Category Archives: autism

A New Beginning for School

I thought I was prepared for this year. But I don’t think anyone can be truly completely prepared.

The days leading up to the beginning of school had me on edge.

I felt very triggered by many little moments, and my emotions crescendoed when I drove past the police officer (police car ironically wrapped with “Autism Awareness” art) who had initiated my child’s Baker Act.

I took my own advice and made arrangements to meet with all of my child’s teachers before the year began. They graciously stayed through part of their lunch break in a day packed with meetings to give me an opportunity to highlight my family’s care for our child, my child’s strengths, and special concerns. The school administrator who has taken point with my family accompanied me and had already explained the circumstances of last year and why this meeting was so important.

At orientation to pick up his schedule, my son seemed more relaxed than he had been the previous year. Adults greeted him kindly and he lit up, giving special “secret handshakes” and grinning at some of his favorites. He showed me where all of his classes were, negotiated an elective with his guidance counselor and waited patiently in line for final sign off and planner assignment.

The vice around my heart eased a little.

The first day of 8th grade passed uneventfully.

The first week of school, I waited for a phone call about his behavior. And it came–from a teacher notifying me of the remarkable growth he is showing.

My son filled in his planner every day. He was doing homework. He had me sign the class syllabi and other forms. We offered him an end of the week reward to continue using his planner, and he earned the (appropriate) movie rental of his choice.

I attended his school’s Open House last night, braced for the sympathetic glances and platitudes.

Instead, every single staff person–from administration to teachers–had positive comments on my son’s demeanor, attitude and behavior.

This was such a moment of grace for me.

The relief flowed over me and as I recall this wonderful evening, I am undone.

Reflecting upon what has changed, I realize that last year was stressful for all of us. A disastrous and traumatic first day coupled with missing the first 3 weeks of school catapulted my son into daily uncertainty.

He had missed the typical instructional season of instilling routines and rules into the students–step by step building of the notebooks, navigating early friendships and use of planners. He had to learn the rules and consequences and he had to learn to trust the adults at his new school.

They have proven themselves trustworthy.

Thank you thank you thank you.

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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.

 

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.

Self Care

Self Care is the name of the game for long term wellness.

My child’s therapist said I’m the only mom my kids have; that it’s stressful enough having a child with special needs not to mention when medication isn’t balanced and we are recovering from earlier events. She challenged me to think of concrete things that I can and will do to ensure I come out of this season strong.

1. Self Care Fridays.

Once the kids are out of the house, I reserve the right to do what I want. Watch a show, get my nails painted, ignore emails, eat some chocolate. This is my rest, reflect, be still Sabbath time. I’m keeping my calendar clear

2. Exercise.

I have never regretted a workout. I will remember this when it seems like too much work to find my sneakers and sports bra.

3. Plan.

I love my Erin Condren planner. Planning my weekly tasks and to dos helps me feel in control.

4. Detailed notes.

I’m keeping a large spiral notebook handy where I log everything I do for my child: phone calls, meetings, appointments. I am surprised at the amount of time I have invested into keeping him healthy, educated and treated fairly. (I keep a separate notebook for work)

5. Breakfast or Lunch with friends.

I know brilliant, funny, insightful women. I love sharing a meal with them.

6. Devotion time.

This is an opportunity to hear God and connect with the Divine. It brings me direction, purpose and courage.

7. Piano.

I don’t play in public but I love to play and sing when no one else is home.

8. Read a book.

9. Call:

my sister, mom or best friend.

10. Take a nap.

11. Spend time with my dogs and horses.

Autism scares me.

Autism sucks. There. I said it.

I love my kid. I love his all consuming zest for Legos, architecture, graphic novels, art, the Bible. I could get past the overstimulation, the bluntness of speech, the lack of social niceties.

What I hate most is being afraid.

I’m afraid all the time.

I am scared for my kiddo—that his feelings will be hurt when he’s not included. That other kids will tease or exclude him and it’s better for him not to notice than to notice and be emotionally wounded.

Every time my son has a meltdown, I am afraid.

I am frightened for his future—will he be able to have a job and live on his own as an adult?

I am afraid of my own reputation: do people think I’m a bad mom? That I let my child run wild because I don’t discipline properly? I was disinvited from a family Bible study years ago because my child was “unruly.” Looking at you, CAV.

And now I’m terrified that my child will be taken from me.

This fear was realized when my son was taken to a psychiatric inpatient facility from his school. We trusted his school—his guidance counselor, the administrative deans, the teachers—to care for and about him. There were so many times that day he was distressed (as recognized by the guidance counselor) and he had no tools in this new school to cope and no recognizable safe people to lean on.

The one person who seemed to care ended up Baker Acting my child rather than investigating his file and interviewing me to determine what was happening.

I can’t seem to recover from this incident.

It was the worst day of my life.

Every time my children encounter a police officer, I feel afraid. Every time I send my children to school, I feel afraid.

And I’ve heard from so many other parents of children with autism that they are afraid too. This is their biggest fear. I am making my voice heard so that children with autism can be treated kindly, fairly and with justice. So that they won’t be inappropriately removed from homes with loving, competent parents because their school doesn’t know what else to do with them.

I have met with school administrators, high level county administrators, autism experts and I will not rest until I am reassured that our children will be given the appropriate education for which they have a constitutional right.

Because there is no place for fear.

My courage comes from the many messages of love and support I’ve received. People check in with me to see how we are doing and I am so grateful for their care. Recently, I was able to escape to my one of my favorite places on earth for a weekend. As luck would have it, a professional training at the same location was the following week. God takes such good care of me–and I know that God cares for my son even more than I do. God’s love manifested through people gives me strength to continue in spite of fear.

Thanks to all of you for the love and light you lift on my behalf. I’m ever grateful. Keep the prayers coming because this mama is tired of feeling tired and afraid.