Rebecca Daniels Perin, known to many as Bec, has been traveling and writing for years, sharing her work and experience with small grassroots organizations, nonprofits, and a few greeting card companies. Her work has been included and published in self-help books, compilations, and magazines. Her humor, perspective, and emotion bleed through her writing.
While she holds multiple degrees, the highest a master’s degree in Special Education, she credits the bulk of her professional and personal success to life experience and personal interest. “I have an exhausting passion for the unknown. Plus, I’m a mom. The two sort of fit together like a perfect little puzzle… and, give me lots to write about.”
In 2011, after much speculation by many, Bec and her brood were welcomed into the world of Autism. Welcomed?—Meaning, her youngest was given a diagnosis of Autism, and she was given the Autism How-To-Manual. Realizing those three pages weren’t going to be enough, she sought to find answers, and her life became focused on research, learning, and understanding this new journey.
After a few years, and a few more diagnoses, she decided to retreat back to her own passion and love—writing. Her writing has shifted and changed from stories of the road to tales of motherhood, wifehood, and her humorous, yet heartfelt, perspective of her family’s journey through the world of Autism and Type 1 Diabetes.
She blogs daily at Autism Uncensored about her son, Liam, who has Autism Spectrum Disorder, Sensory Processing Disorder, and Receptive- Expressive Language Disorder. While Liam is the focus, she has no problem laying out her uncensored version of parenthood, talking openly about her own Asperger’s diagnosis, and dropping random, humorous one-liners about life’s shenanigans. She continues her humor as one of the Facebook admins at The Real Housewives of Autism, a group of hilarious Autism moms figuring it out as they go along. She has also recently started sharing thoughts at Gen X Extremely Uncensored Parenting and The Art of Love and Sometimes War.
IEP. Did you ever think you could value and despise an acronym so much? As a parent of a child with Autism Spectrum Disorder, I have sat through my fair share of IEP meetings. Some people have wonderfully, positive experiences with this process. But for some, it can be a gut wrenching, blood curdling, heartbreaking, enraging, shattering experience. They want to discuss your child—your child in black and white, on several pieces of paper before you, as if it’s that simple.
My first IEP meeting, oh the first one—it’s laughable now. I walked in, earning no respect from the team. They saw a hippie—a naïve, uninformed, mother who had no clue. In fact, I think I said, “I have no clue what I’m doing.” I knew so little. I was underestimated, intimidated, didn’t fully understand my son’s diagnosis, and had no point of reference for what we were experiencing. I walked out trying to process all the things I had heard, but the thing I remember most—I instinctually knew I had to become a fighter, a warrior. I had been called to battle. Not just any battle, I had been called to fight for my son. You may be thinking, you pulled that from one IEP meeting? It was that bad? NO. The first one, aside from my complete ignorance, felt like it went well-- of course it did. I didn’t know to ask the hard questions, for specific services, to question, that I didn’t have to sign anything I didn’t agree with. There was a boat load I didn’t know. They were pleased I accepted everything they offered. We exchanged pleasantries, handshakes, and it was over. It was when I was sitting in my car, crying like a baby, literally screaming at no one and everyone, that, “He is more! He’s more that what you said! There’s so much more inside him! Help him! They have to help him!” And it came over me, “You are his mother. You help him.”
Days ran into weeks, which turned into months, and then years. Like many of you, all the time I didn’t spend caring for my son went to research. Autism became my passion, my call, my purpose because it was a very complex part of my child. I began to understand the importance of the IEP meeting. I learned to be assertive, confident, to come armed with all the knowledge, evidence, and data. I became an advocate for my son.
Along the way, I earned a master’s degree in special education. The tables turned, yet again. Now, it was me sitting across from the mom and dad seeking answers, the parents in their first IEP meeting, the single mom or dad taking off work to attend—it was me who had to explain their child in black and white. How was I going to do it? I wanted to sit next to them, be gentle with my words, and make sure they understood I have their child’s best interest at heart.
The first IEP meeting I was a part of as a teacher was nerve racking. I knew it was coming for a month. I spent time gathering all the information. I wanted to present the best, most useful, educational view of their child. I spent ten minutes in the bathroom before the meeting. My heart was racing, my palms were sweaty, and I was giving myself a “You can do this” pep talk. “They may cry. You don’t. You stay strong, look her right in the eyes, and say, “Hey, I will do this. I understand. He is getting my best.” If she gets angry, you calm her fears. She’s afraid, just like you were. You have to make her see you care. You’re a mom too. She may not agree. Give her space. Let her voice her opinions. This is not personal. This is important.” I gathered myself up, and went to the MEETING. The clock struck one, and no one showed. By 1:15, the team had sealed this child up in a little package, removed his speech services, among other things-- despite all of my arguments. I walked out feeling like I had a long road ahead of me. How many of my students would have no one representing them across the table from us? Light bulb: You’re not only fighting for your child anymore.
The next went better. They were much like me: nervous, anxious, hungry for answers, but too afraid to ask. It was my moment to give back. I wanted to give them the care I hadn’t always been given. I spent an hour with them, answering every question, listening to their concerns, collaborating on their view of their child’s needs. I was shot looks from staff members. Looks saying, “Ok, stop patting their asses, and let’s move on.” And, I shot back, my “Make time, it’s OUR job,” look.
As a parent, I had to earn, and sometimes carve out, respect. I had to do the same as a teacher. I’ve learned to balance-- to keep one hand on the school’s island, and reach the other hand across to pull the parents over. Ultimately, when I think about the IEP meeting with parents and school personnel—my position is to be the bridge—to connect the district and the parents. It’s my job to listen to all the information, to collaborate, and make sure the child’s best interest are being considered and served. I want parents to walk out of a meeting with me feeling like the information they received was well supported, their concerns were heard and valued, and their child has someone on their school team ready to go to bat for them. I want them to feel like someone “gets it.”
My time in IEP meetings has taught me to look for a friend. And if I don’t find one, I bring one in the form of an advocate.
Til the next IEP meeting… stay strong, and remember, as a parent, you bring expertise to the table you couldn’t buy, steal, or fake.
A Special Education Teacher