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Living Life Beyond the Diagnosis- Part 1 - Support Networks for parents of special needs children

Sometimes life just happens and it seems to HAPPEN all at once. Add to it a child with special needs and it is crazy! 

As hard as it is to press the pause button on parenting, sometimes you need the proper resources to face the day.  Everything you need to know could not be summed up in one parenting book, so I have decided to focus on resources and  support networks.   

In a support network, you will find parents who are facing similar situations and online support groups can be a safe space where parents find comfort. It may help you feel less alone, answer questions you have beyond the knowledge of your immediate peers, and encourage you to live life beyond a diagnosis. 

I encourage you to join group specific to you. child’s Disability. My son has Norrie’s Syndrome, a rare x-linked genetic disorder. So, I joined the Norrie’s Association.  I felt a very close bond to many of the families in the group, because they knew what I was going through. 

 I am breaking these Resources into Three Parts- National, Texas, and the Visually Impaired. There are many more than the ones I will provide and even my lists are long. I encourage you to Join Facebook groups for any organization you are interested in and to find groups that are of interest to you. 

Take a moment to review these resources and feel free to bookmark and come back for more. 

                                                      National  Parent Resources

1. Parent to Parent USA -https://www.p2pusa.org/ A support group that matches parents whose children have the same disability. Allows each parent to have contact information and support.

2. The Administration on Disabilities (AoD)  - https://acl.gov/about-acl/administration-disabilities Works with states and communities to increase the independence, productivity, and community integration of people with disabilities. 

3. Office of Special Education Programs OSEP-  https://www2.ed.gov/about/offices/list/osers/osep/index.html Dedicated to improving results for children and youth with disabilities from birth through age 21.

4. The Office of Disability Employment Policy (ODEP) - https://www.dol.gov/agencies/odep/about Develops and influences policies that increase the number and quality of employment opportunities for people with disabilities.

5. The Americans with Disabilities Act (ADA) - https://www.ada.gov/topics/intro-to-ada/ This act of 1990 prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in mainstream American life.

6.  The Federation of Children with Special Needs  -https://fcsn.org/  Provides information, support, and assistance to parents of children  

7. National Youth Leadership Network- https://nyln.org Works to break isolation among people with disabilities aged 16 to 28.

8. Best Buddies - https://www.bestbuddies.org/ An organization to help kids with special needs find friends and be social.

9.  Wrights Law- www.wrightslaw.com/bkstore/bks_index.htm Resources on specific disabilities, effective educational practices, tests, evaluations, legal rights and responsibilities, parenting, and children's issues.

10. The Center for Parent Information and Resources (CPIR)- www.parentcenterhub.org
 A central resource of information and products to the community of Parent Training Information (PTI) Centers and the Community Parent Resource Centers (CPRCs). 

11. Department of Aging and Disability Services (DADS) (Moved to Health & Human Services)- https://hhs.texas.gov/services/disability/consumer-directed-services (855) 937-2372 Long Term Care Services  Information on long term care services and consumer directed services

11. CSHCN - Children with Special Health Care Needs-  http://www.dshs.texas.gov/cshcn/ (800) 252-8023 (CSHCN) is made up of several programs that provide services to children with extraordinary medical needs, disabilities, and chronic health conditions. The CSHCN health care benefits program pays for medical care, family support services, and related services not covered by Medicaid, CHIP, private insurance, or other “third party payor.”

12. Closing The Gap- www.closingthegap.com
Computer technology in special education and rehabilitation resource directory, news articles, education, and conference information.

13. Council for Exceptional Children- exceptionalchildren.org/- 888-232-7733 (voice), 866-915-5000 (TTY) 
An international professional organization dedicated to improving educational outcomes for individuals with exceptionalities. Resources include publications, a clearinghouse on disabilities and the gifted, education resources, and discussion lists.

14. Disabilities, Opportunities, Internetworking, and Technology (DO-IT)- www.uw.edu/doit/
206-685-DOIT (voice/TTY), 888-972-3648 (voice), 509-328-9331 (voice) 
 Comprehensive set of resources and programs with a focus on access to technology, college, and careers for youth with disabilities.

15. Disability Resources Monthly (DRM) Guide to Disability Resources on the Internet- https://www.disabilityresources.org/drmwww.html
Information about legal rights, financial resources, assistive technology, employment opportunities, housing modifications, educational options, transportation, and mobility services.

16. K12 Academics- www.k12academics.com 
National education and disability resource website

17. National Center on Secondary Education and Transition (NCSET)- ncset@umn.edu, 
Identifies needs of youth with disabilities to successfully participate in postsecondary education and training, civic engagement, and meaningful employment.

18. National Council on Independent Living (NCIL)- ncil.org/
202-207-0334 (voice), 1-844-778-7961 (toll-free voice), 202-207-0340 (TTY)
Information and resources for people with disabilities and their families regarding independent living.

19. National Standards for Systems of Care for Children and Youth with Special Health Care Needs-cyshcnstandards.amchp.org/app-nationalstandards/
Resources and information on standards and programs for all stages of life for people with disabilities.

20. Office of Disability Employment Policy, U.S. Department of Labor- www.dol.gov/agencies/odep
866-633-7365 (voice), 877-889-5627 (TTY) 
 Resources to enhance the employment of people with disabilities.

21. Office of Special Education and Rehabilitative Services (OSERS) www2.ed.gov/about/offices/list/osers/index.html 
Provides leadership and financial support to states and local districts to improve results for children and youth with disabilities.

22. PACER Center- www.pacer.org
952-838-9000 (voice), 800-537-2237 (toll-free voice)
A coalition of parent groups that provide information on education and advocacy for children with disabilities. 

23. Center for Parent Information and Resources-  www.Parentcenterhub.org/resources (973)642-8100 Disability library and information on related services.

24.  eParent- www.eparent.com (877) 372-7368 eParent.com is an online multi-media company dedicated to be the ultimate   resource for everything related to the special needs community

25. NORD (National Organization for Rare Disorders) -/www.rarediseases.org (800) 999-6673 Information and referrals on rare disorders  

26. MUMS (Mothers United for Moral Support)-www.netnet.net/mums/ (920) 336-5333 National parent to parent network which provides information and (877) 336-5333 emotional support to parents whose child has a rare disorder. (toll free for parents only)

27. NIH (National Institute of Health)- www.nih.gov - (301) 496-4000 Stephen Groft at the office of rare diseases provides information  on which hospitals and physicians are doing research or clinical trials on any disease

28.  NAMI (National Association for Mental Illness)-www.nami.org  (800) 950-6264 Provides information and training programs for caregivers of  individuals with mental health issues or brain disorders

29. National Fathers Network - www.fathersnetwork.org (425) 653-4286 Provides training and emotional support for fathers of children   with special health care needs and developmental disabilities. 

For all the Special People Known as Father

In photo: my husband and son in are walking away from my camera in a field of grass with trees all around.

Last weekend we celebrated Father’s Day. But, I wonder if they really know how we truly appreciate all that they do. I  want to dedicate this blog to all of the fathers of special needs children, my own fathers, my son’s father, and most importantly to my late husband and current husband. 

As a young girl, I grew up in two households, since my parents were divorced. I remember my father picking me up in his Corvette. Then he would tell me, he wanted me to help him get back to his place.  I look back and remember, the dad who took me to my first Astros game, who introduced me to comedy, who wanted me to see the world and took me on trips, and bought me my first pet.  I was crushed the day I got a message from my mom to come back to her place. I had been at an Astros game with friends that day and my dad had been close to my heart. I knew something was wrong and drove back to Refugio, where my mom lived, and was told my father had died in a car wreck. My father never had the privilege of getting to know my children, his grandchildren.  My step father Ronnie, also known as Opa, did. 

Not only was my stepfather there for me through my teens to help raise me, but he also was there for my children. He had a special relationship with each of my children.  He understood they had special needs, but offered support and guidance from the time they were babies until his passing this past October. Oddly enough, he passed on the same day as my  previous husband, Skippy,  who was laid to rest two years prior.  For the knowledge, sacrifices and encouragement they all gave to me, I am truly grateful. 

Regardless of whether dads are helping to raise their children in separate homes, as a family, or as a step father, the fact is our children need their fathers. For those fathers who make the effort to be there for their children, I want to express my deepest gratitude for your unwavering dedication. Your sacrifices, both seen and unseen, do not go unnoticed. You are a beacon of strength for your family, and your love leaves an indelible mark on your child's heart.

My oldest, Davis was blessed to develop a loving bond with not only his biological father, but also my late husband, his step father. He helped me raise my son through the teenage years, forming a very strong bond. Davis thrived under his care. He taught my son everything from consequences to joking around, while nurturing him to be his unique self.  My son will still ask me to do things like Skippy did it.   He also has a great love for his biological father and all other family members. He asks to see his dad often, telling me the many places he has been with him. There is just a special kind of love between a boy and his father. 

I am now remarried to Billy whom I have known for over 40 years, having grown up in the same small town. He is teaching Davis the wonders of being be a traveler as well as helping him grow into a young man. Because of Billy, my son was the second blind person to climb Old Baldy in Garner State Park.  He was able to experience the sounds of Yellowstone, with all of the bubbling mud pits as well as the sound of Old Faithful. Davis gave everyone around us a good laugh when he yelled “what’s that noise” when Old Faithful blew as he thrust out his recorder out to catch the sound of the water. He loves to record sounds and scrambled to get his recorder for this unique sound.  We have been lucky enough to travel throughout many of the Western states  and up to Western New York. He has not only recorded the sounds of Yellowstone, but also the gunfight at Tombstone and the falls at Niagara Falls. I am so thankful for the fathers in his life. Not only did they nurture  his growth, but they have been wonderful supports to my other son and myself.

My other son, Carson is a gamer. He also has very high functioning autism.  Although he and my late husband did not always see eye to eye, he knew Skippy  loved him and wanted the best for him. My husband Billy,  who is also a gamer, has really brought him out of his shell. Talking to him about games as well as the hardships of life. He has shown him the joys of learning a new skill, by teaching him how to do a form for martial arts tournaments. This is where I saw a huge change in my child. When we first went to tournaments, my son did not want to be in the same room due to all of the noises and crowds. But he asked Billy to teach him and he experienced a huge transformation. He not only walked into the room and hung out by his ring, but performed with confidence. He even would do his form if he had no one competing against him, impressing several of the martial artist judging as well as Billy and I. I credit my husband for guiding him and encouraging him to see his potential and providing him with the opportunity to explore something new and grow in his confidence. 

As a teacher and parent of special needs, I take notice of all of the families I encounter. I see that it is not just the mom who supports the growth and development of our children.  The fathers presence makes a significant impact on the family as well.  Dad’s, your patience, understanding and endless encouragement create an environment where your children feel safe to explore, learn, and grow.  Your commitment to the child’s well-being is unparalleled, and your love carries your child through every hurdle, setback and triumph. By embracing a child's uniqueness you teach us the power of strength, acceptance, empathy and unconditional love.

I am sure that being a dad is really hard work. Being the dad of a disabled child is ten times harder! I know you notice your friend’s children, who grow into independent men and women, go to college,  get jobs, marry and raise their own families. You watch as your own children struggle to progress and not reach the milestones that go along with the “typical” child’s journey.

I am sure that it’s isolating and a bit lonely to watching your child/adult child’s peers doing every day things with their dads reaching typical milestones, having families and careers of their own.  You may feel as if your child was left behind and feel left out of  the loop at times.  One of the hardest parts in this,  is having to plan for what happens after we are gone.  For those dads that have children with special needs, your job of providing quality care and programs for your children does not end. You know this is a lifelong gig you’ll  be doing long after other dads have seen their kids leave home and start their own lives.  However, fathers have a knack for finding the joys in life while nurturing their children. I believe you help your children become stronger and more confident. 

We know this is tough for a father, but not only do you bear this weight you make it look easy.  Fathers provide comfort during tough times and inspire hope for a brighter future.  You embody strength, resilience and unwavering support for your amazing children.  A fathers ability to see the beauty and potential in their child, even when the world may not, is truly inspiring. Your role as a father to a child with special needs is nothing short of extraordinary, and it deserves recognition and admiration.  "Sometimes the things we can't change end up changing us"

So Thank you for:

Playing the same songs every day because you know your child loves them

Taking your daughter/son to numerous doctor appts. year after year

Pausing your program on TV several times to answer questions or to deal with a problem 

Patiently listening when your daughter/son is talking, trying to understand what they are trying to tell you

Laughing at the same antics that your son/daughter does day after day, year after year

Trying to balance your life with work, providing a quality life for all of your children, providing support for not only the children, but your wife/partner

You are loved and appreciated for all that you do.

Laura Swinney

Blessings in Disguise

When you are pregnant, you dream about all of the opportunities your child will have; hoping for a bright future, miss out on nothing. When told that child is disabled those dreams come undone.

When Davis was just about one month old, I discovered that he was blind– not just visually impaired, but blind in BOTH eyes.     Talk about scary..  as I sat waiting to find out why my child was not sleeping and seemed to cry all of the time. I watched as the Dr. examined my son then went white and took a seat on his stool and faced me with a look I had never seen before. What was wrong and how bad is it that the Dr. is acting this way?  The Dr. told me we had to take him to a specialist as soon as possible because he could not see.  He could not tell me the cause of my son’s blindness, but a good Pediatric Ophthalmologist would be able to give me a diagnosis.

What!  - - What?   - -

Did I miss something ?– this was the sort of thing that happened to other people, wasn’t it?  

After seeing a few Pediatric Ophthalmologist,  it was  confirmed, he has Norries Syndrome, a  rare x linked genetic disorder. At the time that meant about 100 cases in the United States.  My life had been turned upside down and inside out.  I was not really sure how to handle it.  

With the diagnosis of Norrie’s Syndrome, I learned, that someday, I would  have a deaf blind child and there was a good possibility there would be some mental delays.

This is when fear crept in – the fear that I wouldn’t be able to cope physically and emotionally with caring for a profoundly disabled child.  

There was also guilt – for resenting that my life would never again be my own, that my child would almost certainly never live independently.

The dreams I had and the vision in my mind of what my family would be like looked quite different from how the average day played out in my home. 

 So how did I start to build a future for my son?

The wonders of the internet led me to meet virtually, and later in person, other families with similarly affected children.   I joined the Norrie’s Association which was a national group of families with Norrie’s children and adults with Norrie’s. 

The support, comradeship and sharing of advice which followed was tremendous, and is one of the greatest benefits of having a “label”.  These support groups changed my life. It was like finding a lost  family member. 

I threw myself into learning everything there was to learn about visual impairment and being deaf blind. I began to go to conferences where I met other parents with blind children, as well as professionals in the world of VI.  I loved these conferences! I met amazing people who were traveling along the same journey, as well as some insightful professionals. As I met other parents, I saw that even though we had different lives and different needs, there was an understanding that comes with being a parent to a special needs child. It is like entering into a secret club and only we know the password.

Many parents feel that initial fear and guilt deep in the pit of their stomach. It is an ever present feeling. We also learn patience and witness miracles that we otherwise would have been too busy to  notice… we learn acceptance and have an unconditional love for this unexpected gift.

Yes, I said GIFT! 

As much as I wanted and expected to help my child grow and learn, I found that while I helped him,  he was teaching me to see the world in a new light. My son’s blindness has given me a perspective I never had before and without it I would have a very different life.  Davis has a certain type of innocence that never leaves.  It is not all sunshine and roses. I have struggled with many things as I have raised him. I have dealt with tantrums, unexpected behaviors, the frustration of trying to communicate, and witness meltdowns in both public places as well as at home. Yet even with his disabilities, he has extraordinary abilities.

At three I saw Davis. spelling difficult words on an interactive alphabet toy yet, he was not talking.   I saw him solve difficult math problems in his head.  Davis can tell how old a person is and the day their birthday will fall on if he can get them to share their birthdate. I saw his remarkable memory of elapsed time, remembering not only an event, but the date that it happened.  Davis loves cars and can tell you what kind of car you have just by touching it. 

All of this does not keep me from fearing the extraordinary circumstances I and all deal with as we and our children age.  That fear we had originally is easily triggered at certain milestones. It has happened each time Davis switched schools, as he approached the magical age of 18, the day he graduated, and the first time he was fitted for hearing aids, just to mention a few.   I am sure there are more of these moments in my future. 

It is like riding a roller coaster,  one minute I am hyper focused on dealing with the day to day issues, the next I am worrying about his development, his future, or angry with people not giving my son a chance.  I have come to realize, it is a part of raising a disabled son. 

Right now you may not have 23 years perspective, maybe you have 23 days, please listen to me as someone who’s been there. Someday you will look back and marvel at your transformation to a special needs parent. Have faith in your child and yourselves! Love them and help them to discover the world.  As you help them, you may see your world in a new way too.   You can’t escape what is ‑ the disability – but you can find ways to make life full and rich for your child and yourself. Your life will be different than you had planned, but you may discover that this gift, your child, is a blessing in disguise. 

Laura Swinney

** There is also now support for families of disabled children who don’t have a diagnosis, through an organization named SWAN – Syndrome without a Name. 

***When I encounter a new parent with a special needs child or anyone truly wanting to know what it is like to be a parent to a special needs child, I give them a copy of “Welcome to Holland”. I love the simplicity of it and how perfectly it parallels what it is like to find out you are a parent to someone with special

Welcome To Holland

by Emily Perl Kingsley

Copyright©1987 by Emily Perl Kingsley. 

All rights reserved. 

Reprinted by permission of the author.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this……

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans.  The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland.”

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy.”

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."  

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

*     *    *

Assets

Hello World! I have created this page to discuss special needs. I am a parent of special needs children as well as a certified teacher for special needs. I specialize in visually impaired, but if you know anything about visual impairments, you know that many visually impaired are multiply impaired. 

My son, Davis is deaf blind and autistic and my son Carson falls on the autism spectrum. 

My hope is to be able to share my many experiences with you, answer questions, and maybe even share some resources and ideas with you. I hope that you can learn from my experiences, good and bad. 

That being said, you must understand this is a journey.  Although I was already a teacher, I did not have the knowledge of what it takes to be a parent to a special needs child.  I learned along the way, with the help of  many other special needs parents, teachers, and the best teachers of all those that are disabled. 

I called this blog Special Assets because it is about special needs and I have learned that my child and the children I teach have been assets to my life.   

Belonging to this community has given me a perspective I never had before and would have a very different life without.

Whether they are typical developing children or special needs children all children have something to share with the people around them.  Having a disability is not a barrier to success; a negative view of their limitations is the barrier.

Our children and yours are assets to our life.