By Sara Kennedy
Families find the critical support they need in the day to day adventure of raising children through extended family members, friends, the school or church or other communities they might choose to join (“in real life” or online) as well as the neighborhoods they find themselves living in. Those natural support networks do not always expand to fit the needs of a family raising a child who is deaf or hard of hearing easily. While there is lots of support for raising a fairly typical one year old, the expertise in helping parents to understand how to bring language to their deaf or hard of hearing child can be lacking, biased (as in “our way is the only way”) or difficult to access for many families. What if what appeared to be an excellent educational program was across the state instead of in the local district? What if more expertise could be found across state lines or a critical mass of deaf/hh peers and the promise of full language access regardless of communication mode beckoned from a whole n’other part of the land?
Many parents relate that some time during their d/hh child’s life, they either considered moving for access to what they perceived as better services or actually did pack up and move across regions and even countries. At H&V, we wanted to take a closer look at what motivates a family to move (or stay) and perhaps glean some wisdom for families considering such a move. We interviewed families from widely different backgrounds and regions of the country for this look at moving. All agreed that the choice to move was complex, involving everything from a job to climate change, to loss or gain of extended family, the effect on siblings, marriages, and more. Ranked high on the difficulty scale included the challenge of discerning whether the new location could really deliver all it might promise on the marketing brochure.
For most families we talked to, the choice to relocate was spurred on by two reasons. First and foremost, families struggled with a lack of specialists in deaf education, early intervention, and/or audiology in their original region. If that lack of specialists also meant a lack of professionals familiar with the preferred communication mode for their child, families considered moving even more seriously. Lisa Crawford, now in Texas, notes, “The first early interventionist provider who visited us was a vision impairment specialist! We quickly discovered that services in the next county over were much more comprehensive and so we moved into that county to access their program. We have moved three times related to services since our daughter was born, and the first time was just three months after her diagnosis when she was a one year old.” Jeanne Hollabaugh of Arizona told her story succinctly: “Our family lived in a small rural community in central Washington state. Needless to say, there were no deaf or hard of hearing children in our school district. I knew of one woman who was deaf who worked at the vet's office and a gentleman who was a janitor at the college. We drove over the mountains to the south for early intervention services and also over the mountains to the east for signing playgroup and speech therapy. One spring morning when our youngest son was almost two years old, I woke up knowing that we just had to move. When Eric turned three we packed up and moved to Tucson, Arizona.”
A parent who moved from Colorado sent in her family’s story. “We wanted to have access to a dedicated auditory oral/verbal preschool. We liked the idea of having services that started as early as 18 months for centerbased programs to foster socialization with other children with hearing loss and have an ability to learn strategies for deafness outside the home. We felt that although Colorado did a great job with early detection and getting intervention started quickly, they do not have the same critical mass as other metro areas around the country offering numerous programs for all modalities within each county and were not of the mind-set of anything else besides home-based therapies. For example, we had to drive and pay privately to go to an AV (auditory verbal) therapist. Because the window for children with hearing loss and acquiring language is so short, we felt it was worth a move, even if temporary. We felt that because children with hearing loss tend to lag in the pragmatic language, socialization and services in a group setting with hearing and d/hh peers were of the utmost importance to us and is something that is missing from most early intervention programs (birth to three) in Colorado. It doesn't make sense that if it’s a known deficiency, why not tailor programs to help these children bridge those gaps, develop socialization skills and help parents to learn strategies in a new setting outside the home?”
Similarly, Bill Corwin and his wife researched what instruction might best fit the needs of their firstborn daughter, who was identified with a moderate to severe hearing loss as a newborn. They were surprised to find specialists or programs focusing on developing listening and spoken language were not available in their region of California. Looking into public school options for her later schooling, they noted that there were no local specialists in developing listening and spoken language for their daughter. Their research led them to pursue employment options on the east coast in their search for quality programs, with the happy benefit of returning to live near extended family again, and moved before Sophia was a year old. While they could have stayed and advocated for more appropriate services, the couple felt the time lost in possible services at a prime time for language development was a price they could not pay, and went forward with the plan to Massachusetts. Sophia’s little sister Julia was born with a profound hearing loss a few years later. Looking back, Corwin notes that the move was difficult, “but so worth it” for the entire family
Another family did work with the school district to incorporate specialized instruction for their son who was struggling with written English. “We had been trying to have our son’s current school incorporate more cued speech into his school day. We had very civil dialogue with them. They even trained all their staff in cued speech. However, they very respectfully said that they never anticipated creating a program that used cued speech beyond a very limited basis…for spelling words, maybe for English class, but not as a major part of the entire day,” notes Candace Lindow-Davies of Minnesota. “We visited the one full cued speech program in the far southern side of the metro area (we were in the north), had our entire family attend cued speech camp that summer, and had our son attend that program for one summer. When we told our district we felt the best placement was at this school, they did not agree and refused to provide transportation. It was then we decided we needed to move. Our son’s written English was dreadfully lacking. There was no time to waste.” Her husband faced a much longer commute since he already worked further north than the previous home. “Selling our house and buying a new one was not a good financial move, probably the worst we’ve ever made, but if it meant my son would have a better education, then so be it. Six years later, he’s light years from where he once was, and his sister also got a better education as well at the new (award winning) school, “Lindow Davies relates.
Coming in as a close second for reasons to relocate was the need for more deaf/hh peers. Moving toward more of a critical mass of deaf/hh peers was cited by two families in particular. In my own family’s story, my husband was offered an incredible opportunity in a state where we had extended family and had been sad to leave before we had children. Our daughter, who had a late identified severe to profound loss, was attending a centerbased program with experienced staff, Signing Exact English as part of their simultaneous communication target, auditory skills development, terrific language activities, and tons of similar aged peers. Her language was developing quickly, though full communication took a careful, familiar listener and better yet someone who knew sign (or liked to talk about dress up clothes and shoes). While visiting preschool options in the new location, we were offered only one public choice: a brand new preschool with beautiful equipment, but sorely lacking in a language rich environment. There were no typical peers, and no similar level language peers among the variety of students attending. Our four year old would have had the best spoken language in the class, and the teacher of the deaf/hh (TODHH) would come whenever she could, we were told. I could not put my just now blossoming daughter in such an isolating class when she had over 400 signs she used meaningfully with us and far more that she understood. Maybe one person, the TODHH, might connect with her, but I knew she wouldn’t thrive there, and perhaps would even give up on human interaction while they hurried to learn more about how she ticked. We would leave an excellent program with published outcomes for … a better job in a city we dreamed of living in? It was a tough choice, but in the end, I just couldn’t make that choice but nor did my husband want to give up the job opportunity. We decided to continue at the centerbased program while Lonnie moved away, and planned to reunite near the end of the school year, since Kindergarten services looked much more promising. This temporary separation was quite difficult on all the kids, and on the marriage, with some lingering misunderstandings between us about whether we had truly made the decisions together.
For the Crawford family, trials of mainstreaming in their new district did not go well when Emma reached second and third grades, and pointed to the need to go another direction with placement. “She did much better with a teacher who could provide direct instruction in ASL, but we were concerned about the level of challenge she was receiving,” notes Crawford. “The program she was in had some wonderful staff, but the majority were hearing and not native signers. Some friends of ours had moved to Texas and their daughter attended the Texas School for the Deaf (TSD). We went to visit and started talking about moving. This was not a situation we felt we could impact through the IEP process. She was a top student at the program she attended but in the new program it was obvious her peers were quite a bit more advanced in terms of their language and ASL skills. My husband was considering a job change anyway, so we took the plunge and decided to list the house. Little did we know it would sell in ten days! I moved to Texas with the girls that spring, and Emma started attending TSD as a day student. Meanwhile, my husband Steve stayed in Michigan and tried to find a job in Texas. Six months later, Steve was finally able to join us when his company agreed to let him work from a home office in Austin. We were very fortunate that it all worked out.”
Extended family complicates a decision to move (or not to move.) “My mother was horrified we’d be moving further away and swore we’d never see each other again,” relates Lindow-Davies “Like the move wasn’t hard enough without more guilt! After we moved, we happened to find out there was a family with two deaf parents and four kids with hearing loss, one my son’s age. They are best friends and live only a mile from one another. Fate? We like to think it was meant to happen.” Crawford notes that both her girls were fairly young “and agreeable” when they moved. “There have been times, though, when my younger daughter, who is hearing, has expressed a desire to move back to our home state to be closer to family. She often asks me why we moved and I explain that one reason was to access a better school for her sister, but we also enjoy the warmer weather and my husband does have a few relatives in Texas, so it has been nice being closer to them. She recently asked me if we would move if she was having trouble in school and I explained that there are more options for her in the area where we live, but I said if we needed to of course we would!”
Corwin, who serves as the president of Clarke Schools for Hearing and Speech, with campuses in five eastern US locations, notes that every year families move to one of the campuses. He encourages families to gather as much information as they can, including attending a summer program (preschool programs are offered in the summer followed by a family weekend) to get a better feel about a campus. Of course, that can’t prepare anyone for the New England winter on the Northampton campus.
The takeaway for other families? Veteran moving parents pointed to the need for a lot of research, but realistic expectations. Special Ed directors loved on a first visit do move on or retire. Budgets change and support evident at first can dry up, so looking at the history of referendums passed by property owners in a district might help gauge general support in the community for the school. Also helpful is having parent contacts who have “been there done that” in the district or school considered, or who are actively participating in the school now, particularly in quality improvement work. Looking at the child’s needs long term, consider whether the district understands both the need for deaf/hh students to be with their peers at a centerbased program or state school, and also how to support kids with hearing loss who wish to be mainstreamed in their local school, for those priorities can change over the course of a child’s educational life.
Families also cautioned on the need to gain the support of the entire circle--siblings, both spouses, and extended family where possible. It’s tough to fly without a net, especially into an unknown territory. Consider a visit for the whole family to the new location, and take advantage of any short term solutions to try on a new program before committing. One mother says, “Surround yourself with people who can help you achieve those goals and remind you why you thought moving was important when the going gets tough.”
Some helpful resources are listed below in searching out information about the new possible location. Some state departments of education have directories of deaf/hh programs so that families can be provided with all options available in their region. Families have the right to know, per the IDEA, what those options are, even if a school district evaluates a child and finds that they can provide FAPE. (That’s Free and Appropriate Public Education, in the language of the law. See Placement determination, 300.115, and 300.116.)
Will distance learning impact the numbers of families who move for services? Corwin noted that technology can’t eradicate a lack of resources, but it is an important tool and may reduce the need for long trips to larger population centers for families with significant needs. Corwin looks forward to more options as families ask for them, especially for creative ways to meet the need of a critical mass of deaf/hh peers.
It is hard to quantify how many parents might move, or consider a move, but anecdotally, at least a third of the parents who contact us for IEP support say they would move if employment could be found elsewhere, or houses could be sold in this tight economy. We know families stay and advocate for services; we weren’t sure how many pick up their families, with all the complex issues they face, and head out to change their child’s story for the better.
Military Families
The Department of Defense Education Activity (DoDEA) is an important source of information to military families who are moving. https://www.dodea.edu//
Also, connect with the Military Hands & Voices at the H&V Military Project
QUICK LINKS
Home
