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Thursday, April 6, 2017

The Voice of God (aka- The Day Aidan Got His IEP)

Once in a while, I know the voice of God. It’s not that I hear it. I just know it. Like it has been written on the seat of my soul, on the walls of my heart.

I know, that sounds insane. But before you judge, or criticize, or think I’m loony, just hear me out.

A couple weeks ago, I finally got our school to give my 5th grader an Individualized Education Plan (IEP). This is extremely significant in the life of our family. Our four kids all have special needs, but they are the kind of needs that are “invisible.” If people looked at a snapshot of our family, you would see four adorable, blond, smiling faces, all who look “normal.” But they all have significant challenges, and their appearances are deceiving.

My kiddos struggle. A lot. With so many things that come easily and naturally to other children their ages. My children have a host of diagnoses, including Tourette Syndrome, ADHD, Sensory Processing Disorder, mood disorders, anxiety, and learning disabilities. Even though the kids have these official diagnoses, it is often difficult for me to obtain services for them because they look “normal.” Year after year, our school has said the kids do not need additional services at school because they are functioning well enough, and that their problems must be “home” issues, and parenting issues.

Year after year, I’ve received emails and calls from my children’s teachers, asking for help with my kids. What have we tried at home that is successful? What ideas do I have to help the kids at school? What should the teacher do? I’ve done my best to help guide and educate the teachers about my kids. I’ve racked my brain, trying to come up with more ways to help my kids succeed, both at home and school. Life shouldn’t be this hard for people who are so little.

Despite my best efforts, my kids still struggled at school. Teachers would contact me, at their wits’ end, not knowing how to proceed with my kids. So I would request a meeting with the team at school. We would get to the meeting, and I would express my concerns about my children’s growing troubles. The team would tell me that my child was fine. My child was acting fine, learning fine, doing fine. Implying that I was somehow overreacting, somehow wrong. That my child’s troubles were only at home. That despite the teachers repeatedly contacting me about their concerns, my child was fine and did not need additional services at school.

This message that I was somehow to blame for my children’s disabilities was a tough pill to swallow. Since the day each of my four preemies was born, I have been determined to help them be as happy and healthy as possible. I have spent zillions of hours with the kids at every kind of therapy you can imagine, listening and learning from our amazing therapists. I have been to countless doctors, begging for answers, begging for help. I have had to convince my husband that treatments not covered by insurance are vital to our children’s well-being, and we must find a way to pay for them out of pocket. I have done therapy homework with the kids, day after day. I have had to make the impossible decision about whether to use medication to help my children. I have driven them all over tarnation, looking for answers, searching for help. As all of our friends pile their kids into minivans to go to soccer or basketball, I load my littles in the van to go to more therapies, more doctors.

Don’t get me wrong, we do find time for fun and relaxation. But having a family with special needs is darn hard work. You’re on call ALL. THE. TIME. There is never ever a millisecond where you can disengage from the fact that your kid might need you. Even when they are at school, or with grandparents, or the once-in-a-while-miraculous-babysitter, you never know when you’ll get the call that your kid needs you. That your kid can’t handle life at that moment, and all they need is you. And you drop everything, day or night, and run to them. Because that’s your sole purpose in life- to make sure your babies live well, are happy, are loved and healthy.

When your entire existence revolves around guiding your children who have special needs through life, to have people tell you that your kids’ problems are because of you…that’s soul-shattering. You know it’s not true, but the seed of doubt has been planted. When people tell you that your kids just need a spanking, they just need tougher discipline, you worry that maybe they’re right. Maybe if you had been tougher on them all along, the kids wouldn’t have so many struggles now. You know that’s not true, but you worry just the same. When people tell you you’re crazy for driving an hour to see a special eye doctor and spending a fortune on glasses to help with visual processing disorder, a tiny voice in your head wonders if they’re right. You wonder if all the money you’ve spent on alternative interventions was a waste. You know it’s not true, but you doubt yourself, just a little. When your school says your children's problems are because of their home life, you wonder what you could be doing differently. You wonder why all your exhaustive efforts to do any and everything to help your little darlings isn’t working. All the reward charts, and therapy homework, and therapy visits, and hours in the car driving to appointments, and special glasses, and medication, and massages, and supplements, and…what if everyone is right, and the only problem your child has is you?

What if it’s all your fault?

Since my 5th grade boy was in Kindergarten, teachers have been asking me for help with him. He’s such a sweet boy, he’s got such a huge heart, he makes friends every single place we go, he’s kind and compassionate and sensitive. But he wiggles, he doesn’t pay attention, he can’t get organized, he doesn’t understand math, on and on goes the list of my boy’s alleged shortcomings. For six years, I’ve tried to work with my son’s teachers to help them help him. Each year, I would ask for a meeting when the teacher said he/she was at her wit’s end and didn’t know what else to do for my boy. Each year, I would sit at a meeting with up to fifteen school staff, who would tell me that my son didn’t qualify for more services than his 504 Plan would allow, and that he was fine.

My 5th grade boy is my third child. My twins, who are now freshmen in high school, have similar diagnoses and issues in school as my 5th grader. I had gone through the same run-around with my twins as they went through elementary and middle school. It wasn’t until we spent our own money for a private evaluation, hired a behavior consultant fluent in the diagnoses of Tourette Syndrome and anxiety, consulted a lawyer, and hired an advocate that I was able to educate the school well enough on my children’s needs that they agreed my kids needed more support.
So with my 5th grader, this ain’t my first rodeo. Been here, done this. Twice before. Imagine how many times I’ve been given the message that I’m not a good enough parent. From other people in my life, but also from our school. Imagine the determination and courage it takes to fight that message when it comes at you over and over for so many years. Imagine how hard it is to hold on to your strength and know that you are doing everything under the sun to help your children. Imagine how hard it is to fight that little voice of doubt that the world has planted, saying it’s my fault my children struggle.

I went to my 5th grader’s IEP meeting a couple weeks ago. Once again, I sat around a table with 10 school team members. Once again, I felt outnumbered. Once again, I worried my son wouldn’t qualify for the help he so desperately needs at school. Once again, I worried I might dissolve in a puddle of tears in front of all these people.

The team went through my son’s evaluations. They talked about test scores, performance in the classroom, his deficits. The doctor we hired to do a private evaluation talked about her insight into my son. Finally, after an intense hour, the team said my son qualifies for an IEP. After this announcement, there was silence as everyone looked down at their notes and computers. I waved my fist in the air and joyfully announced, “Hurray!”

My response may have been a little silly, but this jubilant moment that I’ve been fighting so hard for, for six years, deserved some recognition. Finally, my boy will get the help he’s been needing. Finally, he will have his needs better met at school. I truly, maybe naively, believe that our school does the best it can for its students. I admire and respect every teacher my children have had, and I know they work hard every day to help my kids. It’s just difficult for the world to know what to do when your kiddos have “invisible” special needs. But just because the needs are invisible, doesn’t mean they’re nonexistent.

I left my son’s IEP meeting and drove around, frantically running errands before the bus delivered my darlings home from school. I pondered the meeting. I reran the test scores in my head. I thought about the comments teachers and the social worker had made. I thought about what the director of Special Ed had said about what label my son qualified under for his IEP. I silently whispered a blessing of thanks to each member of the team who is helping my boy. I was grateful to our advocate for her patient help with all of my children. I was grateful to the doctor who spoke to the team about my son’s disabilities. I was grateful to all of them.

That’s when it happened, when I knew the voice of God. You can call it whatever you like- intuition, the voice of my soul, it doesn’t matter. It was like someone wrote on the inside of my heart: “YOU did this. YOU did this. It is because of YOU that your little boy got help today. YOU did this.”

I am proud to say this had been one IEP meeting where I had held it together and had not become a sobbing, hysterical mess. But when that message bamboozled its way into my consciousness, I lost it. I burst into tears. I sat in my car and wept. I wept with gratitude for that message, I cried with the relief that comes with knowing- truly believing- you have made a difference in your child’s life. For one moment, I accepted the foreign feeling of being proud of something I have done for my kids.

I realized I am quick to notice other people’s contributions to my children’s lives, but I rarely truly believe that I am doing a good job at being their Mama. I am so thankful for each person who helps my children. I am in awe of our therapists and doctors and teachers. I think they do amazing work with our kids, and we wouldn’t be in the place we are if it weren’t for all those people. But I never take time to pat myself on the back and believe that my children are as happy and healthy as they are in large part to me. I try to find the good in others, to make sure they know how much I love and appreciate them, but I don’t do the same for myself. So to have the knowledge nestled in my soul that the reason my son got an IEP was because I kept pushing, year after year, never giving up no matter how many times I had to sit in a lonely, intimidating, overwhelming meeting, no matter how many times I had to be subtly blamed for my child’s problems, no matter how many people think I’m crazy…the message that this success was because of me was profound.

As parents of kids with special needs, we are often quick to thank the gifted people who help our children. It is much more difficult to realize that we need to take credit too. It’s very hard to sit in a quiet moment and say to yourself, “Great job! You are rocking this parenting thing!” and believe it. We need to remember our children wouldn’t have access to those gifted therapists and doctors if it weren’t for us. Our children wouldn’t know love and acceptance if it weren’t for us. Am I a perfect parent? Absolutely not. But am I doing the best I can, all the time, no matter what the day brings us? Absolutely. We were given special children, and we need to make sure we give ourselves time to acknowledge and appreciate the work we tirelessly, endlessly, lovingly do to help our children be happy and healthy.

Take a moment. Take credit. You’re rockin’ this parenting thing! It’s because of YOU that your child is doing so well today.

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