Ten Tips for Becoming an Advocate for Your Child With Special Needs

When you are the parent of a child with special needs, there are many things to learn about- the diagnosis, medical equipment (if needed) or adaptive equipment, diets, etc. One of the best things you can learn is how to become an advocate for your child. I can’t stress the importance of this enough.

It can be super scary to speak up sometimes, but your child needs you to say what they sometimes can not- there are many factors that can keep a child from speaking up from their needs- speech and/or language delays, slow processing speed, anxiety, and so on. Being an advocate for your child can make you a stronger parent.

Parent and child

Julian’s Path to Awesomeness

Julian had a 504 plan almost immediately after starting kindergarten. His diagnosis came a couple of months later- severe ADHD, combined and autism.

It was a LOT. There is a post dedicated to finding out about the diagnosis, Looking at the Bright Side

The 504 plan worked- it took until 4th grade to get him an IEP. Why? Somehow, Julian’s issues didn’t really affect his work, but it did socially.

The IEP finally got put into place when he started 5th grade. His 4th-grade teacher (who has since become a friend and neighbor) submitted a ton of data to help the process.

Julian is in 8th grade and working on the transition to high school. According to Kentucky guidelines, he can attend meetings when he’s 14, which will be in July, or in 8th grade. My heart broke a little during the transition part of the meeting.

He makes good grades but still struggles with anxiety- you couldn’t pay him to present in front of a class. At the meeting earlier this year, I asked for accommodations for this. I don’t want that to affect his grades.

Meeting

Ten Tips for Helping

My number one tip for advocating?

I can’t say this enough but know your kid. Knowing what Julian does and doesn’t need has helped so much.

The other tips are:

2. Keep and organize paperwork. I have a binder full of Julian’s paperwork- report cards, the 504 plans, IEPs, everything he’s ever gotten from school. It helps when asking for a new plan if you’re forgetful (like me) or just so you can stay up to date.

3. Create relationships with teachers and staff.

My kids went to a great elementary school. The counselors were super helpful, and almost all of his teachers were great with him. My personal favorite was the teacher mentioned earlier. We love Allison. She’s a wonderful teacher and as an added bonus, she was a special education teacher for some time.

4. Ask ALL the questions.

If you don’t know what something means, ask. That’s what the staff is there for. When you’re starting out, there’s plenty of questions to ask, even the ones you think maybe stupid.

5. Know your child’s rights.

Each state has a different way of doing things in this area. Research the IDEA. The reading can get a bit hard but it’s well worth it.

6. Talk to your child. This is the best way to know if the IEP accommodations are actually being used- for example, Julian gets extra time on testing and this is super important during state testing. Teachers have to go by a student’s IEP/504 Plan.

Your child can learn to self-advocate as they advance through school.

7. Communicate with teachers. Try to stay as pleasant as possible. If things don’t go well, speak to an assistant principal. Remember that the main goal is to get the best plan possible for your child.

8. Remember that you are not alone. Millions of other parents are going down the same road.

9. Research, research, and research.

There’s new information coming out all the time about learning disabilities, assorted medical issues and so on. Knowing the newest information can help you feel more confident when advocating for your child.

10. Plan for the future. I try to plan for one school year at a time, but once Julian hit middle school, it hit me that he will be in high school then an adult soon.

Yikes.

I started looking at high school programs last year and we picked a program to apply for. The next meeting to finish his transition plan is later this year.

Getting kids through school is a challenge in itself. Why make it harder?

Information courtesy of

Very Well Family

Back to the Beginning

Life has a way of pulling us forward and then yanking us back.

Right now, I’m being yanked.

If you need the back story to Lily’s issues, please read

The Things I Forget

Special Needs Round Two

Thoughts on a Second Diagnosis

So Many Late Night Thoughts

Lily’s pediatrician referred us to a dietician and a pediatric endocrinologist. We saw both in one day, which I don’t recommend. It’s physically and mentally draining.

A few highlights:

  • She doesn’t have any major thyroid issues. Meds may be needed in the future but not today.
  • Her pituitary gland is working fine.
  • No autoimmune issues. I’d be crushed if she did because it would be directly from me.
  • However, she’s sitting on the borderline of type two diabetes. Diabetes runs on both my and Matthew’s sides of the family. Her A1c has dropped, and it wasn’t that high, to begin with, but it would be good to work on this.
  • I turned in the OT paperwork and her dietician is signing her up for a cooking class in the spring.

Isn’t that a LOT to absorb in a few hours?

I didn’t sleep well last night at all (these appointments were on 11/12, two days before this post went up) and as Macklemore once said: “I gotta get this on the page”. For him, it means writing out a rap, I’m writing out my feelings via this blog.

I tried to relax by watching some TV and hanging out with Miss Purr, and that helped. I thought all the stress was gone and then I tried to go to sleep.

Nope. I don’t know what time I fell asleep but it was well after I got in bed around 9 PM.

It probably should have been a melatonin night.

How did she gain so much weight and I didn’t realize it? Jeez, I thought I paid more attention.

Developmental delays are forever.

You’re a crap mom for not starting the changes sooner.

How did you ignore Lily but go so hard for Julian and Cameron?

Do I even want to talk to Matthew about this? I can’t go through what went down in the beginning with Julian again. I’d walk first.

(For the record, I did tell him everything but not because I wanted to.)

These are just a few thoughts.

Trying to Not Feel Sorry for Me

I try to keep a positive outlook on life, even when I’m stressed to the max and/or angry at myself.

This gets really difficult when my brain attacks me. I already struggle with severe anxiety. It kicks into full gear when I have so much to think about.

I don’t sleep, I have a hard time relaxing. I usually don’t talk about it even though I fully know I should. The words are hard to get out of.

I try to remember that we are already making changes. Things don’t get easier overnight. It would be great but that’s not how life works.

I remind myself that Lily doesn’t have any major issues, the ones I feared. This is great.

There are three of these kids and one of me. I’m doing the best I can. I’m just not trying to do anything to make things worse for her. I guess that would mean not doing what the endocrinologist and dietician recommend.

I don’t know how I even thought that she would grow out of her delays. I guess it was wishful thinking. I’ve since realized that I was wrong and so I have to adjust my brain.

Let’s Go Back A Few Years

Julian was diagnosed in 2011 and it changed our lives.

I don’t think I forgot about Lily, but I feel guilty now for letting her fade a bit into the background. Does that make me a bad mom? Probably. Maybe not?

I’m not sure at this point.

As for talking with Matthew, that was non-existent for about three years after Julian’s diagnosis. He wouldn’t listen. He questioned my abilities as a mom, which stuck in my mind permanently.

It’s probably why all Matthew gets is facts, not an ounce of emotion. Even after therapy, I’ve had a hard time wanting to open up to him.

*sigh*

He finally got the idea because he wasn’t left with any other choices. I think that stayed with him because so far, nothing bad has happened.

I just know that I feel the same crushing guilt that I did in 2011.

I didn’t feel so much guilt about Cameron’s heart issues because we had no idea until his first episode. I do, however, feel bad for his migraines. That’s entirely from my genetics.

What’s The Plan?

Obviously, I’m going to follow the recommendations whether Lily is a fan or not.

I’m trying to keep perspective. Lily might need to drop some weight and get more active but there’s a student in my preschool class who might lose her eye due to a tumor.

This kid is barely three.

I will bawl if she does lose her eye.

The lesson?

There’s always someone who has worse issues. Lily’s are fixable. My student’s aren’t.

What else? Try to remember that I’m not as horrible as a mom as I tell myself I am and try my hardest to be patient with Lily.

Thanks for coming to my Ted Talk.

Tuesday Thoughts

Bullying is a huge problem. It’s happening in schools, workplaces and other important locations in our lives.

I have told my children this: if someone is bullying you or someone else, they likely have issues that you don’t know about in or out of school. Maybe both. I tell them to be kind to the kids around them because they may need one person who is kind. It might be the thing that keeps them going.

Cameron once helped stop a fight because his friend was having a bullying issue- he was the one being bullied.

I was a bit surprised because he’s usually a very chill kid but he helps those he cares about. Nobody was hurt, but Cameron was definitely a buddy that day.

How do you encourage your child to be a buddy, not a bully?

Picture courtesy of pinterest

The Things I Forget

Parenting is challenging.

Every. Single. Day.

If you have one kid with any kind of medical issue and/or special needs, the challenge gets more intense.

Fair pic

Inside This Mom’s Mind

I didn’t realize that sometimes, after some years, that we can adjust to our kids’ issues so much that we can almost forget about them.

Sometimes. It depends on the kid.

It’s not that I forgot about Lily’s delays, but maybe I did forget that delays aren’t just during baby/toddlerhood.

Once she aged out of First Steps (early intervention) at three and went to preschool, I thought “okay, we’re good”

The person that completed her exit eval reminded me: “She may be behind in some areas as she gets older, but we don’t know which.”

She had a difficult time learning how to read. Even after she got good at it, she still asked to read to me, Matthew or my mom. These days, she’s reading “Dork Diaries” books, so I’d say she’s on track.

As you’ve read in other posts, she’s had further issues that pulled me to put her in therapy.

You can read those posts Special Needs Round Two

Thoughts on a Second Diagnosis

A Big Breakthrough

As of now, Lily is 4’9″ and weighs about 160 lbs.

Her pediatrician is concerned and as a result, she’s had labs drawn to see what’s up.

Of course, her thyroid is basically nonfunctional. I wonder where that came from? Mine was bad before losing half of it, but Lily’s levels are basically bottoming out.

Don’t worry, she is seeing a pediatric endocrinologist in early November. Her pediatrician is certain she will end up on the same meds that I am on.

We’ve changed her diet (still in progress) and she got referred to a dietician. The very nice dietitian asked if she could discuss Lily with the Occupational Therapy department and…

Here I am, filling out paperwork for an OT eval.

I know she doesn’t need speech therapy. She’s loud and there is no misunderstanding her. In that area, you can definitely tell she’s almost 12. The attitude is real.

In the years since First Steps, I guess we have adjusted the best we can.

Lily hates exercise, new foods, and most things yucky, except slime. She LOVED slime. At 11, she still can’t ride a bike. This doesn’t mean we haven’t tried. Julian even tried to help her ride a bike- he’s been on one since he was four.

While filling out the OT paperwork, I’m reminded that even though she isn’t a baby, she still has issues that are impacting her health. Her daily life.

*sighs*

How do I feel?

Tired. Overwhelmed. You know, the usual. I have many thoughts, some found in The Deeper Thoughts of a Special Needs Mom

Dunk tank

Birthday water fun

Trying My Best

Lily has ADD, minus the hyperactivity part. (Julian took that part and RAN with it.) I try my hardest to remember this when asking her to do things and when she’s in trouble. I forget that she is a bit behind her peers emotionally and socially. Being her isn’t always easy.

But yet, I entirely screw up. I lose patience. I get upset with her. I apologize and try to move forward. Some days are better than others.

Parents aren’t perfect, no matter how hard we try. We have to give ourselves some room.

The things I forget come back at the weirdest times!

A Back to School Check-In

I am more than happy to report that my kids are back in school. August 14 was a magical day in the Sanders house.. at least for me.

After a little more than two months of summer break, I was more than ready to send them back to school.

First day of school

Wake-Up is Mom’s Payback

Wake-up time now starts at 5:30 am for Cameron, 5:45 am for Lily because she’s a bit of a sloth in the mornings and Julian wakes up at 6.

I could swear a small part of my heart broke when Cameron got on the bus on the first morning to go to high school. My big kid is now a freshman. This fact hurts my heart. I am not sure where the last 14 years have gone, but here we are. I gave him a pep talk in the car while we were waiting for the bus and he was like, “I’ll be fine, Mom.”

He jumped out and that was it. I was sad before sunrise.

Cameron hasn’t had homework yet, has only gotten two textbooks, but I don’t think he’s prepared for what’s coming. I’ve warned him about high school workload, but he thinks I’m kidding.

I’ll be able to help him with some things, but I can forget helping him with physics and engineering. Those aren’t even in my scope, but since his grandfather is a machinist, I’ll leave that to him.

He wanted to join the cross-country team, but I was not about to let him run in the extreme late summer heat.

For example, today’s temperature was 97 degrees (practice was canceled) and while he wasn’t happy, he understood that I wasn’t willing to risk his heart for this. Heat is one of his biggest triggers for an SVT episode, even if he stays well hydrated.

The Middle School Edition

I wasn’t sad about sending Julian off to the eighth grade, but sending my baby to middle school?

Ugh. I won’t lie. There was almost a tear.

Julian is not amused by this school year, it seems to be more of the same so far. Julian thrives on routine so I think he is doing well. He gets up, dressed, and so on. I encourage him to eat breakfast- sometimes he will, but usually not.

Lily takes forever to get moving and I almost drug her out of bed this morning.

I’m not kidding.

She has to pick out a headband, earrings, and socks to match her uniform. This might take a while, even though I have told her it may be easier if she does this the night before.

But what do I know? I’m just Mom.

I know nothing. Or so they think. I actually know plenty, but they don’t realize this yet.

Homework has finally entered the house- Julian got science homework today (this post was written after everyone came home from school).

So far, Lily seems to be doing okay with middle school. She has some friends with her from elementary school and joined a class that does service-based projects around the school.

I think this will be good for her. She likes helping others and the class does creative things that will allow her to have fun with her creativity. She’s also talked about joining the visual arts society.

I have tried to get Julian to join something at school with no success. Maybe in high school?

Mom’s Spare Time

Mom’s WHAT?

Mom has no spare time.

Mom got a job.

I have a part-time job as an instructional assistant at a preschool for visually impaired children. I work while the kids are in school and I’m home before they are. It’s literally the perfect schedule. I work with three-year-olds, hence the picture of the small yellow chair.

The students start on the 28th, so the adventure begins with them soon. My class has 9 kids in it. There’s a lead teacher and another assistant with me. I have basically zero experience with visually impaired kids, but I have a lot of experience with kids that have other disabilities and those that are non-verbal.

Watch my Facebook and Instagram for updates!

How is the new school year going for you? Were you happy or sad to send your kids?