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Blind students with white canes waiting to cross Congress Avenue, a busy six lane road.

By Christi Ambramsky, Parent, Rockwall, TX, and Harry L. Fullwood, Ph.D., Coordinator of Special Education Programs, Texas A&M University - Commerce

Abstract: The authors share a selection of things to keep in mind regarding the life and family of a child with special needs.

Keywords: personal experiences, family, parenting, special needs, professional service providers.

Editor’s Note: Christi came to the ESC 10 Baby’s Luncheon with an amazing variety of “active learning” items that she had created for her son, Eli. Eli is two years old now and his main diagnosis is agenesis of the corpus callosum. He also has cortical vision impairment, unilateral moderate hearing impairment, delayed development, and a number of other medical issues. Christi has developed a sense of what works with children with sensory loss and is eager to share it with both parents and teachers. She can be contacted by email at <>.

 

Recently, I returned to college after working for many years as a computer programmer, my chosen field as a young college student. Although still enamored with computers and technology, I recognize now that people are often guided by lifetime events and circumstances that change career direction. After our fourth son was born with special needs, computer programming did not fulfill me as it had at one time. After dealing with a great deal of fear and reluctance, I quit my job in order to go back to school. In a few semesters, I will graduate with a degree in special education, enabling me to help children like my own and allowing me to teach in a field desperate for qualified educators. After some persuasion, I recently volunteered to speak to one of the special education classes in which I was enrolled. The course, “Introduction to Special Education," is designed as comprehensive review of pertinent information regarding all aspects of special need learners including terminology, classification, characteristics, litigation, inclusion and parenting. When we began the chapter regarding families, I volunteered to speak to my class about parenting a special child. Although I often talked to many individuals casually about my son’s unique needs, I had never formally addressed a group about the subject. I found the talk to be very therapeutic and suspect that my classmates gained more from my personal experiences than the textbook chapter could deliver. As a result of the preparation and introspection required for this public dialog, it occurred to me that there are a number of things I wish every person that we interact with knew. So, to doctors, nurses, therapists, friends, educators, acquaintances and family: I offer this list of “Things to Know!” Without the personal experience of parenting an exceptional child, these items were hard lessons, but soon learned along life’s journey with my beautiful son.

 

1. There is no reason for you to be sorry. It seems to me that the first number reaction people offer when they find out that we have a child with special needs is “I am sorry!" People are being kind when relaying sorrow that something so difficult has happened to us but, in fact, it is not necessary. We are not sorry! Our child is a gift and we embrace him – all of him and all of the things that come with the territory. His disabilities, his 12 doctors, his 5 therapists, all of the love and joy, all of the wonderful lessons that he had taught and the empathy for differences that he will teach our other children. There is no reason for you to be sorry, we aren’t.

 

2. We might need a little extra support. Before we had our son, I could have never imagined the amount of time one child can occupy. We currently have at least four appointments a week, not including the large list of doctors that monitor him or the therapies that he needs each day. This practice is common for families with a special needs child and occupies a majority of my time. My friends may find I don’t call as much as I used to, or, when I do, I may sound irritated and frazzled. Please understand that I still love you and need you in my life. In fact, I may need you more than I used to but am simply overwhelmingly busy and tired. Please, keep calling and keep offering your love and support.

 

3. I really do care. This is kind of an extension of the point above, but something that I would like to make very clear. There are times when I am so tired that I have a hard time concentrating on what others say. Additionally, I may be so worried about something going on that I cannot concentrate on others in my life. Understand that I really do care about what you are saying. Doctors and therapists, please help me by writing down the important things that I must know and feel free to call and remind me if possible. Teachers please forgive me and help me stay on top of obligations regarding my other children. I try so hard to keep everything organized, but lots of things slip by. If you think that I am not listening to you, please try to understand it is not because I don’t care.

 

4. My other children might need some extra support and attention. It is so important to realize that the whole family is affected by major change. I try to help my kids with some of the obvious feelings that they have, but I know that there are a lot of things they would never tell me. Feel free to offer them support. Invite them over to do homework with your child – this activity would offer them support, attention, and be of great help to me.

 

Especially for teachers and caregivers: 

5. Above all else, love my child. I appreciate everything that you do, I truly do. I also understand that sometimes we might disagree. Remember that in the end, the love that you have for my child matters to me most.

 

Especially for doctors:

6. Be consistent! An obvious statement, I know. However, my experience suggests that a doctor may optimistically offer a great deal of hope in the office for my child only to find just the opposite has occurred in a written report to another colleague. For example, my pediatrician gives me all written reports, because she feels it is my right to have them (I agree). The number of specialists that do not send us written reports astonishes me. Consider offering a summary report to your consumers regarding pertinent findings and be sure you are saying the same thing in those written reports as you do with the family.

 

7. Try to be positive. I think that some people will see the last point and this one as opposite. I do not agree. I think that the doctor whom I spoke of above truly thought that he was just being positive. However, being positive involves pointing out the good things, not saying something that you don’t believe.

 

8. Please understand you are not the only specialist we have. Most children often attend only a single specialist. The particular problem he/she may be experiencing is probably a huge issue for the family of that youngster. However, when you have a child with multiple health needs, that is not the case. Please try to keep this in mind. We literally have a pediatrician and 11 specialists to juggle. Consider this before you send us for another test.

 

9. Consider the guilt factor. Parents of children with special needs are often dealing with a great amount of guilt. The causes of many disabilities remain unknown. This parent questions everything that happened during that pregnancy, any issues that may appear as causation and listens to everyone who has an opinion—and there are many. Please consider this when you are dealing with a child with special needs. Are you about to report something that will add to that guilt? Maybe you should make that phone call instead of your nurse. Could there be another explanation that could help alleviate that guilt? If so, take the time to tell this family.

 

Everyone:

10. Try to see beyond my child’s disability. There is so much more to my son than his disabilities. He loves to laugh. He obviously loves his brothers. Try to see these things, and know that he adds so much to all of our lives. Try to see what he can add to yours. Trust me, it will be worth the effort!

 

Footnote: I hope that other parents can use this list. Maybe your list is a little different, but I have found that many of us share similar feelings. I hope that instead of letting things bother and hurt us, we can find a way to educate others about our beautiful children and how they change our lives.