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Advocacy

Advocating for Your Special Needs Child in the School Setting

guest post by Tiffany “Tiffy”

“Look, they have some really cool binders on sale for back-to-school.” 

I can see as soon as “school” leaves my lips, my son’s demeanor changed and he has quickly shifted from a happy, joking child in Walmart playing with wooden dowels to an angry gremlin.  He does not like school, and I don’t know if he has forgotten or just hates the word “school” and all that it stands for, but we are homeschooling him and his brother this year.  

School used to be a more doable (I don’t want to say enjoyable, because he’s never enjoyed school) experience for him.  He tolerated school the best he could, and we spent so much time focused on our oldest son who is more severely impacted by Autism to notice that he was struggling as well.  His last two years of school were hard. Honestly, he only went half a year, at both the schools he attended.  

Luckily for us he was classified as a special education student by this time or we could have been facing some truancy charges.  School was hard for him. School was hard for both of our boys with Autism.  

And, if I’m being honest, school is hard on us parents as well.  

It’s a constant fight to get what you feel are proper services for your child within the school district.  You often leave IEP meetings overwhelmed, defeated, and worn down, wondering if you can even access what’s best for your child, at school.  Honest answer, you can’t.  

Schools aren’t required to give your child what’s “best” but rather what’s “appropriate.”  

And trust me, there’s a distinction.  

I am here to show you how to effectively advocate for your child to ensure that they are getting the most out of their education within the public-school system.   

First, to advocate for your child with special needs, you need to familiarize yourself with FAPE: Free and Appropriate Public Education.  

This needs to be seared into your mind, it’s one of the most important legal terms you need to know regarding your child’s time in the school system. 

Free, means just that, free.  Every eligible student with disabilities is entitled to be educated, at no cost to the parent.  

Appropriate.  This means that your child with a disability is entitled to a tailor-made educational plan that is appropriate for him.  This plan (IEP) will be designed to suit his needs. As previously stated, this does not mean “best.” I’ll explain a little later what I mean by that. 

Public.  This refers to the public education school system, which states that students with disabilities have the right to be educated in the public-school system, under public supervision.  Sometimes, a student can be educated in a private school setting if that is what is determined appropriate by their IEP team, and this placement will be covered by the school district.  

Education.  Every eligible child with disabilities must be educated according to FAPE and should ensure that they are being prepared for the future (employment, independent living, and/or higher education).  

This concludes our mini course in FAPE, and this, in addition to knowing the IEP process, is what you’ll need as the foundation of all your advocacy efforts for your child within the school system.  A short mention on “best” vs. “appropriate.”  

We all want what’s best for our child, but the schools are not required to provide what is best, but rather what is appropriate.  

For example, if your child’s IEP team determines that a particular app is necessary for your child to access the curriculum and reach his goals put forth by the team, then it is on the school to provide such an app, but it doesn’t have to be the “best” one that is out there. 

Quick story, it was determined by my son’s team that he needs a communication app on his iPad, I just figured they would put the same app that he has on his speech iPad at outside therapy on there, but they opted to go for a less expensive app that he didn’t fully understand.  

This app met our IEP goal of having a communication app, but it did not have to be the most expensive, best one out there.  What the school provided was appropriate in that it had pictures, spoke when tapped, and was customizable. It wasn’t until I collected data from his speech therapist, talked to them about the importance of familiarity with those with Autism, and showed them that he could not operate this app in the same way that they finally agreed to purchase the same app that he was using in therapy.  

It won’t always work out this way, but it’s important for you to remember that all that is appropriate, isn’t always best.  

So many parents ask me how do they advocate for their child in school? 

How do they become an advocate?  

There are classes out there that are offered by various organizations and groups that will help prepare you for advocating in the school, but there are no real requirements for being a parent-advocate for your child.  You just need to be passionate about your child’s education and willing to fight for services and accommodations you feel are necessary for your child to excel in their teachings and gain the necessary skills for the future.  

If you feel this is you, and you would like to learn more about how to effectively advocate for your child, continue reading.  

Before we get started, remember when I told you that it’s important to note that schools are not required to provide the “best” but rather “appropriate”? 

It’s also important to remember that they are not required to “maximize your child’s potential” either.

There have been several court cases to date that tell us that this is not part of the school’s responsibility.  So, remove “best” and “maximize potential” from your vocabulary, this isn’t required of the schools. This leads me into my first piece of advice for parent advocates, be informed. Seriously. 

Be informed.  There’s nothing that will hurt your case for your services for your child than you walking into an IEP ill-prepared and uninformed.  This involves you knowing your child’s rights, from FAPE (discussed earlier) to the entire IEP (individualized education plan) process.  I remember the first few IEP meetings I had, and I did so poorly in these meetings because I didn’t know only iota about FAPE, IEP, ARD, due process, etc.  

I wasted the team’s time, and ultimately, I wasted my time because I was requesting services my child wasn’t even entitled to.  Or I went about it the wrong way. It’s imperative you do not waste your time either. Being informed doesn’t just mean all the fancy acronyms that come with being special needs parent or navigating the IEP process, it also means knowing the ins and outs of your child’s condition.  

Become intimate with your child’s diagnosis (watch videos, read books, attend seminars, etc.).  Make detailed notes about how their disability affects them personally, what challenges they have, and even how best your child learns.  If you know how your child is impacted by their diagnosis, you can better advocate for targeted interventions and services that address their specific needs. 

Organize your paperwork and keep detailed notes.  This ties in with the previous tip in that you need to keep notes on your child’s strengths, challenges, interests, needs, etc.  Also, break their challenges down into little categories such as academics, socialization, behavior, communication, and so on.).  

Trust me, this will help tremendously when it comes to developing goals for your child’s IEP.  

Keep a record of any behavioral or mood changes with your child, including regression periods.  Also, keep track of all medical records that detail their diagnosis, clinical reports from psychologists, previous IEPs, and any assessments your child may have had.  

Communicate with your child.  This was a major fail on my behalf when dealing with my youngest and school.  I felt because he wasn’t as severe as my oldest that his issues weren’t as great.  He would tell us that he had issues with certain aspects of school and we just brushed them aside because he was still able to make it to school every single day, pass his schoolwork with flying colors, and was labeled as the best behaved…until one day, he wasn’t.  He was struggling and we didn’t pay attention.  

One day, it became too much and he just couldn’t handle school anymore.  If your child is able to communicate to you their feelings and needs, it’s important to have honest conversations with them about their experience with school.  Dig deeper than the typical, “how was your day?” You’re likely to end up with one-word responses. Instead, try “tell me about the best part of your day,” “what was the hardest thing you had to do today,” “who did you play with today,” or “tell me what you read today.”  

Open-ended questions for the win!  

You can use their responses to gauge what areas they are having this most difficulty in and address those during your child’s IEP meeting. 

The IEP Meeting.

Upthread, I told you that you needed to familiarize yourself with the IEP process in its entirety.  There’s so much to go over regarding IEP meetings that I will simply focus on a few things to do and/or have with you while you’re in your meeting.  Be sure to check this out for a more detailed look at the process. 

Also, before every single meeting, the school administrators should hand you a procedural booklet on the IEP process, take one.  Take two. At every single meeting, take one of these booklets, do not turn them down.  

Let’s get into it, what to do while in an IEP meeting: 

Make it real.  Too often schools will treat your child like another number, or statistic.  I mean, your child is most likely not the only child in their district with special needs and IEPs so it’s easier for them to think of these students as a group, rather than individuals.  It is up to you to make sure they know your child is a person, not simply a number or a piece of the whole.  

Bring a picture, or several photos.  

I would bring a picture of my boys and put it on the table in the center of these meetings. 

This was to remind them of who we were talking about in this meeting. The young boy in this photo was who we were coming up with a plan for.  His name is Aidan. Or Josiah. Your child is why you are all in the room at that time, make it real for them, because it is real for you.  

Scheduling.  Too often I have had administrators attempt to “pencil” in my son’s IEP meetings.  Scheduling them between two other meetings. This is unacceptable. Your meeting will take as long as it takes.  You should not be under any pressure to complete an IEP meeting in an hour or two, or any amount of time really. I have had an 11-hour IEP meeting, stretched out over two consecutive days.  It will take as long as it takes.

Request every single IEP meeting in writing, either hand deliver it, email it, or send it in the mail. This is good for your records as they have a specified amount of time to get back with you to schedule the meeting.  

Put it in writing.  In addition to requesting your IEP meeting in writing, put everything else in writing as well.  From special requests for services and accommodations to every single thing that is said during the meeting.  You need something to come back to when your memory recall is a bit off. Also, it is not uncommon for someone on the IEP team to not remember your request or not even document it properly on their own paperwork.  

Bring someone with you.  You are in a meeting surrounded by persons with fancy letters behind their names.  That can be intimidating and overwhelming. Oftentimes, you are the only one at the table who is “fighting” for your child.  Don’t rely on your child’s favorite teacher to help you out. As much as they might want to and agree with you on many matters, they still work for the district. 

Don’t go into these meeting alone.

Bring a spouse, your parents, a friends
an advocate, etc.

These persons can help keep your emotions in check, write notes for you when you are unable, and be a supportive shoulder for you to lean on when it gets tough.  Important to note: if you do bring another person to the meeting, inform the IEP team at least 24 hours prior to the meeting so that they are prepared. 

If you’re allowed to record, record the meetings.  This works so much better than taking notes (for obvious reasons).  Check with your state’s laws to see if you’re able to record your IEP meetings.  Here, in Texas, we are allowed to, but you should inform the team that you are doing so in advance, they may want to have their own recording device.  

Bring any assessments or documentation.  Bring any paperwork and assessments you have on file for your child as this will be relevant in developing your child’s IEP. 

Assess the assessor.  IEPs are built partially upon input from the parents, from the teachers, and from the results of various evaluations.  The school has their own professionals who evaluate and test your child whose results are then used to formulate the IEP.  It is imperative that you gain insight on who is offering any solutions on how best to educate your child. If they have only met with your child once or twice, that’s unacceptable.  Request that they spend more time with your child before they formulate a plan or put forth any recommendations. 

Bonus tip:  the school is not allowed to discuss budgets as a means for why they cannot provide a service.  Too often I hear from parents who will tell me “the school told me that they cannot provide this because it cost too much.”  That may very well be true, but they aren’t supposed to state as such.

Budget is not a reason to deny your child their IEP.

If it is determined by the team that they need a service that might be costly, it is up to the school to figure out how to provide this service. 

Meet Tiffany “Tiffy”

Tiffany “Tiffy” is a stay at home Autism mom blogger/advocate to two boys on the spectrum.  She is married to her best friend and together they have five cats and live in Texas.  Tiffany has a Masters Degree in Developmental Psychology from Liberty University. She started 2 Dollops of Autism to help others on a similar journey know that they are not alone, promote awareness, and inspire new advocates.  You can find her at 2dollopsofautism.com, Facebook, and Instagram.  

Related: Your step-by-step guide to rocking your child’s next IEP or 504 meeting

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  1. Jacqueline S Jones

    September 10th, 2019 at 12:09 am

    Congratulations young lady. The work you do on-line is so beneficial to others. I have learned how to interact with special needs children, what not to do and if nothing else at least be a listening ear. I pray that this blog will be beneficial for other parents who are at their whist end on what to do or not to do. Often, it is people like you that help others to the light at the end of the tunnel.

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