You Are Not Alone

A few weeks ago, my oldest daughter turned 18.  This is an exciting time in her life as she finishes high school and  prepares for college.  My wife and I are very proud of the woman that she has become; however, her outlook wasn’t always so rosy.  18 years ago, my daughter was in the hospital fighting for her life.  She was born very premature (1 lb. 6 oz.) and the doctors weren’t sure that she was going to make it.

The author and his daughter in the NICU

She is a surviving triplet and while it was touch and go for a while, she began making progress.  Right before she was released from the hospital, we found out that she was deaf and most likely had cerebral palsy (CP).  She was labeled as a child that was deaf and disabled.  Needless to say, this is not what we were expecting when we decided to have children.  At the time, we felt very much alone.  While family and friends were sympathetic, no one quite knew what to say.  For a long time, we thought that we were alone in facing these challenges.  Not any more.

In the beginning, we thought of our daughter as a kid with a unique set of circumstances.  We were told that because she was deaf she would never be able to read above a 4th grade level and because of the CP, she would most likely never be able to walk.  One thing about my daughter, she has been a fighter all of her life.  She fought to stay alive and she has been fighting ever since.  Along the way she has proven a number of people wrong.  As parents, we learned to take our cues from her.  We encourage her to never give up and to find another way to accomplish what she wants in life.

Like many parents, my wife and I have made sacrifices to make sure that she has what she needs to maximize her potential.  As a high school senior, she is thriving.  She attends regular classes and  participates in community service projects and extracurricular activities at school.  She does have accommodations to assist with certain tasks but in many respects, she leads what some might call a “normal” life.  Many people often congratulate us on the job that we have done as parents.  While I feel a lot of pride in what she has been able to accomplish, I can honestly say that we didn’t do it by ourselves.  We had help.  There are Four keys that helped us in raising our “special” child.

Know That You Are Not Alone

When our daughter was born, I had no idea of how to help a child with her special circumstances.  Not long ago, I read an article in Education Week that highlighted how Schools for the Deaf around the country are struggling with providing services to students who are “Deaf Plus (deaf students with additional needs).  I was shocked when I read that one superintendent said that about 40% of his total student population fall into this category.

Seek Help

Just before our daughter came home, we met one of our county’s social services coordinators.  She told us that our daughter qualified for therapy services under the Individual Family Services Plan (IFSP).  While taking her to therapy appointments, we also talked with other parents who told us about accommodations that our daughter was entitled to under the law as well as support groups that were available to support us.  I also did some research and found a wealth of information on topics related to deaf children with additional needs.

Have High Expectations

There are so many rumors about special needs children that simply are not true.  In our case, our daughter’s challenges were physical in nature, not mental.  There is no reason why she cannot achieve her goals and dreams.  If Julia was going to have a “never say die” attitude then so were we.  We found out that children with special needs are guaranteed to receive a Free Appropriate Public Education under section 504 of the Rehabilitation Act of 1973 and the Individuals with Disabilities Education Act.  As parents, we have sacrificed to ensure that our daughter receives the best education possible.  We have moved to 5 different school districts to find educators who share our commitment to bring out the best in our daughter.  Our efforts have not been in vain.  Our daughter has consistently made the honor roll, is currently carrying a 3.6 GPA and has a goal of not only going to college but also attending law school so that she can become a Disability Advocate for others.

Photo courtesy of the author

Give Back

As it says in the Bible, “For unto whomsoever much is given, of him shall be much required.”  We had a lot of help along the way and it is only right for us to give back as well.  We have testified numerous times before the Texas State Legislature in support of the Texas School for the Deaf (TSD). My daughter is a high school student there and I have seen first hand the good work that they are doing so we are always happy to help.  We have shared our story and I have even written a book so that parents and other professionals can understand that with the right support system, deaf people with additional challenges can succeed.

According to an article by the Alexander Graham Bell Association for the Deaf and Hard of Hearing, many parents of deaf children with additional needs feel more isolated and alone because of the difficulties in finding a suitable community for themselves and their children.  I want to let you know that there is hope. Yes, it is challenging and there will be a number of roadblocks in your way, but as a wise person once told me “You aren’t the first, you won’t be the last, you will get through this the same way that the rest of us have.”

 

 

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