adoptspecialneeds.org

What is it like to parent a child with special needs of Microtia/ Deafness, Branchio-Oto-Renal Syndrome and burns?

The special need listed on Anna's medicals from China were Otocleisis and Rickets.  The Otocleisis ended up being Microtia/Atresia and the rickets were non-existent.  Anna's microtia or "little ear" as Anna likes to call it is the least of our worries.  Anna definitely knows that she has one little ear and one big ear, but at this point it doesn't really affect our daily life.  Occasionally we will have other children ask, "What happened to her ear?" and I will just calmly explain that that is the way she was born. Her burns were also quite noticeable when we first came home and we used to get lots of comments and questions about them as well.  Now they have faded and are not much of an issue.

Microta/Atresia is often listed as one of the minor needs in the adoption community.  In Anna's case because it ended up being part of a larger syndrome, it has been anything but simple and easy.  Anna has greatly malformed inner ears and is essentially deaf.  In the last fifteen months she has had 8 surgical procedures.  Only the tonsils/adenoid removal  and plastic surgery on some of the burning on her stomach were unrelated to her syndrome.

But being Anna's mother has been my greatest joy.  She has faced so much in her short time and is still so happy and loving.  She is such an amazing little girl.

What does caring for a child with several special needs mean in day to day life?

2 1/2 years out from adoption and we are still at the doctors on average once a week.  In order to help Anna reach her full potential Anna attends a school 45 miles from our house.

Last year I drove her each and every day to and from school.  It was very difficult to fit work into her school schedule.  I've had to make lots of adjustments in our life to give Anna what she needs medically and educationally.  It's all worth it, but it hasn't been easy.  Now our home school district buses her to school and back and it has been somewhat easier time wise. Last year we left the house at 6:45 every morning and had several nights where we were not home until 10:00 pm.  (Our early nights were to get home by 6:30 or 7:00 pm)

We also have to do some things a bit differently than other families.  Because Anna can not get her cochlear implant wet, we have to manage our time by the weather.  If it even looks slightly stormy outside I'm more reluctant to take her someplace outside for fear of bad weather.  I have to make sure that when I speak to Anna she is facing me.  Even with the implant she still needs to be able to see my lips as a kind of confirmation of what she is hearing.  I tend to hover a bit when we are in a play situations with friends because Anna's conversational skills are still lacking.  Her articulation is still way behind and she can be difficult at times for even me to understand.  (Though her language has progressed so much in the last year.) Certain activities like swimming or going to the beach in the summer are really difficult for Anna.  She does go, but she has to take off the implant so she has to solely rely on lip reading to understand those around her.  (She does sign a bit, but most of her friends are hearing and she really wants to fit in with that world.)

What special things should a perspective adoptive parent need to know or do about his or her medical condition(s)?

I think parents need to be aware that while Microtia/Atresia can be a minor SN, it also can be a very involved, time consuming SN.  I think most people take the medical reports from China and believe more than they should.  Many times I've heard parents say, "my child is listed as having unilateral microtia/atresia with good hearing.  She responds to her name and other sounds."  Uh, Anna was listed as having perfect hearing in her ear without Microtia.  She in fact had a profound loss in that ear.

Educate yourself on all the syndromes that can be connected with a Special Need.  You never think your child will be the one to get the complications, but it does happen. 

What, if any, are the challenges a child with these special needs face in daily life, school, sports?

Anna has a compromised sense of balance.  Sports are really not in our future.  She can run around with her friends on the playground at her current school, but I'm not sure how that will work once she is mainstreamed. Plastic slides on playgrounds have the ability to wipe out the programming on her cochlear implant so I'm not sure how recess/gym time will work for her.

Anna currently attends an oral school for deaf and hard of hearing children, but I hope to have her mainstreamed by first grade.  She will probably always need to be in the front row of classrooms even with the implant on.  Her teachers will need to be more aware when they teach of facing the students and speaking clearly.  That said I expect that Anna will excel in school.  At just over four she is showing an interest in reading.  She has an incredible curiosity and desire to learn which will serve her well.  We are having to work hard and fight to get her to where she should be, but I think we are setting her up for endless possibilities for the future.

Additional Thoughts....

I would like to add that if you adopt a child that is deaf or hard of hearing educate yourself on the modes of education.  I still take some flack for deciding to educate my child orally.  But I followed her lead.  Not all deaf children are be best served in a class with sign language or a total communication class. I've had to fight the school district to get them to support this, but Anna has made so much progress during her time at the school that I know it was the right decision for her.

Julie Anne Robbins