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My daughter didn’t need an IEP, my daughter needed me!

small girl seriousLet me tell you about our journey, our struggle, and our unusual solution.

At the age of six my daughter had already been expelled from two preschools for aggressive behavior.  She also had picked up three diagnoses:  ADHD, Oppositional Defiant Disorder and Sensory Processing Disorder.  We finally got her into the public preschool at our local elementary school where they were legally bound to keep her in the program. She then transitioned to the kindergarten in the classroom next door. We decided not to opt for medication based on our own experiences. Instead, we tried holistic approaches, natural remedies, allergy testing, and other therapies. Nothing helped enough to keep her in line in school.

As the diagnostic testing was being done, she was accepted into our local charter school which was supposed to be the best one around. And in some ways it was. They provided a lot of interest-led learning opportunities and offered a well-rounded arts education.

No matter how many accommodations we put into place through her IEP, she was still unable to have safe behavior in school. She was putting herself, other children and adults at risk. It was affecting her self-esteem and she started to become anxious and depressed.  In second grade, she ended up with two teachers — one who was brand new and another who was retiring. The teachers couldn’t handle her behavior, which grew worse as Christmas break approached. As their frustration grew and tempers shortened, they began publicly humiliating her, even harshly scolding her in front of the whole class! Once, the older teacher asked my daughter’s best friend “Do you want to be friends with someone who acts like that?” while my daughter was standing there.

Near the end of second grade, the school proposed a 45 day evaluation at a behavioral based program. As a special education advocate and former family partner at a CBHI wraparound program, I knew that this was not the answer for my daughter. She was in behavioral after school and summer programs and it only exacerbated the problem. She does better with typical children who set high standards and expectations for her.

At that point I was desperate. I spoke to a friend who was homeschooling and after copious amounts of research we decided to spend the summer as part of the homeschooling community. We went to field trips, social get-togethers, and other events, tried out different curriculums, etc… She had her difficult moments on field trips, but I was there to help her get through them. She had her days where she couldn’t absorb curriculum in the morning, but I was available to save it for the afternoon. Now that is an individualized education plan!

We found my daughter was about a year ahead of her 3rd grade classmates and started using 4th grade curriculum which interested her. Her anxiety level significantly dropped which improved her behavior greatly. My anxiety decreased because I don’t get those midday phone calls from the principal.  Best of all… she was happy!!! Her confidence and self-esteem soared! She made new, more appropriate friends. And the other parents were so understanding of children with different needs!

We decided in the fall to continue with homeschooling. The services on her IEP would continue to be provided by the local school. She would be eligible to continue her occupational therapy services and I could have consults with the special education teacher and behaviorist.  But a few months into the school year we realized we didn’t need them anymore! It’s nice to know that with the IEP still in place, if she is in need of services they will be available.

Homeschooling is a great option for many children with mental health issues. Just the lack of social and academic pressure from school has amazing effects!  You need no teaching or special license. You would be surprised to learn that a whole day’s worth of curriculum at the early elementary level fits into about 2 to 3 hours when it is one on one at home!  And there are many online and virtual schools if high school seems intimidating. The key is, talk to other homeschoolers to see if it’s right for you. Try it out for the summer. Join a Facebook group like New England Happy Homeschoolers.

Adrienne McDougall is our guest blogger.  Some days she is advocating for her daughter and her clients while other days she drives hot rods and sings songs in her band.  She hopes that sharing her experiences will help other parents.

Ask me a question, I’ll tell you a story

tell your story 2I felt a wrench in my heart when I stopped running support groups.  It wasn’t the late nights or trying to make each one worthwhile.  It wasn’t even that I had some version of burnout (I didn’t).  It was missing out on the next installment of everyone’s story.  I knew by then that even the parents who seemed to have things under control were often living a version of Mr. Toad’s Wild Ride.

There was Joe, who worked in construction and got up in the dark every morning, yet drove around several nights each week trying to find his 15 year old son.  He knew his son was using a variety of drugs and he also knew if he could keep him safe for a few more weeks, there would be a slot in a program for him.  There was Annabelle whose son, Bobby, tried to jump out of 2nd story school window when he was 9.  She fought to get him in a therapeutic program and when she finally did, her own mental health problems surged up.  There were Rick and Susan, who problem solved like crazy to make sure their daughter graduated high school.  She would only eat one kind of pizza, sold several towns away, so they would drive those miles several times each week to avert the obsessive, restrictive food focus that bled into other parts of her life.

I wondered if Joe’s son got into the program and if it helped.  I worried that Annabelle was so exhausted from fighting for services and wellness for her son that she had no energy left to battle for herself.  I fervently hoped that Rick and Susan – who did so much to get that diploma – got their daughter into a college and that she stayed enrolled.  And I wondered if they all thought about my story and my son’s journey, too.

Support groups are ground zero for telling your story.  There is no wrong way to share it.  You can make it short and hit the high points.  You can ramble, cry, smile and pick up the thread.  You can tell it all at once or in installments.  Others will nod, maybe comment or offer help and you know they are your comrades in arms, fighting the good fight with you.

Talking about your experiences in a support group can be therapeutic.  Others can see where you sailed through and where you were flying by the seat of your pants.  They might jump in and point you to resources you need or suggest strategies you haven’t thought of.  You learn what parts of your story make others sit up and nod and what parts don’t get the same reaction.  While you are getting help, you are also learning to tell your story.

For many of us, there comes a time when you decide to tell your story publicly to someone else.  Maybe it’s a journalist, maybe it’s a legislator, maybe it’s an audience of people who’ve never raised a child with mental health needs.  You want them to understand, to be moved, to feel the injustice, the hurt and the determination to make things better.  You are willing to forgo your privacy and expose your pain in order to help the families coming along behind you.  You want to make a difference.

Storytelling is one of the most powerful tools we have.  It is the medium for translating emotions and experiences into action.  Personal stories can educate about challenges and inspire people to do something about them.  Leaders often call great stories “inspiring” while journalists call them “compelling.”   But most of us have to learn key storytelling skills.  We start by knowing we have a story to tell and it deserves to be told well.

When you tell your story in a more public way, you consider other things as well.  Your time (or print space) is limited, so you focus on what aspect you’d like to tell.  If you want to make a point about lack of services or too-high-to-jump-over barriers, you think of what would be most dramatic things to highlight.  Sometimes you choose the parts that are most likely to help the families coming along behind you.   As Patricia Miles writes, this is the first skill set of family partners: the decision to blend their private story with their public role.

Telling your story isn’t only about touching people or creating change in the system that serves our kids and families.  Just as the stories from Joe and Annabelle and Rick and Susan stayed with me, our stories stay with the people who hear them.  After someone hears a parent tell their story, I am often asked – sometimes a year later – what happened to that youth or those parents?  Did the young person get better or achieve their promise?  Did the parents leave those times of crisis behind and become able to step back a little?  Or if I was the one who told my own story they ask, How is your son doing?  We often have no idea who remembers us and who is rooting for us.  And that’s actually pretty cool.

Change, they say, happens one person at a time.  Just like storytelling.