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

Five Ways to Avoid Holiday Meltdowns

Meltdowns are not a fun event, no matter what day of the year it is. Most of the time, they can be avoided, but sometimes, it’s entirely out of our control. To learn more about meltdowns, you can read The Truth About Shutdowns and Meltdowns

Give thanks

Bringing Down The Stress

The holiday season can be a stressful time- starting with Halloween and ending at New Year’s Eve. This can depend on which holidays your family celebrates- some families don’t celebrate anything at all, some celebrate everything.

Isn’t that neat? My family celebrates Thanksgiving, Christmas, and Chanukah. My mother is Jewish, so we go to her house every year to have some fun over the eight nights. It’s fun but can get a bit tiring, so we go at our own speed.

Things can be a bit more stressful if you run into family members that don’t understand your child’s special needs- especially if they don’t want to. There is a difference between not knowing and not wanting to know. This topic is a bit more detailed in Helping Your Family Understand Your Child’s Special Needs

Overall, there are ways to help your family get through the holiday season in a way that everyone can remember fondly.

Upset child

Five Golden Rings…I Mean, Tips

  1. Avoid places with crowds, loud noises, etc. Many kids with special needs do not like the line to see Santa. It’s loud, bright, and if you’re Julian, there are germs everywhere. Some kids do not do well in crowds, because it’s too cramped, things move too fast, and sensory issues can be caused by very small things that we are not aware of. Some places are becoming more aware of this and are offering sensory-friendly gatherings, so look around in your area.
  2. Be flexible. This is most likely the most important tip. Flexibility is a requirement in parenting, but in this case, there’s more of a need. Things can change in a second with our special needs kids, and this is okay. Things can become just too much for them, and they need the ability to find a quiet spot to calm down in or leave entirely. Bring two adults to events so that one can stay with the other children, bring adaptive equipment, etc.
  3. Watch out for wandering. This can occur when a child needs to escape quickly from a situation they do not want to be in- a loud party, for example. Keep an extra-close eye on your child near doors and other routes away from your location.
  4. Keep up your routine. Most kids are on a break for a week before and after Christmas. It’s important to keep up a daily routine- eating and sleeping as close to usual times as you can. Kids do better when they know what is going on. It keeps their anxiety low and they are less likely to get off-track with behaviors.
  5. Take a break if you need it. If things get to be too much for you and/or your child, it may be time for a break. Don’t go to the next party. Don’t worry about the next celebration. Stay home, watch a movie and snuggle up with your family. This can be more fun than going out and potentially creating more stress.

Christmas gifts

The holiday season is upon us, the weather is getting colder. Let’s make great memories with our families.

What tips do you have to prevent meltdowns with your kids?

Photos courtesy of Unsplash

Information from CBS

Twin Mummy and Daddy

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.

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!

All the Wishes and Dreams

Many years ago, I knew I wanted to have kids.

At one point, four sounded great, but that got cut after Cameron was born. He was a tough baby and now he’s my most chilled-out kid.

Three is enough at this house. I have friends who have more than three, and I wonder how they do it.

Every parent that I’ve ever met has some sort of wish or dreams for their kids. Mine probably isn’t much different from theirs.

Kid pic

Doesn’t he look thrilled?

The Biggest Wish

I want my kids to live a life that they love. College is still debatable for the boys, and Lily hasn’t said much about it. I don’t think a college degree is necessary to go into an occupation.

My career required a degree, but not all do. I could have become a CNA and possibly made more, but due to RA, I’d probably have to stop at some point if not already.

My theory is: if it’s paying your bills, legal and you like it, then I support it.

Our school system has programs at each high school that students can go into for a career if they decide not to go to college. I think this is a great idea. Cameron is in a machine tool, computer-aided design (CAD) and engineering program.

He’s following in his grandfather and uncle’s footsteps. Matthew was NOT interested.

Julian is looking at programs and thinks a graphic design program might be a good idea. He loves computers and video games and loved to draw when he was younger.

If this is what makes them happy and fulfilled, who am I to stop them?

Of course, there’s more to life than working, so I hope they have a partner that they can be happy with and friends who they can be themselves with and are there when they need them. I also hope they remain passionate about what they like and believe in.

You can read more on my thoughts about my kids going to college here

Zoo selfie

Remember Who You Are

This was my grandfather’s biggest lesson to everyone in the family and it’s on his headstone.

In my kids’ case, I hope they remember that they can always come home and I’ll be here.

This also means being yourself and never running away from or changing that. That never ends well- I tried it and I was miserable.

In part of knowing who you are, I hope my kids never, ever accept being treated less than they deserve- because they deserve the best person for them. This also means never treating anyone with less respect because they’re different in any way. I think that lesson has been extensively covered.

Accepting people for who they are and where they are in life is a huge value of mine and I’ve worked so hard to teach my kids this. I think Cameron and Lily have learned a lot about acceptance, thanks to Julian.

I also hope my kids accept themselves as they are- nobody is perfect and I don’t expect anything close from them.

Funny meme

Adulting is a TRAP

I joke about this, but adulting is tough.

My boys can’t wait to hit 18, then 21 years old. They can do all the “fun things”.. Like pay bills and work?

I’m huge on self-sufficiency. No kid in this house is moving out unable to take care of themselves. All of them can cook in the microwave (we’re working on the stove), do laundry, clean the house (some better than others) and other things.

Welcome to the Future

At some point, I’m probably going to become a grandmother.

I plan to spoil them terribly and send them home.

I haven’t always been the best mom, but I’ve always loved my kids. I think they know this, and maybe my parenting will get passed down- the humorous parts, hopefully. They can do without the drinking part.

I hope my kids are great parents- they’ve seen me do my best with very little, struggle with my health (physical and emotional) and still be an okay mom.

Mainly, I want these kids to have more. We’ve struggled financially and it’s not fun for anyone involved. It’s stressful and can break a family.

I know their lives will hit difficult periods- I hope I’ve armed them with the tools to get through those times.

Just an Ordinary Mom

I’m just a mom writing a blog of my thoughts. I don’t wish or hope for much with my kids. I’d love to see where their lives lead them. I’m trying to stay healthy (and mobile) enough to do so.

For further reading:

What I want my kids to know about Friendship