Category Archives: Family life

How to Prevent an Autistic Child’s Baker Act

Another 8 year old was just “Baker Acted” in my county.

I want to say bad words.

Instead, I’ll take this opportunity to share what I have learned the hard way to help prevent psychiatric institutionalizing from happening to anyone else.

It’s not fail safe, and I am not an attorney.

I am a mom who is angry, sick and scared that parents of children with special needs not only have to worry about IEP meetings, social skills, physical care, emotional well being of their children but ALSO they have to worry about an overzealous person removing the child unnecessarily from their home.

I get it: Sometimes Baker Acts are necessary. This act exists to protect a person who is danger of physically hurting themselves or someone else. AND the law also states that this is only to be enacted if “it is not apparent that the harm may be avoided through the help of willing family members, friends, or the provision of other services.”
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How to determine if the individual appears to meet baker act criteria.

So here is what I have done to help prevent a Baker Act in the future.

  1. I met with school staff to explain my child’s diagnoses and behaviors. A  school employed behavior analyst walked the staff and teachers through my child’s Behavior Intervention Plan. I explained that my family can and will supervise my child 24/7, we have no weapons in the home, my child is under regular care of a psychiatrist and we have resources to hospitalize him other than the awful county facility should we agree he need hospitalization.
  2. An attorney friend sent me the website of the Citizens Commissions on Human Rights on preventing Baker Acts, which has helped me with step #3.
  3. I filled out and had the form from the website above^^ notarized, and put in my child’s school file after the guidance counselor signed acknowledgement of receiving this. I keep a copy, too.
  4. I scheduled a meeting with the school resource officer. I brought a copy of my son’s IEP and Behavior Intervention Plan. I spent an hour talking to him about my son’s behaviors, what to do if he had a meltdown, and gave him a copy of the notarized form from #2 and 3 above. I talked about our ability to care for him, our family support, and that we have insurance and resources to choose which hospital our child should go to if it was necessary. I made it clear that we would employ litigation if my son was Baker Acted unnecessarily. The SRO thanked me and suggested all parents of children with autism or behavior difficulties should take the time to meet with SROs.
  5. I let the IEP Team and the SRO know that the SRO is not to become a preferred person for my child. The less interaction, the better, per our advocate from Florida Disability Rights.
  6. At our IEP Meetings, our amazing advocate reminds the team that a Baker Act for a child who has known statements and behaviors consistent with autism is inappropriate. Autism is a developmental disorder, NOT a mental health disorder.
  7. I check in via email weekly with school personnel, so they know I am continuing to be involved even if I am not physically present at the school.
  8. One thing I would *like* to have in place is a psychiatrist willing to sign release on Baker Acts in the future. Our current provider will not involve himself in “legal cases”. I’m working on changing providers, because I think it’s really important to have this “Uno Wild” card just in case. A psychiatrist is the only person with legal authority to sign a child out of a Baker Act situation once the process has been initiated.
  9. I pray daily for my child and the people who surround my child. God can cover what I can’t.

What do you do to help prevent this? I’d love to hear your ideas.

 

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Interactive Dinner

When our oldest was a toddler, I learned how to make and roll sushi.

Its kind of labor intensive so we haven’t made it in eons.

But we were all home this week so my husband and I decided it would be a fun menu option.

I made the short grain rice in my Instant Pot. 2 cups of rice, 2 c of water, press “rice” and walk away. Add 1/4c. sushi vinegar with seasoning and voila! Rice is ready.

Everyone took a turn creating a special roll. We had cooked shrimp and ikrab, cream cheese, avocado, and cucumbers.

Note: I sometimes refer to ikrab as the “hotdogs of the sea” but my husband doesn’t appreciate that humor so I will refrain. Probably.

The plastic rolling mat was given to me by a Publix sushi chef 13 years ago when I asked him how his rolls were so tightly packed, because mine fell apart.

My youngest won’t eat seafood (you’re eating a body!!) so veggie cream cheese rolls were her choice. That is her favorite plate–with a picture of her, a birthday gift from when she was 3!

The girls both participated and enjoyed the meal. We dined on edamame as we took turns creating rolls to share.

Our son had a ham and cheese sandwich of course. We have decided not to force him to eat unpleasant (to him) options.

We all ate fortune cookies for dessert–a novelty for the kids.

The girls had kitchen patrol duties following. They are growing up and so helpful! I am more willing to do the messy or difficult projects when the kids can actually help. Funny how that works!

New Year and Resolutions

So, what’s new for 2019?

Well, my planner is brand spankin’ new–and getting it prepped with washi tape is kind of fun.

Besides looking at a beautiful brand new open slate of blank pages waiting to be filled, the truth is:

nothing else is new.

I am still flawed. I still have dreams and goals.

My family is still, at its core, the same.

Same habits exist, some good and some that need to go.

Same teachers and homework and projects when school resumes.

This quiet Christmas space of reflection and preparation is a chance to breathe and an opportunity to set a course for when chaos resumes.

I have learned this year what and who is most important. I have discovered that God never stops caring, never ceases delighting and surprising me.

I am enjoying this family time playing new board games, listening to classic jazz while baking homemade cinnamon rolls and reading Harry Potter and the Sorceror’s Stone out loud with my youngest on her first reading of my favorite series.

People talk about setting a word of the year, about creating New Year Resolutions. For me, that feels confining. I have some ideas in how I want to grow and how God can use me this year. But I am open minded.

I am setting my priorities and goals for this new year, and confident that my family and I do not walk alone.

Happy New Year!

Side note:
Here’s a referral link for Erin Condren planners because i love them so much–and I hope you will love them too!)

Advent Craze

Life feels hectic and crazy. I realized at the beginning of December that I was in over my head. My first clue was when my kids’ therapist started asking me more questions about myself and talking about self care.

My second clue was when I stopped going to the gym.

My third clue was when I found myself with a heaping bowl of carb laden pasta.

This was survival mode.

I dug in my heels and came to a screeching halt. All non-essentials moved to the bottom of my list. I decided to accept the carbs and the naps temporarily. I begged out of activities that weren’t necessary.

I took advantage of a cold and decided it was the perfect excuse to not attend the kids’ class parties and to not volunteer at the schools.

I stayed in bed more. I plowed through work and focused on getting my children’s academic requirements completed. We had a mountain of papers that hadn’t been turned in for one kid. His teacher said we should do the extra credit, too.

I told his teacher we are limping along until Christmas break and the extra credit won’t be completed. I’m not sorry. I’m desperate.

Gifts were purchased on amazon. I actually wrapped them all. Our elf moved to a new location in the home most nights.

This was a stressful season for me and I’m so glad the hectic Advent holiday festivities are over.

Why do all of my children’s clubs, classes and friends insist on December celebrations? Christmas is a beautiful, holy season. Advent, on the other hand…

Why not do a January winterfest? A March umbrella party? A June beach bash? We had 8 different activities scheduled by clubs and classes for December, most of which are nonreligious associations. It was overkill.

Now we are in the Christmas season. Santa and his elf have come and gone. It is time for family, games around the table, leftovers, and peace. My two younger kids even played together without fighting (and I have pictures to prove it!)

Its not all peace–it is boredom and discomfort in the quiet, too.

The one thing I insisted on was putting up outside lights. I did a simple line of icicle lights and threw our multicolor netting over the front garden. The symbolism of the lights shining, even in the darkest nights, remind me that God is still here, even when I feel like I’m smothering under a heavy blanket. I’m not alone, and there is always Hope just around the corner.

He should go somewhere else.

Someone repeated this statement to me in tears, notifying me a school employee had made this comment.

He needs too many services. Too much help.

He shouldn’t be here.

Where should he go then? He is legally entitled to a free and appropriate education.

Treating my child as a distraction to your teaching is beneath you.

How you treat the least of these speaks more to your character than how you treat the gifted elite.

You’re feeling overworked and overwhelmed and overloaded. So is he.

You’re unhappy he is in your class or school. So is he.

You notice he doesn’t work well in groups with other kids. So does he.

You think he’s unworthy.

So does he.

Your behavior models for the other students how to treat a child with special needs. Your attitude impacts your relationship with my son–and any other student who is wondering if you are a safe person.

To any teacher, administrator or staff member: if you feel a child can not learn without additional supports in place…then advocate for the child. Speak up at IEP meetings. Help determine what supports the child needs and would benefit from. Give encouragement and be willing to dig in to figure out how to reach him.

Join our team.

Please don’t work against us. It’s the child who loses.

School Meetings and Phone Calls

When I get a phone call from the school, my stomach sinks. I pause, wondering about how my day will change. When I hesitantly answer, the fake cheery voice doesn’t soothe me. It scares me. I silently breathe a prayer as I hear about the latest problem.

When I hang up, I cry.

Then I steel myself to whatever action is necessary on my part. I leave my job early, or turn around on my way. I call my husband and we formulate a new plan. I spend my life on the stupid phone.

When we walk into an IEP meeting, we feel like sitting ducks.

Sure, the staff try to begin by talking about positive things regarding our child. And then we dive into all the tantrums, the bad grades, the melt downs, the language, the inability to cope, the self injurious behavior. It’s taken me 5 years of these meetings to start to realize they’re probably not blaming us.

But we feel responsible. We feel defensive. We hate having to go over all of the data and incidents. It’s just another meeting to them–but to us, it feels like one more nail in his coffin of Hope and Possibilities.

And sometimes, I think they do blame us.

We try so hard. It never feels like enough. We want our lives to be normal, uneventful, boring. Instead they’re so filled with stress and adrenaline and cortisol that we can barely breathe. We’ve been to trainings. We’ve implemented everything we possibly can. We are as present as possible. We give everything we have to our children. Someone always feels left out.

And when we hear from the school that our kid is failing, is tantrum-ing, is out of control–it’s more than we can bear. I’m sorry, but what more can we do? We drive 65 miles to the nearest psychiatrist on our insurance plan. We take all of our children to therapy several times a month.

We create a stable, predictable home environment for the very child who creates chaos and disruption.

We spend hours on homework, we follow up with teachers (for the love of donuts–PLEASE keep your electronic grade records up to date! I cannot follow through if I don’t know an assignment exists!).

And we bring an advocate or attorney to meetings now because we have been let down so many times. We have tried on our own–just to have services removed or not be offered that actually benefit our child.

You act like we are combatants, when we are actually tax paying parents who desperately want our child to have an appropriate education.

I wouldn’t call it free when we’ve shelled out thousands of dollars for therapies you wouldn’t provide. Like how his speech wasn’t bad enough to qualify when he was 4-6 years old little so we paid for that privately out of pocket until our insurance plan changed. Now he’s 13 and difficult to understand.

Or like how he didn’t receive services he desperately needed the first day of middle school and was so stressed that the SRO institutionalized him.

So please don’t blame us for bringing whatever experts we can finagle to these meetings.

His volatile emotions are understandably challenging to navigate. Imagine living with him. I know my son better than anyone.Yet I often feel like I have zero authority or “expert status” when discussing his education and behavior.

I know most staff members try their very best. I’ve witnessed kind, warm, loving words. I know my son is regarded affectionately by many. And I am grateful they catch a glimpse of his humor and kind soul. Thank you for that.

Please understand that as his parents, we are responsible for him above all else. When we entrust him into your care, we are praying that you will treat him tenderly and help guide him to be his very best.

We pray for you every day. We hope that you are praying for us, too.

ABCs, Stars and Dots

Who invented report cards, anyway??

My youngest came bouncing home with her first report card using a  traditional grading scale (A-F, instead of Os and Ss). She has always been a conscientious student, eager to attend school, follow the rules and help other students who are struggling. She is bright, always reading and quick to learn.

She and I were both surprised to see two “C”s on her report card. Admittedly, I’ve been distracted with her brother this quarter after our traumatic beginning to the year. She requested to change to a new class that opened after the school year began, and her dad and I supported her in her request. As a sibling of someone with autism, she has unique stressors including a volatile, irritable sibling and she often has to exercise patience beyond her years.

We let the new teacher know about our family circumstances, and I offered to volunteer in the classroom.  We eat lunch with her at school about once a week, and we know she is making friends and assumed her academics were fine.

A “C” is passing. A “C” is average. A “C” is not an academically respectable grade. There goes Honor Roll . . .

I believe my daughter has absolutely done her best–but I also know she is academically extremely capable. There is a disconnect and I can’t yet pinpoint it.

Her report card stated they are fostering “independent learning” and she needs to ask for help when she doesn’t understand the instructions because she is very quiet and obedient.

She is 8.

I hugged her and told her it was fine, we would schedule a parent conference, and it’s ok. We moved on with our evening.

And then bed time rolled around. My daughter was sobbing into her pillow, feeling ashamed. I wanted to say bad words about grades in general but didn’t.

I remembered this amazing children’s book we have been reading written by Max Lucado called “You Are Special.”

It’s about these wooden dolls who stick dots for bad things and stars for good things on each other all day. Except for one character, to whom the stickers don’t stick. She ends up taking a sad dot-covered doll to meet their maker, who tells him, “The stickers only stick if they matter to you.”

I reminded my daughter of this story and the perspective  “A”s are stars and “C”s are dots to her.

But I asked her, “Does this change how much I love you?”

Does this change how much God loves you?

Does this change who God has made you to be?

Does this change whether you can make a difference  in the world?”

She shook her head.

“That’s right, darling daughter. NO. A thousand times, NO.

Nothing you do will make me not love you. Nothing you do will make God not love you.

“You are so loved. I’m sorry you’re feeling bad about your grades. Daddy and I are going to meet with your teacher to find out how to help you earn better grades.

I whispered: “(And don’t tell your brother, but grades don’t matter as long as you learn what you need to learn, until high school.)

She hugged me and said, “You always know how to make me feel better, Mom. thanks.”

I prayed for and with her, thanking God for loving her so very much. Asking God to give her courage at school and teaching her what God wants her to learn.

I still want to say bad words about report cards and arbitrary grading systems. I will employ self control.