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. 

 

 

Home Coming

Researchers say the sense of smell holds the longest memory.

I believe it.

This weekend, I enjoyed a long walk down memory lane.

I exited my vehicle and stepped into the dusty parking lot, exhilarated at the prospects of sitting in rocking chairs alongside old friends and disconnecting from recent stressors.

Registration went smoothly as a familiar face greeted me with a hug and issued my cabin assignment and name tag. I was ready for a Camp Team Member reunion.

I walked around the grounds with a million thoughts competing in my mind.

I smelled the musty chapel and was instantly transported to 26 years ago when I first entered this space as a tween girl. Stained glass windows are present no longer (and are missed) but the clear glass replacing them enhances the natural beauty and I accepted the change.

I caught the fresh, fishy aroma of Lake Griffin and breathed in deep.

I entered a cabin (#3) and caught my breath in the delightful smell of old carpet and mildew and plastic.

I was home.

Other senses caught me, too:

The rustling of the plastic mattresses, easier to clean than to rest comfortably.

The sight of the beautiful cross on the lake, newly lit with LED bulbs that glowed blue at night but still somehow felt the same.

The feel of the itchy grass, mosquitoes and wind in my hair.

The camp food: predictable salad bar, mystery meat (Chinese style) served on spaghetti noodles with a garlic breadstick?; breakfast waffles and bacon.

They were all served on classic trays and don’t forget to “Stack yo’ dishes!!”

The camp snacks: Zebra cakes and chilled root beer from a glass bottle. And the nacho bar and ice cream sundae bar because I think I must still be a teenager who doesn’t need to count calories.

Every step I took, I sunk into Camp a little more deeply.

I set foot here and am instantly filled with a thousand memories of people I met, people I loved. Of looking for God and peace and purpose.

Veggie Tales. The Fruits of the Spirit song. (I can still sing it!) Indiana Jones’ Leap of Faith. Caedmon’s Call.

I see the ghost of my past self, sneaking out of my cabin just once, trying desperately to appease campers and fellow Team members. And getting caught, scared to death I’d be sent home.

Going to breakfast on Monday mornings in pajamas because there were no campers until the afternoon. 100 team members piling into busses for Wet’n’Wild water park, Christian concerts and Sunday morning church. Garfield’s restaurant where we colored on the paper tablecloths and Chili’s for Saturday dinner where we obnoxiously sang their baby back rib song.

We listened to morning devotions as the sun rose over the lake, shining directly into our faces as we tried to pay attention to the speaker.

I sense the spirits of those who have been before me; those who found Jesus, their Calling and for some, even their spouse here.

I see in my mind the empty chapel before me filled with children and teens worshipping, laughing, crying, dancing.

Silly and obvious dance motions to old camp songs.

“Pharaoh, Pharaoh”, anyone?

Bare feet behind the altar, leading worship on the keyboard.

Makeup free fresh faces, pony tails and messy hair, sweaty bodies grateful for the roar of air conditioning, arms raised praising God.

Praying for our campers, and for each other.

Weekly communion–with big loaves of Hawaiian bread. Savoring the blessed leftovers; grateful for the late night snack.

This sacred space whispers of peace, joy, Love.

I feel time becomes different, shifting from chronos to kairos. Linear to circular. Human time to God’s time.

My daughter begins to learn 4 square here. I explain the rules and demonstrate the proper serve.

“Mom, are you crying again?” she observed several times over this weekend.

And then I find the prayer room–now housing stacks of chairs–where I remember earnestly praying that I would someday have children who would be as blessed as I in this space.

I am reminded: God keeps promises. Faithfulness is a standard God has demonstrated first by example.

I had forgotten the intensity of God’s love somehow. This Love that passionately calls to those who have been cast aside, marginalized and considered afflicted.

Camp is a place where God reveals through nature and through other flawed, spirit filled humans consistently:

You are loved. You are special. I want you. You are Mine.

Welcome Home.

A second try for middle school

We have decided to try a middle school recommended at the IEP meeting.

Note: Many people have suggested homeschooling or private school. I toured several private schools in our county, and many have wonderful programs for children with autism, combining behavioral therapy with academics.

As appealing as those options sound, they’re not feasible in our case at the present time.

My husband and I both work. We have more than one child. Pulling our child out of public school and driving him twice daily, paying a great deal out of pocket in private school fees, or supervising/entertaining/educating/socializing him every day is a tall order that adds unbearable strain to a family already stressed to our limits. “Just —-” isn’t as simple as it sounds.

So when we scheduled an emergency IEP meeting, it was with the intention of sending our child to a school with strong leadership, effective communication and positive culture for students with special needs.

In essence, where his IEP would be communicated and implemented.

In the meeting, despite pressure to return our son to his original school–from where he was institutionalized–we stood firm that this is not a safe option for him and unacceptable to us. We have zero confidence in administration after what our family endured.

Essentially, the arguments for “meeting kids in the neighborhood” rang hollow for us.

A principal of a neighboring middle school attended this meeting (it’s like they knew we wouldn’t consider returning him to the original school!) and explained in detail how her particular school would accommodate my son.

(So the team defined his needs and then the school will work to meet them, instead of trying to make my son fit into a system)

In the meeting, it was suggested we meet with teachers and staff ahead of time.

I couldn’t help but explain the numerous efforts we had made to do so at his previous school but we had been told that was too hard to accommodate.

In this meeting, we were affirmed in our reasonable request and received an apology that we hadn’t been accommodated.

We emphasized that he will make triggering statements again, that he will continue to engage in self injurious behavior, and that we are deeply worried we will end up with our child institutionalized again.

As a result, we put in his IEP that he is not to have the school resource officer become one of his preferred persons at school. We added in extra behavior supports. We have new assessments scheduled to better teach and support our child as he learns how to transition and how to cope with stress.

I have also added a non-consent form to each of my children’s file. More on that later.

This meeting was 3 hours long, and did not include rehashing the past incident. We remained focused on putting in place accommodations that will allow our child to be successful and to thrive.

Following the IEP , we drove our son to the new school.

The principal was waiting for us! She had guidance, administrators, and the friendliest 8th grader I have ever had the pleasure of meeting to greet us and give us a tour after school ended for the day.

They were friendly, kind and gentle. They showed our child many options for where to eat lunch, how to ask for help, and which hallways would be the least crowded.

He received his school planner and learned how to assemble his binder.

They plan to have him attend school the first day and just spend time with guidance and administrators, getting acclimated to the sounds and sensory stimuli of the school. They have art for him to do and will allow him to desensitize at his own pace.

They are planning to add one class at a time each day to break him in gently.

Their kindness and sensitivity to us brings me to tears.

We realize this is a long road but we are committed to supporting our child and to advocating for his quality of life.

We still have legal aspects to handle, but our primary goal was to get our child into an appropriate, safe educational program as quickly as possible.

Step 1: ✅ check.

Fighting for my child

I entered my child’s IEP meeting armed with a 4″ binder overflowing with my child’s life history … and an advocate.

An IEP is an individualized education plan for children with special needs. It is federally mandated and public schools must implement and follow per federal law.

My husband and I had sorted our tasks and goals into separate lines of priorities with getting our son in a safe school first and foremost.

So we engaged Disability Rights Florida for legal advocacy and representation in navigating our child’s IEP as we recover from his inappropriate Baker Act.

DRF is a federally mandated organization dedicated to defending the rights of any person with documented disability. Because our child’s rights were violated, they will advocate with us to get him the education he needs and is entitled to. They also will help us pursue compensatory education if deemed appropriate. They are funded through Social Security Administration, the Administration for Children and Families, and several other administrations.

If you think or know your own child is not getting an appropriate education, call them. They offer free services if they can take your case.

We called them and did an initial intake. I emailed my son’s IEP and behavior intervention plan and reviewed the circumstances of his Baker Act.

They took our case and requested our son’s comprehensive file from the school board.

Our advocate called in to our scheduled IEP meeting and had clear questions and concerns on our behalf. She asked many questions to clarify nuances and was highly effective.

I highly recommend always having an advocate in some way, shape or form at an IEP meeting.

Another option in Brevard County is the Family Liaison Project. They are funded through Brevard County Public Schools. We have not paid for advocates, although some people have reported positive experiences with them.

I’ve learned in IEP meetings: that if I ask for certain supports and am told no, I can ask for a list of criteria that would be used to determine support. I can ask for documentation of policies and procedures and for clear timelines. In statements we disagreed with, our advocate had the meeting notes amended to reflect our disagreement or changed.

We were reminded by our advocate that we aren’t just lucky to be at the IEP meeting: we are integral members and the school is required to invite us.

Our county grants families access to use “out of area” requests for school placement. We considered jumping to this option instead of navigating another cumbersome IEP but decided that working with the system:

1. forces the system to work better and
2. puts the burden of transportation on the school.

Our child deserves a free and appropriate public education.

The school system has to accommodate him and must learn to do better for all students with special needs.

We have spoken with many attorneys and it seems we do have a legal case with our child’s civil rights being violated. We haven’t decided how to proceed regarding this yet.

We are still feeling residual effects of trauma but we are coping.