10 Things to Remember When Advocating for Your Special Needs Child
BY DYAN ROBSON, AND NEXT COMES L
Photo © Soloway/123RF
Oct 19, 2017
To say my son had a difficult school year last year would be a huge understatement.
Things certainly did not go well and he struggled.
I struggled because he struggled.
Our whole family was hurting because we were all so mentally drained, as I desperately scrambled to make things better for my son at school. It was an exhausting blur of tears, sleepless nights and meltdowns.
But in the end, it seemed as if my sole purpose last year was just to learn to be the best darn advocate I could be for my son. And, if you have a special needs child like I do, then you know how important being a good advocate can be.
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A big change or a huge setback, such as the rough school year that we had, can make it really difficult to focus on the good.
So, to the special needs parent reading this, you can do this. I just want you to keep the follow things in mind when you are advocating for your child's needs.
1. You know your child best
Regardless of what the reports say or what the professionals say, you are the parent that has been by your child's side since day one. You know your child's routines and preferences. You know their quirks. You know what makes them laugh and what makes them cry. So regardless of what professionals or teachers may try to suggest or tell you, if something doesn't seem to reflect what you know of your child, then say so.
For instance, my son's teacher last year kept saying that he would ask for cuddles when he was overwhelmed and having a meltdown. The first time the teacher said this to me, I swear I must have looked possessed. I'm pretty sure my eyes rolled back as far as they could go and I scrunched up my face like a contortionist because my son has never ever been the cuddly type. He has never been known to ask for hugs. Ever. So that was just one of many red flags for us.
2. The professionals, teachers, and support staff truly want to help your child
I'm sure it doesn't alway seems like it, but if the professionals in your child's life truly like their jobs (and I hope most of them do!), then they truly do have your child's best interests at heart. They really do want to help your child. So remind yourself that they are there to work together with you. They aren't your enemy.
3. You have to speak up for your child if they are unable
This tip is especially important if your child is nonverbal and/or unable to effectively communicate their needs. Since you know your child best, it is important for you to relay the information that is going to truly help your child thrive, grow, and develop.
4. Always focus on your child's strengths
Oftentimes, meetings and reports focus on the negatives: The things your child really struggles with, or cannot do. Yes, those weaknesses are important to highlight, but after reading page after page of these weaknesses, it gets a bit depressing. Trust me.
Instead, pair those weaknesses with a strength or at least rephrase those weaknesses to be more positive sounding. For instance, your child may struggle with fine motor skills, but shows an eagerness to try cutting with scissors. Rephrasing that weakness to focus on the positive may seem like a small, insignificant change, but it really does make a huge difference.
5. Keep communication open between yourself, your child, and your child's support team
This tip is so important! I cannot stress this enough. If things are not going well, then speak up. Talk directly with the teachers or professionals and voice your concerns. Be involved and see what's going on yourself. Ask them questions. Keep them engaged and most importantly, stay on top of them to make sure your child's needs are always being met as best as they can.
6. Embrace your child's uniqueness
This tip may seem a bit unexpected, but I do think it is important. You need to remind yourself about what makes your child unique and what you love most about your child. Then use that love to push for the supports and accommodations that your child needs. You need to remind yourself what all this advocating is for!
7. Use your child's interests to your advantage
When we struggled to get my son to even step foot into the school last year, I used his love of the game Rush Hour to encourage him in the door. Turns out, the principal at his school had a copy of the game in his office. So we worked together to incorporate a few matches of Rush Hour in his office into my son's morning routine, until my son was ready and willing to join his classmates in their classroom.
The bottom line is keep your child's interests in mind even when you are working together with the school to create an education plan for your child.
8. Advocating is hard work and tiring
From signing papers to meetings and phone calls, advocating for your child is hard and exhausting. I am not going to deny that.
I cannot count the number of hours of sleep I lost last year from worrying about what we could do to help my son. Sometimes you have to really fight to get your child's needs met. You need to mentally prepare yourself for an uphill battle some days, but you can do it!
9. Educate, educate, educate!
In order to best advocate for your child's needs, education is important. Not only do you constantly need to be educating others about your child and his/her needs (especially if the diagnosis is unfamiliar to most people), you also need to stay up to date on educating yourself. Read about your child's diagnosis. Research different therapies. Connect with other people with the diagnosis or with other parents to get support and help. The best way to advocate for your child is to educate yourself and those around you.
10. Don't lose yourself in the advocacy process
This one’s a biggie.
Self-care is something most mothers struggle with, especially special needs mothers. But if you don't take time to take care of yourself, you will burn yourself out. You will be completely stressed out.
Unfortunately, that is where I ended up during the disaster of a school year last year. Sleep evaded me. I even forgot to eat lunch some days or if I did, it was certainly far from healthy. I spent less time on myself and my hobbies.
I lost myself.
I basically vibrated from stress and it was not healthy at all.
So please, special needs parents, make yourself a priority too. Take a break when you need it. You'll become a better advocate and parent if you do. I promise.