Monthly Archives: May 2018

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.

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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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5 Tips for Keeping Hearing Aids on Babies/Toddlers

By: Beth Rosales, Au.D, CCC-A.

hearing1

As both an audiologist and a mother of 2 young children who wear hearing aids, I definitely understand that keeping hearing aids on your child can be a very difficult task. Young children and babies seem to love to get their hands on those hearing aids and pull them right out of their ears! I often hear from parents of babies and toddlers that they have tried to keep the hearing aids on their child, but it seems impossible. As a result the child doesn’t wear the hearing aids regularly, which means he or she is not hearing very well most of the time, and this will likely delay oral speech and language development.

When 2 of my boys ended up needing hearing aids, I knew I had to do everything I could to keep their hearing aids on their ears when they were awake. Well, I can say from personal experience that the struggle is very real when it comes to keeping hearing aids on young babies and children, but utilizing some helpful tools and tips can make it a lot easier.

Tip #1 – Pilot hats

Baby nico on swingThis is best for babies up to 18 months old or so. I fell in love with pilot hats and here’s why you should too. Not only are they cute, but they will make your life so much easier!! For my boys, pilot hats worked better than anything else when they were very young. The pilot hats should be lightweight and ideally have mesh sides or very thin material that will not block the sound from entering the microphones of the hearing aids. It’s important to get a pilot hat that fits well. If it is too loose, then it will be too easy for your little one to get his hands under the hat.

Here are some great places to get pilot hats that work well with hearing aids:

  • LilNells: https://www.etsy.com/shop/LilNells  My personal favorite shop! The hats fit my sons very well, and she makes them with snap closures, as well as ties. I love the snap closure because they are harder for toddlers to undo (tie up closures can work too, but tie closures are easier for kids to play with and untie). The shop owner also has options with mesh sides available and unlined (thin) hats, both of which are good for hearing aids. She is great at making custom orders, so if you see a hat you like that doesn’t have mesh sides, send her a message to see if she can make it with mesh sides, or if you have an idea or color you’d like, just send her a message to see if it is possible. Hats cost about $15 – $18.
  • Anchor Your Hearing shop: etsy.com/shop/AnchorYourHearing. These hats come with mesh sides which are very breathable so there won’t be too much material covering the microphones of the hearing aids. You can email the owner of the shop through etsy with any questions about orders, sizes, etc. Hats cost about $15-$18.
  • Emmifaye shop: etsy.com/shop/emmifaye. Another etsy shop that sells pilot hats for hearing aids with mesh sides. Cost per hat is about $12.
  • Hanna Anderson hannaandersson.com. These hats are also an option ($14 for the Pilot Cap – not the “winter” pilot caps which are lined, but rather the regular pilot caps which are thinner, not lined, and less expensive than the winter hats).
  • Silkawear silkawear.com. Cost is about $28 per hat.

Tip #2 – Crochet type of Headbands

baby headbandIf pilot hats don’t work, but your child tolerates wearing headbands well, then consider trying crochet type of headbands (worn over the ear, somewhat like the mesh pilot hats). Some patients have found that tight fitting, crochet type of headbands are useful to hold the hearing aids on and these can sometimes be found at stores like Target or Walmart. They can also be found online at stores or on etsy.com.

Tip #3 – Toupee Tape

toupee tape.jpgHooray for toupee tape! Some children benefit from using toupee tape on the behind-the-ear part of the hearing aid. I use this on my 4-year-old son’s hearing aids when he has gymnastics class! It helps stop his hearing aids from flopping off his ears. This is basically like 2-sided tape that you can use on skin. You can cut the tape into a small square or rectangle to fit onto the hearing aid. Place the tape on the behind-the-ear hearing aid, and then tape it to the child’s head since it is meant for skin contact. Some people have found this helpful to use along with the hats or headbands. My 4-year-old no longer needs a pilot hat, so this is a nice solution for when he is doing sports activities. You likely need to replace the toupee tape daily or whenever you take the hearing aids off your child and then put them back on him. Toupee tape can be purchased at places like Sally’s Beauty Supply (local stores carry this). www.sallybeauty.com.

Tip #4 – Otoclips

octoclips.jpg

I love otoclips! Otoclips are helpful in preventing the loss of hearing aids when a child pulls them off. An otoclip is attached to the hearing aid and it has a cord and clip that is attached the child’s clothing so that if the child pulls the hearing aid off, it will be hanging from the cord attached to the clothing.

Here are some websites that sell otoclips:

  • Westone: www.westone.com. Search for “otoclip” and if your child wears one hearing aid, he will need “monaural” and if your child has 2 hearing aids, he will need “binaural”.
  • ADCO Hearing: http://www.adcohearing.com/. Website offers a very large variety of tools for hearing aids and hearing loss, including otoclips (under “hearing aid supplies”, “clips and loss protection”).
  • The Bebop Shop (etsy.com): https://www.etsy.com/shop/thebebopshop. Very cute otoclip options, as well as some matching hair clips.

For additional tips and resources, visit Hearinglikeme.com. 

Tip #5 – Positive attitude

Have a positive attitude about your child’s hearing aids! Young children pick up on how their parents feel about things. Remember, hearing aids are a very good thing. Hearing aids will help your child hear speech and other sounds that they otherwise would not detect. This will help your child develop oral speech and language skills. So if oral communication is what you want for your child, then hearing aids will help them move toward reaching this goal. Hearing aids are wonderful things!

For more information on hearing services for children or adults, visit eastersealsdfvr.org/hearing.