Navigating Special Education - How to Create A Winning Situation for Your Child
May 10 '07
The Bottom Line Special Education can be challenging to put in place but it can provide tremendous benefits to the child and the family.
I have a child with Asperger's Syndrome, a form of Autism. She has been my challenge and my joy. Probably the most difficult thing I face with my daughter's disability has nothing to do with my daughter. It is the annual drafting and negotiating of her Individualized Education Plan with the local public school.
I live in Massachusetts where we refer to an Individualized Education Plan as an "IEP" although this terminology varies by state. I would urge anyone who is negotiating an IEP to read up on local state law, federal law and understand the legal terminology. There are lots of good books out there that give you an idea of what your rights are. This essay isn't based on law - instead I would like to relay my experience in negotiating my daughter's annual IEP with her IEP team.
In our state, the IEP is put into place each year - for us this occurs in the Spring. This is a good time to negotiate an IEP because you can evaluate what went right and what went wrong in the last year and adjust the IEP services accordingly.
It is also important to realize that every child grows and matures from year to year. For example, my daughter has recently been more aware that she has an aide with her and that makes her different from her peers. Now that she is 11, she wants the aide to back off a bit. This is something I was able to talk about with the team and put in place. Each year, you should ask yourself what needs to be adjusted in your child's services to consider how much they have grown in the last year.
One of the hardest parts of navigating the IEP process is finding out what services are available. Our school, like most schools, doesn't offer a list of the services they provide and privacy laws prevent them from telling you who the other children are that are similar to your child. Therefore, you can't easily locate other parents to find out what is working for their child. Unfortunately, this creates a situation where finding information about the services available requires you to be a private detective. I joined a parent's group of local parents with kids on the autism spectrum. We share information and IEPs and even have been able to negotiate better services for our kids by pooling our efforts. One of the best things you can do for yourself and your child is to go into the IEP meeting knowing what services are available and what services are not available so you know what to ask for.
Another difficult thing is to determine who should be on the IEP team. My daughter's IEP team has grown over the years. It always includes her classroom teacher and her classroom aide. Additionally, our school has an Inclusion Facilitator that works with all kids that have IEPs and she attends the meetings. Because my daughter's needs vary, her team also include a Social Worker, Occupational Therapist and Speech Therapist. In the last year, I have asked the Principal to attend IEP meetings although she doesn't always do it.
What has been more of a challenge is getting outside consultations into my daughter's IEP meetings. Unfortunately, autism is complex and the school staff does not always have the expertise to address some more perplexing behaviors. Last year, I added to my daughter's IEP plan that we include a behavioral consultant that specializes in Autism. This was to help create a plan so my daughter could better regulate herself in the classroom. Don't be afraid to request outside specialists if they don't exist in your school system. Sometimes one person with expertise is worth more than lots of well-meaning people who aren't quite sure what to do.
The last thing I want to talk about is the negotiation process. I always get the IEP in advance of the meeting with the full team. The meetings I attend are usually held to one hour so it is important to make a list of the most important issues and keep moving through them. It is easy to get side-tracked on one emotional issue and lose track of other issues that are more important.
My hardest piece of advice to give and to follow is to stay calm and focused at the meeting. It is daunting when you are the only parent in the room and the "school" is represented by many people. It is also difficult sometimes to stay calm as the group dissects your child's behavior. After all, it is your child and every parent is going to go through a lot of difficult emotions talking about the needs their child has. However, I find there is usually no point in yelling. I have had one situation where I threatened legal action but that is the subject of another long essay and only came after I had consulted with a lawyer and made sure my threat was valid.
Some parents hire consultants or advocates to attend meetings with them. I think this can work for some parents and is a good idea for parents that want support when they attend meetings. I have talked to consultants but I find that I have done a pretty good job over time negotiating the IEP and haven't need outside help.
At the end of the meeting, know that you, as the parent, can reject the IEP. You don't have to sign. You can reject it in part or reject it in total. If things have become difficult for your child and they are not thriving in school and you can't get the services you think are appropriate - don't sign the IEP!! This is the time you have to consider an advocate, consultant or even a lawyer. You do have rights in the process and don't let anyone tell you otherwise.
So, after several years, those are my few words of wisdom and advice. My daughter has had her ups and downs although we all do so that is to be expected. I give all parents that have kids with special needs a little extra kudos - it is a tough road to travel but there are lots of wonderful joys along the way.
This is a special review for me. This is my 500th review written on Epinions. I am dedicating to my daughter - who faces unique challenges in life and rises to meet them with admirable courage and humor. She is my role model in every way. This is also an entry into MaryTara's write off for Autism. I could urge everyone who reads this to donate to an Autism cause. But I would like to make my request a little more personal. Autism is pervasive in our world. You probably know a family that has to adapt to a child with Autism. We have treasured every act of kindness shown to our family and every instance of acceptance. I would urge anyone who reads this to show a little extra understanding and love to an Autistic child that has to live in a world that is perplexing and unforgiving. Love makes the world go around.
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