that the school year promises.

Marita Blanken_4 cropped MG_9142BWhichever camp you’re in, know you’re not alone! Either way it’s time to shift gears and focus your energy on getting everyone ready for earlier bedtimes and wake ups, school lunches and getting out the door in time to catch the bus.

By now you’ve learned who your new teachers are so the kids know it’s coming. No one wants to send their child off to school frazzled so I recommend getting as organized as possible.
How to prepare your child

  • Move bedtime back and set alarms for earlier wake ups.
  • Start having the kids pick out their outfits the night before so everything is together in one spot for quick dressing.  If a schedule in your child’s room helps, make one that outlines the morning routine.
  • Have them help make lunch the night before so it’s all ready to go in the morning.

Preparations with the school before the first day

  • Review your child’s IEP especially the accommodations page so you can go to school and ask that things are in place before the first day of school. You don’t want to wait for the sensory diet items or special chairs to be available weeks later.
  • If your child has medical issues and things changed over the summer, ask to schedule with the school nurse to review any changes.
  • cammy can.pngCreate a one page at a glance about your child in a nut shell.  So, everyone from the principal, school secretary, janitor and lunch ladies understands your child’s unique needs and abilities.

Then hang on, as the first couple of weeks might be difficult. While there may be a few bumps to work out, before you know it will be October  and a nice routine will be established.

For help with your child’s IEP or other back to school assistance, contact our parent liaisons and visit our web resources at: http://www.easterseals.com/dfv/explore-resources/for-caregivers/iep-help.html 

Another great resource for back to school tips is from the American Academy of Pediatrics.

 

 

 

Why Medicaid Cuts Matter

By: Theresa Forthofer, CEO & President

The new healthcare legislation, Better Care Reconciliation Act, is everywhere in the news. With our current political climate, you may want to just ignore it and turn off the TV.

Please don’t ignore the impact this legislation will have on you or someone close to you.

Currently 60 percent of children and adults with disabilities use Medicaid. It also pays for nearly half of all births in the United States and 40 percent of children are covered through Medicaid. This bill would cause each state to have to find more money to decrease the gap from these federal cuts. Without a budget in Illinois, we can take a guess on how the state will make up this difference. Under the proposed Senate bill, the Congressional Budget Office estimates that 22 million people would lose coverage by 2026.

Medicaid

ryan and justinThis will greatly impact you or a friend or neighbor. It impacts my family, as my adult sons, Ryan and Justin have Myotonic Muscular Dystrophy and Autism and receive Medicaid funded home-based services. These services have helped my family immensely and have become vital for us, and I know they are vital for many of the families we serve at Easter Seals DuPage & Fox Valley.  Supporting children in their early years will save the system significantly more as they age.  The expense is far less than having to provide life-long care outside the home.

This proposed bill is making health care more expensive to those who need it most – like low-income families and people with disabilities.

Help your child or other children and adults with disabilities. I urge you to tell Congress #NoCutsNoCaps on #Medicaid. It is easy to do by following these steps on this link. 

  • call-script-for-medicaid.pngSearch for a Senator
  • Call the number listed by their name and ask for the relevant health legislative assistant.
  • Use the provided call script to guide your conversation.
  • Optional: Refer to additional talking points provided here
  • Share this page and image on Facebook to spread the word

 

#GivingTuesday

Today is Giving Tuesday, the global day of giving. This international movement started in 2012 to channel the generous spirit of the holiday season and inspire action around charitable giving.

abbey

Watch Abbey’s video on how she gained independence through the therapies she received at Easter Seals DuPage & Fox Valley. She is now a sophomore at Yale University and is helping clients like Clover achieve independence too.

Today, thanks to three generous individuals, the first $7,000 raised will be matched 1:1!  This means your gift can make double the impact!

Your involvement on this global day of giving will impact all the life-changing services and programs at Easter Seals which help children with special needs develop brighter futures.

Join in and make your gift today at https://www.firstgiving.com/EasterSealsDFVR/giving/.

Down Syndrome Enters a New Era

By: Dr. Peter Smith, Associate Professor of Pediatrics, University of Chicago

Editor’s Note: Through a partnership with the University of Chicago, developmental- behavioral pediatrician, Dr. Smith leads a new Neurodevelopmental Disability Clinic at Easter Seals DuPage & Fox Valley which provides support for children with Down Syndrome, ADHD or Autism, disabilities that may include complex medical and emotional issues.

Dr. Smith also leads Easter Seals DuPage & Fox Valley’s multi-disciplinary team including an occupational therapist, speech-language pathologist, developmental therapist, audiologist and parent liaison in the Medical Diagnostic Clinic. This clinic specializes in early diagnosis of young children.

Current Processes Are Not Working

Individuals with Down syndrome (DS) are living longer and healthier lives than ever.  There is consensus that complete information needs to be offered to all parents of children with Down syndrome (both pre- and postnatal) regarding the current experiences, health outcomes, lifespans, and quality of life for individuals with DS.  DS represents a dramatic “success story” and the lives of individuals with Down syndrome are improving in every way measurable.  Unfortunately, this good news is too often not being shared with new and expectant families.  Doctors are not prepared for this task and parents report frustration with the process.

Maggie_1.jpgOn the Cusp of Potentially “Game Changing” Therapies

In addition to the dramatic changes that have already occurred, DS as a clinical and research arena is on the cusp of developing even newer therapies that have the potential to improve cognitive outcomes.  Multiple research teams have protocols already enrolling study subjects.  For example, the team at the Jerome Lejeune Institute in Paris has an active study underway  that employs a combination of folic acid and thyroid hormone, targeting infants and primarily measuring cognitive performance during and after therapy.  Their preliminary work has shown significant promise and preliminary results might be released later this year.  Because of their early successes, there are ongoing efforts to mount a similar study here in the United States.  The NIH has recognized this new era and has launched an international registry (see https://dsconnect.nih.gov ).  However, this “breaking news” has not been widely disseminated.  Many worry that recruitment to these studies could be diminished due to the lack of awareness by primary care providers and the general public, which would slow the progress of the studies.

01_Lucas_Vasquez.jpgA Growing Number of States Have Addressed the Issue: Including Illinois

Because of the lack of general knowledge of both the dramatic improvements in the lives of individuals with DS and the emerging clinical trials in DS, a coalition lead (of course) by family support organizations has emerged.  They have initiated a new “information rights” movement that includes clinicians, policymakers, legislators, and researchers that has worked to enact new state laws addressing the problem of misinformation.  The first to successfully pass legislation was Massachusetts: in 2012, a coalition helped to pass a state law, mandating that clinicians provide accurate information and Referral to parent support organizations.  Most recently, Illinois, passed unanimous legislation in 2015, which proves that this is truly a bipartisan issue.

To learn more about our specialty clinics including the Medical Diagnostic Clinic, visit eastersealsdfvr.org.

Knowledge is Key

By: Amy Liss, Relationship Coordinator

Every month we seem to have a day that brings awareness to a specific disability. For example Friday, March 25, is National Cerebral Palsy Awareness Day encouraging people with cerebral palsy to share the many things they enjoy and can do using the hashtag #CerebralPalsyCan.

11182119_10104980955721620_7285392519176070049_nWhile I think these days are great, I personally believe that every day should be Awareness Day. My dream had always been to be an elementary school teacher. Although I may not be teaching in a classroom, my goal is to “teach” every day. Whether I’m giving a speech in the community, giving a tour of our building to someone that hasn’t heard of Easter Seals and its mission, driving up and down our hallways meeting new families, or engaging in conversation with long-time friends, I feel that I am always trying to educate.

For those of you reading this that may not know me, I’m 33 years old and have Spastic Quadriplegic Cerebral Palsy. There are many different types of Cerebral Palsy. I am lucky to be able to speak and have a mind that works pretty well most of the time. 🙂

Next time you come in contact with a person with a disability, here are 5 things I believe you should keep in mind:

  1. Just because a person is nonverbal doesn’t mean they don’t understand what you are saying. Treat them normally. Talk to them at a level they understand. Do not talk down to them.
  2. Most people with a severe disability need a companion to help them. It is important that you remember to talk to the person and not to their companion. For example, people tend to ask my companion questions instead of directing them towards me. They say “does she like college basketball?” If the question was formed, “do you like college basketball?”I could talk for hours about March Madness.
  3. I’mMarchMadness.jpg an identical twin and I have a younger sister who is 28. My family did a wonderful job of including me in all family activities. Throughout my life, I’m grateful that I’ve always been accepted and included. Sometimes your special needs child can occupy a lot of your time and that is understandable but it is important to remember that siblings need attention too. Try to spend one-on-one time with each sibling. In my family, we call these “you & me kid days.”
  4. Patience is crucial. Sometimes others don’t take the time to get to know people with disabilities because it may take them longer to do things. If you take the time to get to know someone with a disability and include them in your group, you may quickly notice that we’re more alike than different.
  5. Be as open as possible. Tell others about you or your child’s disability. That’s how we educate.

amy group.JPGYou may be surprised at how much YOU can teach!

Amy works as the Relationship Coordinator at Easter Seals DuPage & Fox Valley. Learn more here: http://eastersealsdfvr.org/about.