Special Education Parent Skill Set

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Sitting in the waiting room at one of my kids' therapy appointments, I met a mom who is just starting her special education journey. Our conversation made me realize that being a special education parent you evolve a certain skill set. With practice you get good at some things that may not come naturally to you and are not taught. Most of us learn this by trial and error.

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Communication - Once you are a special needs parent it is important to communicate what your child needs and to advocate for them. You are going to have to communicate with lots of different professionals. Make sure you understand what they are telling you and ask lots of questions. Also make sure they understand what you are telling them. I send a getting to know you letter to my children's educators every year. This year I also discovered it was helpful to share that information with the transportation staff too.

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Ask for what you need - If your child needs something, the sad truth is you are going to have to ask for it. There may be offers for help here and there but if your child or family needs something from a school district, or the local government you most certainly have to ask. The honest truth is that's how they keep their costs down. They sometimes can't help you UNTIL you ask, so ask.

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Hold the professionals accountable- If you don't understand what is going on with your child at school ask for some explanation. Once your child is labeled and designated special needs you get either an IEP or a 504. As a parent of a child with an IEP you can call a meeting to discuss their services at any time of year. If the school district withholds information or services, remind them of your rights. Wrightslaw.com is a great resource for what you can legally advocate for and what you should expect from the professionals serving your child.

Persistence -  Sometimes you will have to ask more than once, or someone will have a bad attitude when you deal with them, and you need to devise a work around. You will have to continue to advocate for your child even in the face of an adversarial attitude and ignorance. Keep trying and keep looking for a solution or resolution. Resources are limited and sometimes they count on you giving up. Don't give up.

Problem solving- I have been a noodler since I was a kid, so problems solving and puzzling out solutions is a natural state for me. Sometimes the problems are bigger than your abilities or experience. Look for solutions in other places if you are not getting what you need from your local school district. Ask for help from local advocacy agencies like your local autism society or your local version of PACER.  I home schooled my son with K-12.com last year when his transition to middle school failed. I also pulled my daughter from the school district when they targeted her autism program for elimination. Even though her school placement last year was far from ideal, it positioned us to be one of the first families to attend the new autism school in the special education district that serves the northern suburbs of our area.

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Pick your battles/Know when to cut your losses-If the school district has decided that all special education students belong in the general student population no matter what their needs, there isn't much you can do about it besides a lawsuit. That takes time, (which you don't have since your child's development is at stake,) and money. You may be able to win a legal battle, but sometimes its just best to look for your solution somewhere else. I am not saying not to go through the steps of advocacy. Talk to your school board, the special education department, even your local newspaper. But sometimes you cannot change the tide and you need to devote your energies elsewhere.

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Networking - Look for other parents either online or in your school district. Having a special needs child can be isolating. There usually aren't enough of us concentrated into our neighborhoods and with enough free time to form a local support group. You may be lucky and get someone from the school district to host a monthly support meeting. You should look to see if there is a special education advisory council in your school district and join. This is where you will get the information of what the school district plans are for special education in the coming months or years.
The online special needs community is there for you 24/7 or at least as often as some of us can get to a computer. There are Facebook pages and groups, as well as lots of blogs to follow (Snagglebox has been one of my favorites.) You may be overwhelmed by all the information available about your child's diagnosis at first, but with time you will find your trusted information sources. The Thinking Person's Guide to Autism, Autism with a side of Fries,  and Shut Up About Your Perfect Kid are some examples of my favorite special needs communities online.

Writing an Effective E-mail to School

As much as you would like to, do not send this:

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There comes a time when you are going to have to communicate your concern or displeasure to the school. There are a few things you will want to cover in your missive. 
I have had to write several and will share with you some examples to show you what to try to achieve.

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Dear Ms. M and Mr. A,

I am writing to articulate my preferences for Sensi's placement for Kindergarten. I understand the district wants to keep children in their transportation area for school placement. My concern is that decision is made by transportation considerations alone. I am very willing to transport Sensi to her school rather than leave the school placement decision to transportation concerns.

Sensi has to be placed in a program that has mainstreaming as part of its framework. Her IEP states that she will be mainstreamed for at least an hour of each school day, and up to 2 and a half hours, with the understanding that when she is ready for more mainstream classroom time we will call an IEP meeting.  I want to make sure that is a positive experience for her so we don't see any regression in her skills. To do that she needs to attend a school that has a proven plan for mainstreaming children with autism. The Autism Program has shown me that they have that plan.

My next concern is about technology. I feel as if the program at Neighborhood Elementary was less than enthusiastic about using Sensi's iPad with her in class. In comparison, the positive feedback I got from the teacher at the Autism Program was that using the Proloquo2Go program would not be a problem.

I hope that my articulating my concerns and needs for Sensi will help  you make the best decision for Sensi's Kindergarten experience.

Sincerely,

Savvy Advocate Mom 

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Dear Mr. B and Ms. J,
It has come to my attention that you did not warn The Autism Program that there would be a fire drill last Thursday, Oct. 4, 2012. I want you to know that it is very detrimental to The Autism Program students not to give them advance warning of these drills. My child in particular has had AIT (Auditory Integration Training,) therapy this last summer. She needs to have her hearing protected after having this expensive, intensive listening training. She is supposed to have her hearing protected from extremely loud sounds for the next year. She is not allowed to attend movies in theaters, wear music ear buds or music headphones. I have alerted her IEP team to this situation, but they cannot be expected to protect her hearing without any warning of alarms. They have noise dampening earphones in the classroom to protect the children's ears, but they must know ahead of time to put them on the children before an alarm to have the protective effect.
I am asking you to please alert The Autism Program, and Ms. W.T. in particular about any planned fire drills, tornado drills or other alarms that will be scheduled during this school year to protect my daughter's hearing and progress she has made from doing AIT therapy.

Sincerely,
Savvy Advocate Mom
Parent/Advocate

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Honestly, I think I did a better job in the first letter, because I gave myself more time to think and plan. The second one only took me about an hour from start to my second draft. The first one I think I may have done at least three drafts.
It is important to state clearly what your concern is, what you want done and how you think that can be accomplished. Be sure to state what you are willing to do as well as any other outstanding circumstances that effect the situation.  It is a good idea to include dates and other specifics as well. Make sure not to blame any one person for a short coming if that is not the case. Even though I felt that the teacher at my neighborhood special ed program was lacking, I did not lead with that, rather I used it a almost an afterthought. The bigger issue of mainstreaming, which was a programming/structural problem that needed to be addressed. State how your wishes are supported by the IEP or 504 plan you have for your child. Make sure they know how to contact you and also know who is the next person up the chain to contact if you are not satisfied with the result from you communication. You must to follow up later if you don't hear from the addressee in a timely manner. The follow up letter can be addressed to the original addressee and their superior.

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For more information on writing an effective letter, including taking time to cool off, and making your first try a DRAFT, follow this link:
 http://www.wrightslaw.com/advoc/articles/12rules_letters.htm