March 7th, 2011 by Rachel | Tags: Children, Cochlear Implant, Encouragement, High School, IFSP/IEP, Parent's Story | 14 Comments »
Debbi Culp-Hook has written a long story but a worthwhile to read about her overcoming obstacles in raising a son who is deaf but is a bilateral cochlear implant recipient and has Asperger’s syndrome. Her story is an inspiration for parents of deaf children with cochlear implants who have additional disabilities. Any deaf children with additional disabilities can learn to hear and speak as long as parents like Debbi are involved and work hard!
While we are not “technically” cochlear implant pioneers, it sure felt like it to us at the time!
Ian is getting close to 18 years of age and it feels like it has been quite a long journey. Ian is not just a deaf child, he has other “issues”. Maybe his story will help others who have extra challenges beyond deafness (like that isn’t enough!?!) and help you see light at the end of the seemingly endless tunnel. I do see light…some days it feels like the train…and other days it feels like really warm sunshine.
Ian is the final addition to a yours/mine/ours family. My husband has a daughter from another marriage, and I have two sons from another marriage. No hearing loss in our families except for my husband’s mom and hers was a result of a childhood illness which left her severely hearing impaired on one side…never aided, she just coped with it. So, we weren’t expecting anything. Well, actually we were expecting a potential problem, but not hearing loss. When I was pregnant the m.o.m. test showed we had a 1/100 chance of having a child with Down ’s syndrome. We scheduled amniocentesis for the 18th week so we could be prepared…and then I had to have my gall bladder removed at 17 weeks gestation. At the time there was no published research of a pregnant woman having laparoscopic cholecystectomy. The medical professionals felt, however, this procedure would be the fastest and least intrusive method so I wouldn’t have a big incision stretching along with my pregnant belly. So we went for it, but elected not to further stress our little fetus with amnio. We decided to prepare ourselves emotionally for Down’s but to hope that would not be the case. We were mature individuals at that point…36 for me and 39 for my husband. I know I handled life a lot better at that age than I would have at a much earlier age! We knew we would cope with whatever life handed us. Still, there was a quiet look at birth and a sigh of relief when my R.N. husband whispered in my ear “doesn’t look like Down’s” after the birth. We were thankful and went on our merry way with a very healthy newborn that slept wonderfully, was a “good” baby, and loved the routine of falling asleep to recorded music. His Grandma from Indiana sent a cassette tape of organ music she played and recorded a little story…it seemed to be his favorite. He would fuss and cry if the music wasn’t on when we put him down. Hmmmm. We have no idea why he is deaf…I’m just guessing genetics. There was no precipitating event.
I noticed he wasn’t babbling like I thought he should. My kids were early talkers. My husband and I elected to adjust our work schedules when he was born. We had the desire to not make this child go to daycare. Our other kids didn’t have that option and we felt this was important to us. I went part-time…30 hours per week and John began working 3-11 shift. We worked at the same hospital and would pass off the baby carrier at the time clock. I worked 8-2:30 and he worked 2:45-11:15. It worked really well and we have continued with that evermore. John enjoyed taking care of Ian “on days” and I had the full care in the evenings. It was busy and we only saw each other at the time clock and on the week-ends…so maybe that’s one of the reasons we didn’t fuss much over things we disagreed on…like why Ian wasn’t babbling. He said “just let him be”. John took him to the doctor appointments and he had the doctor “check his hearing” and Ian turned to the tuning fork every time and he turned to the clap behind him every time. Of course, tuning forks make vibrations and claps produce a small shift in the air. Ian was not a sick infant. One fever in the first 15 months of life, quickly controlled by Tylenol, and over it within 24 hours. We counted that as a benefit of no day care! No disease that would have caused an onset of deafness.
Then, my Mom took Ian with her to a friend’s birthday party on Labor Day because lots of the grandmas were bringing the grandkids. A balloon popped behind Ian and all the kids squealed…but Ian didn’t react…he just lay in his carrier. A pediatric nurse happened to be nearby and she said something to my mom about getting Ian’s hearing checked. She did a lot of little tests there at the party (quite irritating my mom) and it resulted in my mom stewing over it and telling us when she brought Ian home. I rolled my eyes, knowing John was not going to like this…but I waited up and talked with him. The seed of worry that was in the back of my mind had sprouted. I informed John I was calling the pediatrician the next day. John reminded me Ian (whose room was at the top of the stairs next to the stair rail) would stand in his bed doing the “goobedy goo” sound when “he heard us” coming up the stairs. He reminded me Ian loved to play with the pots and pans and clap the lids. I said all he does is make “mmmmm” sounds…that’s all….and laughs out loud. No “mamama” or “dada”, nothing that is a sound you would expect from a 13 month old child. So, I called the pediatrician a few days later after ramping up my observation over the week and “testing” him over and over– sometimes he turned, sometimes he didn’t. The nurse said sometimes babies had “water on the ears” and that might be why sometimes he seemed to hear and other times he didn’t. They’d see him next week, or if it felt urgent, we could come and be worked in the next day. I said, no nothing urgent, and scheduled an appointment mid-September.
Long story, but end result is final diagnosis at 15 months of age – deaf as a doornail. Profound. Flatline ABR. Lots of tears, lots of OMG-how-could-we-have-missed-it and onward we went. We knew NOTHING. Got hearing aids under a trial with the school district, got some response in the low, barely edge, of speech banana with aids; at the time, not eligible for cochlear implant because of it. All of that changed shortly afterwards but we were on the path of Total Communication and my husband didn’t want anything that was, in his opinion, experimental. What I learned is I am not a good receptive signer…and, I really wanted my child to speak. I got a copy of a video that was on PBS showing a cochlear implant surgery on a child and the follow-up. I cried and cringed…it was kind of graphic. My husband and I looked at it like 3 times…. And hearing the child begin to talk… we looked at each other and nodded. We might want that!
Flash forward months later – change of jobs, change of insurance – consultations – visiting oral deaf program at school district where one child (older than Ian) had just had a CI – gave us a reality check. Whoa…hard work – long road – really expensive! No one ever mentioned the words auditory-verbal; learned those words a few years later. We barely had a computer at this point. It was early 1995 and the internet was not booming with awesome search engines, no Facebook friends, almost no information to be found. Ian was the youngest child in Austin, Texas, at the time, to be implanted with the Cochlear N22 in November 1995. There were 3 physicians in Texas doing the surgery. We found one in Austin, one in San Antonio, and one in Houston when we started our search. We decided to go with the physician in Austin because the thought of going to “programming” (we didn’t know the lingo yet) in another town was just not realistic for us. So, there we sat, in November 1995, in that hospital waiting for our 28 month old to come out of a 4 hour surgery with no support group, no CI Circle, no internet group of people that I could get an instant answer from. We were flying by the seat of our pants and praying really hard.
What we did have was a family that was accepting and helpful, we had a great school system that believed cochlear implants were the future for oral deaf education, and they were really good people interested in helping us down this path. He started in the Infant-Parent program at 15 months, moved away from TC when he got his implant, and we started down the auditory-oral path (also didn’t know that was the name for the path – no one ever told us!)
When Ian was 3, and had moved to the Early Childhood program at the school across town (bus ride 20+ miles each way each day). It was in this year that the word “autism” entered our sphere. Ian had a deaf educator who felt Ian was different than the other deaf children. She introduced the possibility of autism. We had a COW. We were sure it was the deafness and he was the only one with a CI, and what did she know? A regular (i.e. not specific to hearing impaired) school counselor came and observed and wrote a scathing report (with no positive remarks) – everyone cried – I filled out my questionnaire…no autism…and the teacher’s questionnaire was polar opposite of mine (well, of course, our home was nice and quiet and fairly structured…and he was barely there because he got on the bus at the crack of dawn and didn’t get home until about 3 hours before bedtime – I saw a different picture – meltdowns on the week-end were, in my opinion, because we couldn’t communicate effectively – DEAFNESS). So, we had an ARD meeting for consideration of an IEP. The district special ed director for the Regional Day School for the Deaf was really down to earth and she said “you know, we wouldn’t be doing anything different for Ian than we are doing now, even with a different diagnosis…let’s just wait and see…we don’t need more labels” and we worked on some reward systems and behavior management. On we went.
Fast forward 3 or 4 years and we decided to repeat Kindergarten to give him some time for social growth (as did most of the other parents of all these deaf “summer” babies), more kids followed Ian and became implanted, we got more information from online sources as the internet grew, and I met the wonderful group of parents on the CI Circle. I absorbed information like a sponge…and I grew to know “something was different about Ian”. Even among his deaf peers he was “different”; his speech was delayed (got oral motor apraxia diagnosis at age 4 or 5), he was clumsy (P.T. – it comes with deafness) and couldn’t hold his pencil correctly, began some finger flapping when over stimulated (O.T. brought on board, weighted vest and procipriation diagnosis), he played alone always – although enjoyed being around other children – he didn’t play “with them” for more than a minute or two, he had huge meltdowns when anything didn’t go his way. He was quite happy and interactive playing with his older siblings and their friends though; those with more patience and good hearing. We used some Sensory Integration interventions like weighted vest, quiet time rewards, OT and SLP used a spinning swing which seemed to center him and his speech would begin clearing – but not for long without further intervention. Body awareness deficits, fine motor deficits…the list kept growing. We tried everything…I researched, I thought “Asperger’s syndrome might be the answer”…but one of the criteria was no language delay. Well, what if there was no deafness and no apraxia…would he have a language delay? He was obviously very intelligent. He was hyperlexic…he knew the alphabet and could read before anyone in his class…he could read words…but he didn’t know what anything meant – it was just rote reading. We were juggling so many balls with so many issues. I finally went to the CI Circle for guidance. A woman on the CI Circle introduced me, online, to a psychologist at the University of Texas in Austin… she came to our home… she saved our lives! She worked with us pro bono. She had a brother she cared for who was severely autistic. She didn’t think Ian was autistic. She thought Ian was ADD…not ADHD, but ADD. A different school psychologist re-tested him and agreed she thought he was ADD also, maybe/maybe not autism – she couldn’t make a definitive diagnosis. At this point, we worked on managing the behavior. A positive reward system helped us turn the corner. It seemed so simple once we started doing it…but we were so ingrained in the time out philosophy (which didn’t help AT ALL) that we couldn’t see the trees for the forest. She helped us so much – she was a behavior specialist…and that is what we needed. We got medication for the ADD, we moved to the neighborhood school at this point as well because everyone else was getting mainstreamed…I stomped my foot and said we were too. The pro bono psychologist came to what FELT like “the world’s biggest and longest ARD” as well as the principal from the neighborhood school. The stars aligned and the world seemed to stop fighting us. We got an aide for him without any fuss whatsoever. The medication worked MIRACLES. He started blossoming. His speech improved dramatically (I believe because he was surrounded with good speech models – and had no more deaf speech models) but still, it was, and still is, difficult to understand him – especially when you first get to know him or when he is anxious or upset over something. At least the diagnosis changed from apraxia to dyspraxia… it was a step forward. We knew we were on the right path – with all the right support services. An itinerant teacher of the deaf worked with him daily and we had such good relationships with all of his providers. Life was slightly smoother for the first time. Still, something was different about Ian – different than other ADD kids, even more apparently different than his deaf peers that we maintained a close connection with. There was more to come.
In 4th grade, the school’s special ed chair asked to meet with me. She was his resource reading teacher so I was not expecting anything other than a regular conference. She had Ian’s entire file with her when I arrived – that should have been my first clue. Ian’s file, at the time, was comprised of 3 huge overfilled paper files. Lots of years of documents! No computerized IEPs for most of his life…that was just beginning…lots of paper! The teacher said she had gone through Ian’s entire file. She talked about her special needs child (which I knew about from other conversations) and she held my hand and said she really thought Ian was autistic. She said, like me, she thinks he would have been diagnosed Asperger’s years ago if that one little criterion hadn’t blocked the way. She said she had taught a LOT of autistic children and she felt Ian was very high functioning…but as his deafness became to be less of an issue because of the cochlear implants – she was worried when he entered Middle School in 6th grade, he would not have the services he really would need if we didn’t hammer out, one way or the other, what was “different” about Ian. I cried, she cried…and I agreed to another evaluation (now his 3rd evaluation for autism).
I met with the educational diagnostician and I really liked her approach. She interviewed me in great depth, she had obviously done her homework on Ian’s history, she interviewed many teachers, his aide, his itinerant TOD, she had the local speech therapist observe Ian over several weeks in class (the SLP at that school supervised autism student files – so lots of experience there), she visited with and observed Ian on a lot of occasions over the course of a month. The final report…if Ian hadn’t been deaf, they believed he would not have had a language delay, and his intelligence was really high, but his social skills were REALLY low…she wanted to support a diagnosis of Asperger’s syndrome. She got a 2nd and a 3rd opinion. It was finally declared. I cried again….but I finally accepted it and knew this would provide us some more support and a different way of looking at how to help Ian. I have never regretted this diagnosis since….as he matures and grows – it is so very apparent that he is a very high functioning autistic young man who happens to be deaf. The cochlear implant allowed him not to be trapped in a silent and very confusing world…yet also provides some excess stimulation from time to time that has to be dealt with. In 2006 Ian became bilateral so has an N22 on one side (that is now 15 years old) and a Freedom on the other side. He really doesn’t like his 2nd implant. It is a daily struggle to make him wear his processor. He thinks he “hears fine” with just one…but we know from testing, that is not so. Change is never easy for Ian. We persevere… because that is all we know how to do.
We moved away from Austin and off the path to a high school with 3000 students with a lot of gang activity, to a small little town on the Texas Gulf Coast in 2008 so he could grow in independence in a smaller, safer environment. To allow this, his Dad became a travel nurse and I am lucky to be able to work from home. I am in constant contact with the school. They provide excellent services for him…they think outside of the box. Ian is the only deaf student in the high school…and the only cochlear implant student in the district. They only have a handful of autistic students. We are lucky to have landed here, despite the additional challenge of the majority of students, and teachers, speaking with a Spanish accent. Ian is a racial minority as well as being in the minority due to his disabilities. He’s overcoming that with great aplomb though and even made the attempt to take Spanish for a year. The oral motor dyspraxia really gave him problems in expressive Spanish and he only took one year as a result.
There are a whole different set of challenges in high school for young men like Ian. Especially young men like Ian who have been mainstreamed, and have to learn to deal with their “differences” in the halls of a high school where everyone knows everyone else. Ian didn’t know he was “different” until about 8th grade. He knew he was deaf, obviously, and knew he took meds “to help him focus”…but until he started attending our ARD meetings, he didn’t really comprehend that he was an Asperger’s child. Even then, it didn’t sink in that he was autistic until he was in 10th grade (age 16) and he took a class called Communications Applications. There was a paper to write that involved “autism”. I kind of “off the cuff” said, “oh, that’s interesting, you should know lots about that!” and he looked puzzled. “Why?” he asked. I responded with a statement about Asperger’s being on the autism spectrum…and holy smokes he exploded. I AM NOT AUTISTIC…I AM NOT MENTALLY RETARDED. It took a lot of talking and explaining and still…to this day…he somehow equates autism with being mentally retarded. Nothing is ever easy!
Ian is a work in progress. His vocabulary is on grade-level…but there are still words every day that he asks “what does this mean?” and it is such a common word that it takes me aback. His expressive writing is delayed. He does well in classes that are “facts based” – math and science and social studies. He is in 11th grade and has already excelled at his COMPASS test for math placement at the post-secondary school he wishes to attend. Twice has taken the ELA COMPASS and struggles with the written component. In counter to that, his PSAT was much better in the ELA sections than the math sections! That said, I never dreamed he would want to go to college.
He looks to the future. He wants a girlfriend. He wants to be independent. He wants to develop video games. He wants to get a degree in Digital Media Technology. He takes classes in animation and digital media and principles of video arts. He is in all regular classes….no modification to curriculum, just accommodations. He plays guitar, loves to read manga, loves to play video games, and loves music, especially The Beatles. Ian also has a wonderful sense of humor…although sometimes it gets him in trouble!
He wants to be like everyone else. But he’s not, and from one minute to the next it breaks my heart…and it gives me strength…and I so admire all that he has accomplished and all I know he will accomplish in his future.
Sometimes, in the past and sometimes now, I wish Ian had been “just deaf”. Who thinks such things? I do.
Then, I remind myself…he’s intelligent, he has so much to offer the world…and I wouldn’t change him for anything. Still…if only…