"Write Everything Down"

“Write everything down,” my adult daughter said.

I stared at her, equally amazed by her wisdom and my epic fail to practice what I’ve been preaching for more than a decade.

When I spoke at special needs and disability conferences–pre-pandemic of course–parents would ask how to be effective advocates for their kids. My top 3 tidbits of advice were always:

1. Let people in.

2. Don’t take no for an answer.

3. Write everything down.

How had I forgotten my own best advice this spring while advocating on my mother’s behalf? I’m blaming my oversight partly on the pandemic (it’s about time it was good for something), and partly on my inability to see that effective special needs advocacy practices are equally effective while advocating for the elderly.

I tore myself away from staring in amazement at my daughter–when did she become so wise?– and went into my office where I began to write everything down as she had advised. That was about 2 weeks after Mom’s health issues began, and the timeline of events was still clear in my mind. At the time this post was written, the timeline had stretched to 4 weeks and counting. If my daughter hadn’t said to write everything down when she did, the increasing number of events would have become muddled and my recording of them inaccurate. Not good.

Because effective special needs advocacy practices can be applied effectively during elder care advocacy, and vice versa, let’s see how the other two tidbits of advice can work for both populations.

1. Let people in.

Once I wrote everything down, I sent copies of the document to my 2 siblings. I add to it a couple times a week and send the updated document to them again. Why? First, it eliminates the need to send lengthy texts to keep them in the loop. Second, they send me feedback about what they believe next steps should be. Today’s update led to my brother and I scheduling a meeting we’ll attend together on Mom’s behalf. Our sister, who lives in a different state, suggested language to use during the meeting. By letting them in, our advocacy is united and more powerful. We do our loved ones, whatever their ages, a great service when letting people leads to more effective advocacy.

2. Don’t take no for an answer.

As a lifelong rule follower and people pleaser, this one’s hard for me. I trust and respect people in authority. I don’t want to question them. If I was the only person involved, I probably wouldn’t question them. But this isn’t about me, just like your advocacy on behalf of your kids. It’s about them, their care, their quality of life, and respecting their wishes. So when I detect inaccuracies or hear something stated from an incomplete perspective, I push back. I provide my version of events and share my documentation. Which leads back to where this post started.

3. Write everything down.

Mom will need my sibling and I to be her voice, her advocates, for the rest of her life. Depending on your children’s special needs or disability, you will be their voices and their advocates, at least for a time. By writing everything down we are equipping ourselves to speak well on their behalf, for however long our loved ones require our advocacy.

I’ve added a final tidbit of advice to my list, though it may not work for you. Would you like to know what it is? Listen to your daughter. She’s one wise woman!

Written by Jolene Philo

Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She's also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.

Trust Your Mom-Sense!

You are not just a mom! Don’t let others intimidate you into questioning what you know is working or not working for your child. Trust yourself and keep moving forward.

I have to admit that sometimes I outwardly went along with the therapist’s plans for my child (shhh, don’t tell her. She really was a good therapist), but when I saw it was resulting in much more frustration on both my child’s and my part on a daily, hourly, basis driving us both to tears and at the same time not resulting in any progress, I set it aside and did other things. We kept the therapists’ weekly appointments to document his progress and I could keep in mind what he as supposed to be working on and maybe try it a few times over the course of the week instead of every hour and see how he responded, if he responded at all. From the therapy, I learned ways to help him when he was ready for it and markers by which to measure his progress. But, at the time, he wasn’t ready for it. It was helpful, but it wasn’t what he needed most at the time.

As his mom who was with him all day every day, it was obvious to me. The therapist couldn’t see it on a day in, day out basis. All the tension and anxiety the therapies introduced and his complete lack of ability to respond how he was asked to respond just made things worse. Instead, I focused on what he could do and built on that and focused other aspects of his treatment apart from therapy.

Yes, there are times to push our kids into things that are difficult for them. They need to be stretched and challenged in order to grow. Sometimes, that will cause tears and frustration. But as mom or dad, you have a front row seat to what is stretching them toward growth and what is pushing them too far and into the breaking point. No, you won’t get it right every time. And sometimes, hindsight will inform you how to do something differently next time. That’s okay. That’s part of the journey. Learn from it and adjust, but let the guilt go!

When a DAN (Defeat Autism Now) doctor insisted on a treatment program with medications that I had seen cause significant regression in my child and refused to treat him without him being on those medications, I pulled my son out of that doctor’s care and went back to the drawing board to figure out how to do accomplish the same treatment goal another way. And I did it!

 Moms, Dads, you are amazing advocates for your child! You know your child better than anyone. If plan A isn’t working or is causing too much angst, there is plan B, C or D. Even if plan B, C, or D doesn’t exist yet and you have to figure it out. Take a deep breath, pray, talk with other parents who have been there or somewhere similar and take one step forward. Then another.

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.

Warrior Parents

The Lord will fight for you; you need only to be still.

~ Exodus 14:14, NIV

I really should have taken up kickboxing, or just plain old boxing, or something involving a punching bag. I guess I still could. If I’d known all the fighting—or what some prefer to call “advocating”—I would need to do for my son Luke, I just might have.

Luke had just turned three when he was diagnosed with autism, and that meeting with Dr. Davis, the neuropsychologist, was devastating. My mom came with me that day because Mike had to work, and I remember how mom and I wanted a plan: “Do XYZ and he will get better.” The doctor did give us a plan that included preschool through the school district, Applied Behavior Analysis (ABA) and speech therapy (Luke was talking at that point), but she said it was hard to say what the results would be. After many tears on my part and much reassurance and what I thought was denial on Mike’s part (I was wrong about that!), I hit the ground running. ABA, check. Special needs preschool, check. Speech therapy, check. Back then I didn’t realize that becoming a warrior parent would be required.

Instead of gaining more speech (he had about seventy-five words and some two word phrases from age two to about three), Luke began losing speech until we were down to one word: More! And then that disappeared too. He’s non-verbal now although we do hear from him occasionally. When he is mad, we often hear a loud “NO!”

Luke’s experience in our school district’s early childhood program was awesome. We were so thankful for his team there and that they had a class specifically for kids with autism. So kindergarten came as a complete shock—and not in a good way.

Before school started that fall we set up a time for Luke, Ana (his home therapist) and me to visit the classroom. This was a classroom specifically for children with autism and it was run through a co-op of another school district. His room had a new teacher. I knew we were in trouble when his teacher said, “I’m so glad you brought me this information. I really have no clue what I’m doing.”

Um. What? Come again?
And I’m sending my precious boy to your class, why?

It turned out to be a place where Luke and the other children weren’t taught anything. Where none of the plans were followed, no IEP upheld, and no data taken. So it was time for some fighting on my part. And I wish I had stepped in the ring sooner.

Finally, in February, after a tip from a friend whose son was in the same class, we hired an advocate and got him out of there. In April of his kindergarten year, we placed him at a school for students with autism called Giant Steps, for which our school district pays. It’s a much better place where the staff is actually trained in how to work with folks with autism.

But this didn’t mean my fighting days were over.

One of the hardest, most emotional battles to fight can actually be with our churches. Thankfully, our church is growing in the area of special needs ministry, but not without tears and struggles littering the path. It hurts.

Jesus reached out to those on the margins. He spent time with them, healed them, and had compassion on them. Each of His children is an important part of His body, and He wants them to be able to use the gifts He has given them. When His children with special needs are missing—in some sad cases even asked to stop coming to church—His body is incomplete. It’s a huge mess and really tough when the church is slow to follow His lead. When the families who need extra support and love are rejected, it makes me so mad and so sad.

I love the television show “Parenthood”. Kristina Braverman, one of the characters on the show, has a son, Max, who is on the autism spectrum.

Watching one episode, I got teary when she said this about caring for a child with autism: “What works for some kids doesn’t work for all kids. . . . I feel like the system is broken. . . My husband and I have fought the system time and time again to make sure he gets what he needs, that he’s not overlooked. . . . My son, Max, is a fighter. . . . On behalf of Max, I’ve become a fighter, too.”

For those of us whose loved one is nonverbal, I think we feel what Braverman describes even more acutely. Since Luke can’t talk and tell me what is going on, it’s a huge act of faith to entrust him with others, when I’m not with him. If I find out that something is off in the way he’s treated, my mama-bear response can be quite loud and aggressive. But isn’t it true that we stand up for those we love, just like God fights for us?

When I remember that the Lord fights for me, it’s an immense help as I do battle for Luke, both inside and outside of the church. The Lord fights for us. As Moses led the Israelites out of slavery, they were terrified that the Egyptians were pursuing them. Moses reminded them to stand firm because God would fight for them. And He did! He used Moses to part the Red Sea so that the Israelites could escape. If you have time, take a moment and read all of Exodus 14.

Jesus is the one doing battle for us and our special needs loved ones. We are not duking it out on our own, even if it feels that way sometimes. He is in our corner, and He has not forgotten us. We are not alone in the fight.

Thank you, Lord, for that!

Discussion Questions:

1. Have you had to do battle for your child on the spectrum? If so, how has it changed you?

2. Is it easy or tough for you to remember that the Lord is fighting for you and your child/children? Why?  

3. Re-read Exodus 14:14. What do you think it means “to be still” in this verse?

This article is a shortened version of a chapter Deb Abbs wrote in Life On The Spectrum. To read more from Deb Abbs and the other authors of Life On The Spectrum check out www.lifeonthespectrumbook.com or order the book below. Because no two people with autism are the same, Life on the Spectrum’s authors all bring their unique perspective and experiences to the table. Their honest, raw and heartfelt stories show how God is at work in the real-world struggles of families impacted by autism.

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Written by Deb Abbs

Deb, who graduated from University of Illinois–Champaign/Urbana with a degree in journalism, works as a freelance blogger, as well as a disability ministry coordinator for InterVarsity Christian Fellowship in Illinois and Indiana. Her writing has been featured in several magazines and she was a columnist with the Kane County Chronicle.

She also contributes to Key Ministry’s blog and is one of the administrators of the largest online special needs ministry leader forum, with over 1,000 members.

She lives in the far western suburbs of Chicago, Illinois, with her husband, Mike, their two sons, Brandon, 18, and Luke, 14, plus a crazy English bulldog named Crystal. When not otherwise occupied you will probably find her with her nose buried in a book.

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