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What every parent of a special needs kid needs to think about before the new school year

The beginning of a new school year always has me giddy with visions of twirling in my front yard after the bus departs, and the other two have safely walked into school. And this year, the twins will be in a program too, which will give me time to myself for the first time ever. On the surface it seems like the promise land is within grasp.

But for special needs kids, there is a lot more to a new school year than supply lists and new shoes. This is the time we, as parents need to plug in and buckle down because there is a lot of work to do. The responsibility of their education falls on us. We are the ones that have to make sure that their IEP is being followed and we are the ones that have to pick up the pieces when schools fail. We are the one entity that can make or break a school experience and it is a big job. 

So, I  compiled a list of back to school musts for any parent of a special needs child that I wish I had eight years ago when #1 was diagnosed.

Introduce your child. Sit yourself down at the computer and write a summary of you child. Write what their likes are, dislikes, favorite movies, shows, toys, etc. Your job is to describe your child as accurately as possible. You must include triggers, behaviors, best strategies for redirection and how to navigate out of a meltdown. The more concise you are, the better prepared that teacher is going to be and they will be glad you gave them a "heads-up." It is really hard to assess the essence of a child based on their IEP alone. This summary helps complete the picture. Also, if they have any friends, let them know who they are, so they can help foster those relationships.

Review their IEP. Read that baby cover to cover. Make sure that you have a firm understanding of what is in it. Do they have a behavioral plan? Do they need a behavioral plan? Do they have certain accommodations? Do you think some need to be added? Is it the most accurate document that describes all their skills and goals?

What are their goals? An IEP is goal driven. Which means the goals need to be age appropriate, combining life skills and educational goals. They should have goals for every subject with reasonable objectives. For example:  If you have a child with speech therapy, than an appropriate goal would be: "Articulation-to increase speech intelligibility by following articulation skills." An Articulation objective example would be: "Given 10 stimulus items, with faded visual cues and verbal prompts, he will correctly produce the voiced and voiceless /th/ sound in multi-sentence tasks and during oral reading. With 80% accuracy." I know it sounds like a lot, but if you're not sure about goals, just Google "appropriate IEP goals for 4th grader" and you'll find a bunch. Also talk to your friends and you can always send me a message.

One of the biggest flaws in an IEP is having goals that are too easy. An IEP team can come back to you reporting massive success and may try to take away their IEP. You want goals to be on-going and updated based on their age. This is the time to challenge them. If an average 10 year old can talk about a topic for 10 exchanges, having a goal for five exchanges may be a reasonable goal. It may take all year, but it is reasonable. In my experience, I have met many OT and Speech providers that don't want to push a kid because it will cause behaviors. That is not a way to approach therapy and it teaches a kid that behaviors will get you out of stuff you don't want to do. If you are lucky to have great service providers who understand how to push your child just enough to avoid a meltdown, then you have a gem and tell them so.

Facilitated Peer interaction. This is a MUST for kids with ASD. Whether it is lunch bunch, adaptive gym with a typical peer, or speech with a NT peer, they are all beneficial.

Communication is key. Before school starts, send an email to their teacher and introduce yourself. send the summary you completed and let them know what is important. Tell them the best ways your child learns and how assignments have been broken down in the past. Let them know that if they have any questions or quandaries that you are available to  help.  Opening that channel is very important. I know sometimes, we get a teacher who is closed to change and thinks that 20 plus years in the field makes them immune to compromise, that is the time you put on your armor and get the Assistant Principal involved. And if they are antiquated too, just keep going up the chain of command until you meet someone that will listen and help. 

Know your kid's shortcomings. We discovered that most of #2's issues came during unstructured time, like lunch and recess. Two things that lacked structure and consistency. Because he was left to his own devices and didn't have facilitated interaction, he fell into the rut of an attention seeker; negative attention is easier to get than positive, and he became more of a nuisance to other  kids than a friend. Instead of accepting that, we asked for lunch bunch and facilitated interactions. It did help and he learned that he didn't have to chase the kids around the  playground to get them to interact with him. 

Volunteer if you can. Nothing gives you a better perspective on their day at school than being there. I find that coming in for parties and events a few times a year lets me gauge things. Plus, his NT classmates are usually very excited to tell me stories or things about #1. With #3, I helped out in the classroom and the lunch room enough to make goal adjustments, suggest redirection techniques and fight for an aide. 

Be clear, crystal clear of what your expectations are.  I told #1's mainstream teachers that he needed to be held accountable for things and not given a pass just because of his Autism. He needed to be pushed and challenged and if it caused some behavior, so be it. He needed to learn the material just like his NT classmates. They looked a bit surprised, but he rose to the challenge with a ton of help from me.  I asked them for 10 days notice before an exam (a Wednesday email for a test the following Friday) and an outline of material being tested because it takes that long for him to get things into his head.  Also, ask their mainstream teachers for copies of the non-modified exams so you can see how the exam was modified, even if you have to send them back or come into the classroom to view them. This is really good for determining how far behind grade level they are and if they are.

The importance of carry-over. Knowing what they do at school academically makes it easier to help them with trouble areas. Making them accountable for behaviors at school by rewarding or taking away things at home, ie computer time, movies, DS games, Lego, etc, helps with consistency. With the boys, we have a behavior chart that comes home. If they have a certain number of smiley faces, then we place a sticker on the chart at home to earn a prize at the end of the week, or they can bank them for bigger stuff.

Know the other moms.  This is a must in a special education class. If you have an issue with some aspect of school; class size, lack of aides, unforgiving general educators, etc, chances are another parent does too. Forging an alliance with other moms makes it easier to address concerns that affect everyone. While we were still in NJ, we were the only parents fighting for stuff. The rest of the moms just sat back and complained. And when it got better because of us, they were like, "we're so happy OT is working with the kids in the classroom" I had to remind them that it was because of us that it happened. Imagine the power that a collective group has to change things and that is why it is essential. And, you just might get a friend out of the deal too.

Be nice. I realize that it is common sense, but when you are frustrated, it is hard to be nice when all you feel like doing is punching people in the face. Teachers have an average of 17-28 students and sometimes they get don't get back to an email, address a situation or see things the same way you do and sometimes things fall through the cracks. Don't take it as a personal affront if you're not answered in the speed you want. People are more responsive when they feel compassion and respect. Your emergency is not theirs, no matter what you feel. Explain calmly, ask for what you want concisely and be patient. Teachers don't want your kid to fail anymore than you do.

Never stop. It may be easy to sit back and relax if things seem to be going well, but that is the time when little problems become big problems. Stay plugged in and connected and mole hills will never become mountains.

Celebrate: Every little improvement is cause for a celebration. Celebrate that "A" every time. Praise them for doing well and praise them for pushing through an assignment even though they hated it. You have the power to teach them to be proud of good work, so use it. And then pat yourself on the back too, because their victory is your victory.

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