Category Archives: advocacy

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.

Advertisements

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. 

 

 

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.

IEP violations and Civil Rights

I’ve learned some things about advocacy.

I suppose that’s a benefit to this horrible situation: navigating bureaucracy and finding resources and people who understand.

Every child is entitled to an appropriate education and if that is being denied: call Disability Rights. Every state has a chapter per federal regulations to oversee states compliance with IDEA and ADA guidelines. The Florida organization, located in Tallahassee, covers our entire state.

They provide attorneys and advocates and charge the county for their services.

And they track systemic issues so that even if you decide not to utilize their services, there is value in reporting IEP violations or other problems.

My child’s civil rights have been violated. My family is traumatized. My son is still not in school. But we are making progress sitting through the fountain of red tape and we have hope for resolution. I’ll keep you posted.

One Child is Too Many

I met today with a professional autism specialist/advocate we have worked closely with for years to discuss my son’s recent unjust institutionalization.

She shared that 12. TWELVE. children she works with were “Baker Acted” (held inpatient for psychiatric evaluation) the first day of school.

Some of whom are elementary school aged. And..apparently baker act isn’t the worst thing. Some of her students were tased or handcuffed.

THIS MUST END.

This speaks of an egregious lack of leadership. When we value every child, when we provide teachers training and resources, when school resource officers are used to keep children safe and not as disciplinarians, then perhaps we will see change.

If you are navigating a school situation with a child who has special needs, I urge you to contact http://www.disabilityrightsflorida.org. They will provide free representation via advocate and attorney who specialize in disability rights. And even if you choose to hire a different attorney, they track incidences and look for patterns in counties reflecting systemic problems.

And they get it. You’re not alone–promise.