RESOURCES & CHALLENGES
Ithaca is wonderful in offering individual services. Our child's privacy is protected. But, as a result, we are not very organized around autism spectrum disorders, although things are definitely picking up recently. Last I knew, the health department here in Ithaca did not have reliable figures on how many children are on the autism spectrum. Due to privacy laws, it is difficult even to know what other children in our school are on the spectrum. So advocacy is a real challenge. We work through ephemeral parent groups, and key organizations--Early Intervention, the Rackers Centers, and the subtle ways that our teams help our children to make contact.
In Ithaca, your ASD child has relatively few educational options in terms of schooling. As someone put it, you are entering a marriage with no possibility of divorce. Unless you enjoy conflict, and some people don't mind it, it is important to develop a team that will steadily work in the best interests of your child in a highly constructive way. Remember--your child may be eligible for services until age 22. It is going to be a long relationship if you are an Ithacan. The Wrightslaw site (www.wrightslaw.com) can help you set the right tone from the outset, and their seminars, while slick, are packed with information and will help you avoid common pitfalls. They have advice on everything from the law to writing effective letters to analysing your child's IEP even when you have no idea what is going on. They also publish a very useful printing of the education law, paired with a book, Emotions to Advocacy, to help you interpret the law.
What is a team?
On this site, I mention a team as if it were an item that came with the package of getting services. It is actually something a parent or caregiver of someone on the autism spectrum needs to build and respect. During the period of Early Intervention, the family of a small child gets quite a bit of support in accepting a diagnosis and working with the all of the services needed to identify and address the child's needs. Once a child moves to the School District, the focus is on the child within the school system. Parents/guardians receive little direct guidance or support outside of the child's program, yet they must also take over the role of understanding and managing the overall picture and become a member of the education-focused team established by the school district. So, for example, the school and/or district coordinates periodic meetings of the teacher, aide, speech therapist, occupational therapist, adaptive PE teacher, and social worker --and you are part of that team.
If you have services outside of the school setting, you plan a key role in coordinating the overall picture. This can be overwhelming, so the Franziska Racker Centers offers service coordinators to thos children elible for Medicaid. This arrangement still requires awareness and effort on your part, but the service coordinator can be part of your team meetings with the school district. You are also an important advocate for your school team within the school system, just as the team members are powerful advocates for your child. Keeping a stable team is not always possible, so helping new members of the team to get to know your child and the dynamics of the team is another important parental responsibility.
Generally speaking, it is in your best interests to keep your team working in a positive, cooperative fashion--this is not the group with whom you want to develop an adversarial relationship, nor do you want to be a non-participant. However, many parents have expressed in the parent groups that teachers and team members do not appear to feel free to discuss potentially beneficial therapies or services that the school or district does not offer (training workshops, or homework club, for example, in some of the schools) or about which there may be a lack of consensus (mainstreaming approaches are a big one.)
If you feel your child is not receiving what is due under the law, this is a challenging time for you and your team. You need to figure out what your child needs, get the evidence required (that it is a research-based approach,that your child has regressed, etc.) It IS possible to seek resolution while keeping a constructive set of relationships within your team--they may even be supportive of your efforts, even if they can't always tell you that they are. If you are in this situation, the many groups mentioned on this website can help you navigate--Michael Friga's consulting group, the Rackers Centers, WrightsLaw, and educational lawyers, and autism support groups. In my own experience, we have had some challenges, but we have been active parents, have respected the views of our team members and--at the 9 year mark--feel greatly appreciative of the support our son receives for his education. We are always urged from many directions to set higher expectations, to do more, to be more.....but that is the struggle for all parents: just to figure out what on earth that means, let alone do it!
Early Intervention
Early Intervention is a program sponsored through the Tompkins County Department of Health for early identification and treatment of children ages 0-4. See http://www.co.tompkins.ny.us/health/cscn/index.htm. We were referred by our son's experienced daycare provider. While we were shocked, we knew something was different about him and Early Intervention provided an evaluation in our home with a nurse to guide us and explain what what happening.
Once the team determined that our child was eligible for Early Intervention services for specific delays (no overarching diagnosis was provided), slowly, imperfectly, but steadily, a wide range of services began from occupational therapy to speech therapy to play therapy. The nurse guided our entire family through the process of screening and adjusting to the impact of a diagnosis of a developmental disability. In addition to the nurse's guidance and coordination of his specialists, we attended various parent information sessions at the Racker Centers, were informed about a parents' group, and were advised on making the transition to working with the school district. The nurse was quite frank that we would not get the same TLC with the ICSD. That early guidance, in the emotional period of receiving the diagnosis of autism, was as valuable to us as the early therapies were to our son.
The only advice I got from Early Intervention that did not prove to be realistic was not to change my life or my expectations for it--just keep going and bring our son along. As someone with a complex career and significant responsibilities to others in that position, this ultimately was not possible. My life became overwhelmed. Autism, if it is new to you, requires a new way of seeing the world. While it is said to be unhealthy to over-research autism, it is also crucial to become an expert on your child. Make space in your life for this event.... and the paperwork, appointments, diagnoses, assessments, and follow ups, not to mention the child's special and regular needs--we got many calls from daycare. It is probably more realistic to look at the next five years and figure out how to make as much space in it for the demands of daily life as possible. One parent probably needs to stop working or work part time. It has been difficult, in my experience, to be the mother working full-time with Dad working part-time. As open as Ithaca is to diverse family arrangements, there are still high expectations of Mom.
At this age, The Franziska Rackers Centers is the best resource around.www.rackercenters.org.
Elementary School
The first years (4+)
After age 4, children with special needs are referred to the School District for evaluation. At this point, the focus is on the child and not on the welfare of the family as a whole, so the process of diagnosis and learning to advocate for your child becomes more difficult. Parents/guardians (and selected family members) become part of a team (see above), and Ithaca is quite good about parents' role on the team if you take the time to become an informed expert on your child's autism, show up for meetings faithfully, and advocate not just for your child and your wishes, but the needs of your child's support team.
Your child's services after age four are frequently administered in the schools and daycares. Even if you would like to keep a child with high-functioning autism at home, give careful thought to a pre-K program. Public school classes start small and grow steadily between pre-K and first grade, often going from less than 12 to over 20 in that time. This is true of Montessori as well--it is very hard to locate a school with low class numbers in this area, even in private schools. If it looks as though your child will be mainstreamed it can help to start when the numbers are low and the adult:ratio higher.
The School District has been developing a variety of programs for children on the autism spectrum, in addition to its two special education classrooms, in which children with a range of developmental delays are served. An autism classroom is available at Beverly J. Martin Elementary School with a special ed teacher, a speech therapist, part-time occupational therapist, and aides. Further information and a video is at: http://www.icsdbond2007.com/pap.html
This program serves children who are not ready for mainstreaming in a regular classroom, but who can benefit from part-time participation in classrooms, as well as other aspects of life at the elementary school. Typical peers come into the classroom for programs, as well.
The South Hill School has a pre-K room that is mixed typical and special needs kids: the teacher, who is certified in special education, offers a typical curriculum and receives assistance from aides to work with the special needs children. There is also a kindergarten class. There are similar programs at other schools, as funds permit.
High functioning children on the spectrum with strong cognitive abilities are at some risk of falling through the cracks in Ithaca. Placed in the general special education classrooms, our children are as likely to model problematic behavior from the children with emotional challenges as with typical peers, and those with strong cognitive skills preclude placement in classrooms with children who are socially more able but with cognitive impairments, such as Down's Syndrome. As a parent, you need to visit all of the programs and work with the advice of your team to identify the best option. For many it is either the autism classroom at Beverly Martin or mainstreaming in a regular classroom with a 1:1 aide, which is neither easy to get or maintain, but if it is the most appropriate placement in the least restrictive environment, get started on the paperwork and be assertive.
Resources are also available from the Franziska Racker Centers, particularly for younger children in need of special schooling environments. In my experience, it is not always easy to figure out how to navigate the other services available to your child, and it is also not easy to figure out where to go for what at the Racker Center, despite an apparently clear website. Some of their programs are attached to Medicaid funding, others are not. If you not in the fields of special education or health care, the language and acronyms are unfamiliar, and the sequence of forms and approval for the multiple services your child needs are bewildering. However, if you stay with it and reach the right people, there are very helpful people, resources and support. The Franziska Racker Centers can also help with a service coordinator if your child has multiple issues and it all becomes too much either financially or logistically.
Finally, it is possible to move around the elementary schools of the district to get your children into the best situation for his or her particular needs. It takes assertiveness and good team work, but if your child is not thriving, such moves are quite possible.
Junior High/Middle School
In the fifth grade, your team will be concerned by mid-year about the transition to Junior High, which is from grades 6-8 in Ithaca. The public school choices are the Dewitt or Boynton Middle Schools, or the Lehman Alternative Community School. The latter is especially popular with special needs kids because it is a school that values "difference" and focuses on learning from one's strengths. But students apply and are selected by lottery, so a place can be difficult to get. I have heard good things about the Elizabeth Clune Montessori School at the junior high school level if your child has had prior experience with the Montessori system, but it seems difficult if your child is entering for the first time.
In addition to the usual issues of mainstreaming academically, there are new challenges to junior high, such as changing classrooms each period, loud bells, needing to change in a lockeroom into gym gear quickly, and, of course, all the social challenges of adolescence.
Homeschooling
Homeschooling is also supported here in Ithaca. Hillary Sharp, who homeschools her first grader, writes:
Home schooling is a good option for some children on the spectrum, but it is not for everyone and it will not "fix" one's child. It can be hard, frustrating and overwhelming. On the other hand it can be very rewarding and be a great way to give one's child the love and support they need to be successful. We are members of the local Christian home school organization, Ithaca LEAH. The group is very supportive of families with special needs children (not just autism) and we have a number of families who home school their autistic children. Our group has a variety of activities to which all members are welcomed. My son has participated in classes, skating, bowling and other events. If anyone would like to know more about Ithaca LEAH, they can contact me, Hilary Sharp, and I will be happy to talk with them. [[Write to suggestions@autismithaca.org below and I will forward your letter on...]]
The other home school group in Ithaca is secular, FUN (Fingerlakes unschooling network). I know that they also are welcoming and supportive of special needs children. They have events and many member families participate in the North Lights Learning center for classes. I am not a member and have as yet not participated in their classes.
Cornell, the Science Center, the Museum of the Earth, and other local groups have activities for homeschooled children. Try the Lost Lady Bug Project, for example!
CCMR: http://www.ccmr.cornell.edu/education/k12/homeschool.html
Northern Lights: http://www.northernlightlearning.org/?page_id=4.
http://robtut.blogspot.com/2007/01/homeschooling-controversial.html
Extracurricular Programs (Social Skill groups, Tutoring, etc)
The Franzicka Racker Centers offer a periodic social skills group for younger children (6-9). Michael Friga offers social skills training for Middle School students (see the home page).
Tutoring:
Some of the schools have homework clubs with tutoring provided, but other schools are reliant on raising funds to make this possible or do not offer them at all. The volunteer programs at Cornell and Ithaca College have tutors available, and we have met tutors in one of the rooms of the public library.
SUMMER CAMPS AND PROGRAMS
There are presently no summer day camps in the Ithaca area specifically addressing the issues of children on the autism spectrum. Summer school is highly recommended for ASD students, who might otherwise regress over the summer.
Summer School
The ICSD has two kinds of summer school. The first is regular summer school for all children who need additional academic instruction over the summer. If your child has a 9 month IEP, no services are available as they are during the year, so this program only works if your child can be in a regular classroom without an aide.
The second is the special education summer program. For this your child needs a 12 month IEP. If your child needs to be with typical peers, this may not be the best program for the summer.
Each year is different, depending on resources. Over the last few years, several children attended a class in the regular program and a special ed teacher was made available but we have been warned annually not to expect this in the future. Somehow each year the kids needing aides who have 9 month IEPs have made it through summer school, so do not be deterred.
Summer Camp
Summer camp is basically similar--if your child can manage without an aide, there are some terrific camps addressing the specific interests often popular with kids on the spectrum. However, there are, as yet, no social skills camps or other programs specifically designed for kids on the autism spectrum to address executive function issues. If your child is eligible for someone to accompany your child, through the Racker Centers programming, regular camps may be possible.
Here are some reasonable options short of the ideal:
The Ithaca Youth Bureau has a special needs summer camp program for children with significant impairments. They also have an inclusion program that provides 1:1 aides (usually college students, sometimes in special ed) in their regular camps at Cass Park and Stewart Park. Sign up as soon as the flyer comes out in the spring--we waited until May and were waitlisted. We did the Cass Park mainstreaming program for three summers. The rink is noisy for children with sensory issues, and the concept of mainstreaming works best if you have a child who can manage sports, theater productions, and the indoor noise of the rink. That said, the aides can keep their children out of the activities in a quieter part of the camp as necessary. After age 8, children attend Stewart Park Camp, which has a different range of activities. There is no specific programming around special needs; however, it is a very reasonable option and can coordinate well (buses provided) with the summer school program.
On our wish list is a summer program that does some intensive work to prepare for the school year: study skills (addressing that mysterious term "executive function deficits'), social skills (taking "Second Step" to that very necessary next level for autistic kids), and a physical education program that addresses the motor skill issues so common to ASD kids, like learning to run purposefully, getting through the rules and skills of sports in a way that is fun, overcome sensory issues around getting in a pool, etc. Some kids need work on oppositional behavior, dealing with frustration, etc. in order to be eligible to participate in the community's regular programming. Our son was unable to attend a perfect summer academic program for Asperger Syndrome out in Buffalo one year because he needed more work on dealing with frustration.
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