Although it is common knowledge that transitions are hard for most children with special needs, transitions can also be difficult for their parents, especially the transition from services in the home to services in the school.
Under the age of three years, children are cocooned in their own home with occupational therapists, speech language pathologists, service coordinators, and behavioral specialists coming in to provide a variety of necessary services. Parents often participate in the work being done with their child, are there to provide a snack or diaper change or a shoulder as needed, and have instant access to their child’s therapists to share concerns, ask questions, and learn from their expertise. In most cases, a trusting relationship develops in which parents come to rely on these therapists as coaches – and even as a support system – because the therapists know the family so well and also understand the challenges of raising a child with special needs.
As soon as the clock strikes three years, however, just like Cinderella’s beautiful ballroom gown, it all disappears and parents have to depend on the public school system to meet their child’s educational needs. Unlike Early Intervention, which has a family-centered approach, the focus of the school is solely on the needs of the child. While special education law does allow for parent training, and parents will often develop strong relationships with their child’s teachers, it is not the same as being there every single day, observing what is going on and being able to give your input and get guidance.
So what is the best way to prepare so that YOU will be ready for the transition to school?
I hate to break the news to you, but not only do you have to be an expert on your child’s disability – and his/her social, emotional, behavioral, and learning needs – but you also have to become an expert on special education law and process. This is not an easy task, but in order for you to be able to effectively advocate for your child, you have to be at least as knowledgeable (if not more so!) as everyone else at the table regarding what protections your child has and how the system works.
You also have to learn the essential skill of being persistent, while also being polite and persuasive. The fourth “P” I like to add is “powerful.” Although most parents don’t realize it, they are the most powerful members of the educational team. You are the expert on your child, you have the strongest commitment to getting her needs met, and you are the one who accepts or rejects the services. Without you, the educational team does not truly understand your child and without you, the educational team cannot move forward in educating your child. Changing your mindset from feeling that the teachers and therapists know more than you, to recognizing that you are the person leading the educational team because you are the most knowledgeable about your child, will help ensure that your voice is heard, your concerns are addressed, and your child’s needs are met. “Assertive, not aggressive” is your goal.
My favorite books about the special education advocacy process for parents are The Complete IEP Guide: How to Advocate for Your Special Ed Child by Lawrence Siegel (2011) and Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide by Pam Wright and Pete Wright (2006). In these pages, you will learn about the law while also discovering how to effectively advocate for your child.
I also recommend that you contact your state’s Parent Training Institute (find your local PTI at www.parentcenternetwork.org/parentcenterlisting.html). These nonprofit organizations are funded by the federal government to provide information and training to parents of children with disabilities. The main PTI in Massachusetts is the Federation for Children with Special Needs (www.fcsn.org) and they provide two excellent free resources for parents of children transitioning to school services: “A Parents’ Guide to Special Education in Massachusetts” and “Turning Three” workshops, teaching parents what they need to know about the transition process. Check your state’s PTI for similar resources.
Be a Detective
If you are buying a car, you don’t just walk into the lot, listen quietly to what the salesperson tells you, sign the paperwork, and drive off in your new car (at least I hope not!). You do your homework. You find out as much as you can about the vehicle you are interested in by reading Edmunds or the Kelley Blue Book, talking to other owners, and taking it for a test drive. Although the school program your child attends is far more important that the car he gets there in, the research you need to do to find out if it is the correct program is similar.
Read about the program on the school district’s web page. Scour the state Department of Education’s website for information about your city/town’s educational system. Talk to other parents by contacting the school’s special needs parents’ group (if your town does not have such a group, ask your Early Intervention coordinator if they will contact a former client who is currently in the school program. Most parents are thrilled to help other parents.) Finally, schedule a visit to view the programs that sound appropriate. Talk to the teachers, the aides, the therapists. Ask questions of the principal, the team leader, the special education director. Hang around the playground after school and introduce yourself to preschool parents and ask them about their experience. Knowledge is power, and the more you know about the existing programs in the school, the more empowered you will be when it comes time to formulate an educational plan for your child.
Get Third Opinions
The school will be doing their own set of evaluations. Your Early Intervention team will also provide reports on your child. That is not enough. If at all possible, get third opinions from outside evaluators such as a developmental-behavioral pediatrician, a psychologist, a speech language pathologist, an occupational or physical therapist, and/or behavioral specialist, depending on your child’s specific challenges. The more information you can gather about your child’s needs, the more evidence you will have to demonstrate the level of service required to meet those needs.
Although the school is not required to adopt the recommendations of outside evaluators, they are required to consider them. And having those reports can sway opinion in the educational plan meeting. If you are saying your child needs behavioral services, for example, and the Early Intervention team says the same based on their work with your child, and private evaluators concur based on their testing, it is harder for the school to say that your child doesn’t need these services.
Start the Process EARLY!
The final piece of advice I always give parents is to start the transition process as early as possible, ideally six months before your child turns three, in order for you to have the maximum amount of time to hold as many meetings as necessary to ensure that your child’s needs are fully met when he goes to school.
Special education law governs how long the evaluation process, eligibility determination, and educational plan development process is allowed to take, so beginning the process when your child is two years and six months will give you the optimal amount of time to ensure that all of the steps are taken and additional meetings can still be held if you do not agree with the proposed plan the school provides after the first meeting. If your child is already older than 30 months, do not despair. Start the process today, recognizing that time is of the essence and you will have to move more quickly in accomplishing the steps above.
So, how do you start the process? Your local PTI (described earlier) is the place to get information specific to your state. Also ask your Early Intervention provider for guidance as well. However, their specialty is providing services and not informing families of special education procedures, so be sure to check with the experts at the PTI as well.
Important: If you feel that you simply are not able to effectively advocate for your child for whatever reason, or if you are unable to get what your child needs despite your best efforts, consider getting a professional advocate. Pro bono advocates do exist, but they are in very high demand and thus, almost impossible to get. Although advocates cost far less than attorneys, the price can still seem high to many families but good professional advice is usually a one-time cost and can be a very important investment in your child’s early education. The first educational plan you develop for your child is the most important, as it sets the stage for the level of service your child will get during their preschool years, so I urge parents do whatever they have to in order to ensure that their child’s needs are met. For advocate recommendations, ask your PTI, your Early Intervention providers, and the best resource of all, other parents.
Although moving to school services from home services can be intimidating for parents, it is also very exciting and opens up a new world of learning and experiences for your child. Do your homework as outlined above, be open-minded and optimistic, and the transition can be very successful for your entire family. The clock is striking three years whether you are ready or not, so get moving today!
Bernadette Murphy Bentley, MPA, is the Autism Resource Specialist at Tufts Medical Center, the Editorial Director of the Autism Consortium’s monthly E-News, and the mother of an adolescent with ASD. Sign up for E-News by going to www.autismconsortium.org/home/newletter-archive.