Tuesday’s Thoughts for 3/25/14

Tuesday’s Thoughts is an opportunity for you to share a great story about your child.  There are so many challenges on a daily basis but there are also great accomplishments.

If you have an inspirational story to share please click  “Contact” and write your story.  Each Tuesday I will select amazing stories to post.

Ten Things Every Child with Autism Wishes You Knew

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Autism spectrum disorder is a group of developmental disorders that can affect communication, social interaction and behavior.

Ten Things Every Child with Autism Wishes You Knew, written by award-winning author Ellen Notbohm gives the reader an opportunity to understand how many with autism struggle with daily challenges.

The author discusses ten ways that autism can affect a child which includes how the senses can affect behavior and how using the correct forms of language and communication are critical in reducing confusion and meltdowns.  The author encourages the parent to investigate their child’s behavior and discover the underlying cause instead of reacting to the behavior the child is demonstrating.

This book is not only a great resource for parents but also for friends and family to give them a better understanding of what a child with autism is experiencing.

I highly recommend Ten Things Every Child with Autism Wishes You Knew.  This book is a great tool for every parent that has received an autism diagnosis for their child or for those that would like a better understanding of the struggles one with autism experiences. For more information about the book or the author please visit www.ellennotbohm.com.

Make Sure You’re Taking Care of Yourself Too

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Image courtesy of marin / FreeDigitalPhotos.net

When a child is diagnosed with a disability many parents seem to go on a quest, a quest to find a cure.  There isn’t a lot of time to sit and worry about the future but a need to research and read as many books as possible to find the answers immediately.

Once the initial “cure” phase ends, a more realistic phase begins.  This phase emphasizes that, “OK, my child has a disability that cannot be cured what should I do now?”  There is a sense of acceptance and the “curing” idea goes away while the idea of having your child progress into an incredible, functional person steps in.

For many children with severe disabilities, the road ahead seems unattainable but there is so much technology available that even the most challenged can still achieve unbelievable goals.

Parents with special needs children don’t always get to drive their kids to soccer practice or dance recitals.  Instead they spend their time at therapy sessions and doctor appointments.    They spend their days redirecting their children with picture schedules and motivators.  Parents can get really stressed by the daily challenges and they need to consider their health both medically and emotionally.

I chose to see a therapist when my son was five years old.  I needed someone to talk to outside the home that had some experience working with disabled individuals.  It was such a blessing to be able to talk to someone even if I had to vent about the negative aspects of my life.  I was given compassion and suggestions which really helped.

The internet can also be a form of therapy.  There are many forums or blogs that you can join to communicate with other caregivers and learn how they cope with the daily challenges or have an opportunity to share experiences about your child.

Many times you feel isolated.  Family members and friends don’t completely understand your world.  Reach out and find help.  Even if you think you are handling things well, most likely you are still really stressed.  You need to stay strong for you and your child.

IEP: Friend or Foe?

Meeting RoomImage courtesy of Sura Nualpradid / FreeDigitalPhotos.net

Many families that have a special needs child will have to make the decision of whether their child should receive an Individualized Education Plan (IEP).  An IEP is a plan created specifically for your child with a set of goals.

The purpose of the plan is to try to reach the academic goals in a specific time period such as each quarter of the school year.  An IEP is a great way to assess your child’s academic progress when typical grading does not apply. However there are some issues with the IEP process.  The IEP is developed by a team which is made up of teachers, therapists, social workers, school psychologists and anyone that has been working with your child.  You as a parent are also a member of this team.  The goal is for all of the team members to sit down and discuss the IEP and determine the best route for your child.

Unfortunately many schools do not give the parent an opportunity to be a team member and the parent’s thoughts do not always coincide with the other team members.  This occurred in similar situation with my son. I had documentation from a physician and other private therapists that he was on the autism spectrum but the school would not accept his diagnosis.  The school psychologist stated he was not “autistic” but had obsessive compulsive disorder and oppositional deviant disorder.    My son’s doctors and therapists never mentioned either of those disorders and they used the school records to determine his autism spectrum disorder diagnosis.

The school team decided that the best place for my son would be a therapeutic school for the emotionally disturbed.  I would not accept that placement and I pulled him out of the school and homeschooled him for a year.  I decided to put a complaint against the school. The State Board of Education decided that the school did not allow our records to be considered when creating the IEP.  The school was required to do another evaluation and somehow after this evaluation my son was now diagnosed with autism spectrum disorder. Sometimes you need a little outside help to persuade the school to do the right thing.  My son is now in a therapeutic school for autism spectrum disorder which is exactly where he should be.

An IEP is very beneficial in documenting academic goals and progress.  It includes other necessities such as social work, speech therapy and occupational therapy.  I would recommend getting as much documentation on your child as possible such as physician and therapy reports.  Any documentation that you have outside of the school district can really benefit you if you need to make a case against the school.

Many schools do a great job during the IEP meeting and are very accommodating when it comes to children’s educational needs.  You just need to be prepared and make certain that your voice is heard and that you are a part of the team that decides your child’s education.

For more information on how I handled my son’s IEP, you can read more in my book, Hope Is Within Reach:  Overcoming the Challenges of Autism Spectrum Disorder.

Tuesday’s Thoughts for 3/11/14

Tuesday’s Thoughts is an opportunity for you to share a great story about your child.  There are so many challenges on a daily basis but there are also great accomplishments.

If you have an inspirational story to share please click  “Contact” and write your story.  Each Tuesday I will select amazing stories to post.

Film Review: Our Beautiful Secret

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Cerebral palsy is a condition that affects a person’s ability to move and maintain balance and posture.  Thirty years ago the Peavey family was told that their son would not live past his first birthday due to his severe disability.  Little did those physicians know that Jonathan Peavey would not only live but go on to participate in marathons and other races.

Our Beautiful Secret is a wonderful documentary created by Angela Peavey demonstrating how Jonathan beat the odds and inspired his family and others in the community with his special personality.

The documentary shares stories of the family’s challenges as well as interviews with community members who have been privileged to know Jonathan.

I would highly recommend Our Beautiful Secret for anyone interested in one family’s journey with cerebral palsy.  For more information on the documentary please visit www.ourbeautifulsecretmovie.com

*I received a free copy of the film to review. There was no compensation. The  opinions expressed are my own and not influenced in any way.

 

Loving Andrew: A Fifty-Two-Year Story of Down Syndrome

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Down Syndrome is a condition in which the person has an extra chromosome and can cause developmental delays and major medical problems.  Romy Wyllie was 26 years old when she had her son Andrew in 1959 and discovered that he had Down Syndrome.  In those days most women were told that their child had died when in fact they were sent to live in an institution.  This occurred to Romy Wyllie but her husband Pete refused to tell his wife that their son had died.  They chose to bring their son home.

Loving Andrew:  A Fifty-Two-Year Story of Down Syndrome is an incredible book written by his mother Romy Wyllie.  She tells of her son’s challenges and triumphs throughout his life.  She discusses her feelings of raising a child with Down Syndrome and shares how her son was at the forefront of improving the community’s attitude toward one with a disability.

The reader learns how many things have improved since the 1950s for those with a disability.  In the past people with disabilities were seen as a burden on their families. Most professionals gave a bleak outlook for children with Down syndrome.    Romy Wyllie and her husband tried to give their son Andrew as many opportunities as their other two children and incredibly he prospered and grew past everyone’s expectations.

The book was very emotional for me at times.  I found myself in tears when I read that Andrew had accomplished things that his parents were told he never would and I found myself in tears when he had to go through very difficult medical issues.  I would highly recommend Loving Andrew:  A Fifty-Two-Year Story of Down Syndrome for anyone that would like more information about Down Syndrome and how one family would not let their son’s disability define him.

Is Camping an Option for Our Family?

campingImage courtesy of duron123 / FreeDigitalPhotos.net

 

Many families would love to plan a vacation or a weekend getaway for their family but financially it may not be a possibility.  Camping can be a great experience for children of all abilities.  They can enjoy nature and learn how to roast marshmallows over a fire.  It is a great way for families to spend time together and get away from the television and other electronics that seem to have taken over everyone’s lives.

There are many national parks and forests that offer camping sites at economical prices.  Many of these parks offer primitive sites, which have no electricity, or sites for recreational vehicles with hookups for water and electricity.

Tent camping is the least expensive option but you definitely need to be more creative when planning.  You will need to bring along an inflatable air mattress because the ground can be cold and uncomfortable.  Also remember to check the weather and if there is any possibility of rain you must have a tarp to cover your tent and ideally a tarp under your tent because waking up lying in a puddle is not fun.  All primitive camping sites are without electricity which for some can be a bit intimidating.   It definitely takes more planning how to keep food fresh but a cooler full of ice and a few trips to the nearby grocery store will make your trip work.  Some families choose to camp in a tent but go to a site with electricity.  This will reduce any worries if you need to bring along items that require electricity.

Camping in an RV is like bringing your home with you to different destinations.  An RV can cost anywhere from a few thousand dollars up to hundreds of thousands of dollars.  You must consider the vehicle you plan to take on your camping trips because many have a weight and tow limit.  You will need to install an appropriate hitch to your vehicle which will be an expense you will need to consider.  One of the benefits of an RV is when bad weather occurs you do not need to worry about your bed or other items becoming wet.  Another benefit is that most RVs are equipped with a fridge so one trip to the local grocery store should be enough when planning meals.  One of the cons of an RV is that it is a vehicle and it does require maintenance and things can go wrong, such as the time we arrived to our site and tried to put the camper up and it would not rise.  We had a maintenance man from the campground try to help us but nothing worked.  We had to return home.  Another time we had issues with the electricity.  We figured out the problem after a couple of hours but it added a lot of stress to our trip.

We started camping in a tent when it was just me and my husband then we gradually upgraded to a small pop-up camper that cost around $3,000.  This was a basic model with no air-conditioning or heat but could sleep up to four people.  It had no fridge but we just brought a dorm-style fridge with us.  When our children arrived, we upgraded to a larger pop-up camper with air-conditioning, a heater, fridge and sleeping up to six people.  It has a dining area that turns into a bed and is great for having meals and playing games with the kids when the weather turns bad.

Camping can be such a great adventure for kids and adults.  It can be a less expensive option but still offer a lot of fun for everyone.    For more information on camping, you can contact your local national park or local RV dealer to see if camping could be an option for your family.

Tuesday’s Thoughts for 3/4/14

Tuesday’s Thoughts is an opportunity for you to share a great story about your child.  There are so many challenges on a daily basis but there are also great accomplishments.

If you have an inspirational story to share please click  “Contact” and write your story.  Each Tuesday I will select amazing stories to post.

Over the years autism has struck our family with many challenges.  From the meltdowns and the sensory overloads to the continuous therapy and doctor appointments, but the one thing about my son that I absolutely love is the affection he shares.  Nearly every morning I wake up to an amazing 10-year-old boy that says, “I wuv you Mommy so much.  You are so beautiful.”  I am so thankful for his kind words but I think, “Really with my sweats, t-shirt and disheveled hair?”    I take his words with gratitude and a hug.

My son has always been affectionate even to complete strangers like the when he was three years old and the plumber fixed our kitchen sink.  The poor man found a young child attached to his leg and looked completely dumbfounded what was happening.  Then there was the time that his social worker in the public school came back from a skiing trip with a broken leg.  She shared that my son was trying to help by moving the crutches for her, good intentions but he was trying to do it while she was using them.  The wonderful moments sometimes come less often then the meltdowns and the overloads but it’s amazing that it’s those wonderful moments that I remember most.

My Friend Suhana

My Friend SuhanaImage courtesy of Loving Healing Press

 

My Friend Suhana is a wonderful story of a seven-year-old girl who befriends a girl with cerebral palsy.  The young girl meets Suhana at a community center special needs class and instantly wants to be her friend.  The story does a wonderful job of expressing that even though Suhana could not walk, talk or play like other children; she was still a special friend to the girl.

Many children do not understand why people with disabilities are different and this book is a great story to introduce how to be compassionate to others that are different.

I would highly recommend My Friend Suhana.  It is a well illustrated book and sends a good message to children about the importance of respect, friendship and love regardless of one’s abilities.

My Friend Suhana was written by award-winning author and designer Shaila Abdullah and her daughter 10-year-old Aanyah.  My Friend Suhana is available in paperback, hardback and eBook.  For more information please visit www.MyFriendSuhana.com.

 

*I received a free copy of the book to review. There was no compensation. The  opinions expressed are my own and not influenced in any way.