Hey, other autistic spectrum moms and dads . . .
So your little bundle of joy is entering the school system! YOU’RE NOT ALONE!!! Congratulations on making it to this milestone. I know it hasn’t been an easy road and was paved with plenty of blood, sweat, tears and multiple child care providers. While you thought it was difficult just finding a preschool that would take your ASD child, the public school system is a whole different beast. Now I will stress the importance of an excellent LCSW and/or caseworker. Science knows that I would’ve had a break down without her.
We have been to three different schools, in three different states this year alone. In each of them, the enrollment process was painful, to say the least. I relocated to South Carolina prior to my son entering kindergarten, and it was an utter nightmare. The school didn’t immediately recognize my son for services, despite my repeated attempts to tell them he needed them, and they delayed his start by two weeks so they could acquire the adequate capacity to care. With the change in his routine, my son flipped out and reverted to some extremely bad habits I thought were broken over a year ago. He was a holy terror. The teachers didn’t know how to speak to him, or instruct him. He figured out how to manipulate their system to get what he wanted. The IEP meetings were a disaster, and I frequently came away from them crying. I was picking my son up early from school three and four days a week. As you can guess, this was a failed experiment in South Carolina.
Off to North Carolina we went, with our tails between our legs, I needed help with my son and I was at a loss after the South Carolina experiment. We entered the North Carolina system, where the school was better for both my son and I. The school we entered had a program designed for kids on the spectrum. While this school was a better fit and my son began to show some educational growth, I still believe he could have received better care at school. I still frequently had to either attend school or pick him up from school due to various behavioral issues. We had the opportunity to move to Tennessee, and we jumped at the opportunity. We dived right into another IEP plan, except this go around, I didn’t cry—everything was as smooth as chunky peanut butter.
But through this experience, I have the following advice . . .
You got this. While it does seem daunting, and it is . . . it is for the educational benefit of your child. For that, I don’t know about you, but I’m willing to do just about anything. It is completely natural to be freaking the f— out. I did too. Remember to take care of yourself. Do not let the stress get to you; this too shall pass, and you are building a better future for your child in spite of the school system. I aggressively found my center by doing yoga to Tool or Killswitch . . . who says yoga has to be peaceful? This is a process. It is long. It is arduous. But hopefully, the outcome is worth the tears and the sweat.
I cannot stress this enough. Support is the key to raising a child, any child . . . but especially a special needs child. Join parenting groups, single or otherwise. If your family is around and involved, accept the help!!!! Get involved in the PTA (fight off the super stay at home moms in the momclub, it's worth it. Eventually you will find your mom tribe). My son has his team of caregivers and therapists, and I have my own LCSW who helps me with all the daily stressors. How do I pay for this, what can I do about that, what is this new behavior and how do I handle it, how can I achieve “me” time, how can I poop alone (this was solved with an iPad). Our LCSW is a statistical anomaly, and I can only hope you receive one half this good. If the LCSW you do have is dreadful, don’t be afraid to ask for another. Sometimes personalities don’t vibe, and it’s incredibly important that you utilize the LCSW on your team to achieve a better outcome. Our LCSW has even gone so far as to help me find transportation when my truck broke down last month. I can’t begin to tell you how many times I have called her on the verge of tears with some new disaster. She always calmly listens and provides outside support, and 80% of the time finds me a path that I can travel. With that being said, don’t let the IEP board see you cry. Hold it in, when you leave the meeting, cry in your car. Your child isn’t awful; they do have faults, and they do need special considerations to maintain a learning environment in a typical scholastic environment. It doesn’t change the wonderful little human being you are socializing. Once you’ve let out the tears, go ahead and order a pizza and drink an ice-cold beer, you deserve it. My personal preference is Dale's Pale Ale out of Brevard, NC—but to each his or her own. Wallow a bit, the IEP meeting is over, and that’s one hurdle down!
Is how I adult. I wake up in the morning and instantly hit the on button for coffee and disappear into the bathroom. I like my coffee at a steady ⅓ ratio . . . ⅓ coffee, ⅓ milk, ⅓ sugar. I know I will likely catch diabetes, but I’ve got needs, and I walk six miles a day. I think I can have this small indulgence. If you can make it through this experience or really any experience without coffee, I salute you. My life is in shambles without coffee. But it is possible to be too caffeinated. I had this occur at my first IEP meeting in South Carolina. I showed up all keyed up on espresso. I was over-adulting. I had all of my son’s paperwork paper clipped and copied so that every single person in that meeting had a copy of every single diagnostic paperwork I could put my hands on. The director of special education was not a typist, and I was on the verge of abrupt rudeness regarding my patience with the hen pecking on the computer. I was pumped and ready to fight for my son, perhaps a tad too ready.
Be the advocate.
You are the person who knows your child best. While the IEP team is wonderful and amazing, sometimes you will disagree. I almost flipped out at a nurse in South Carolina for suggesting my five-year-old go on ADD medication. I know that my family doesn’t react well to medication, and I don’t want my child to lose that vivacity that makes him who he is. I feel as though his energy level is a part of his personality. Yes, sometimes he is over-active, but that just means he needs a physical task, not medication to make him slow down. Prior to the IEP meeting, about a week or so before, start a list. On this list write all the great qualities about your child, things they love, favorite toys, rewards, etc. Also, write down things you have noticed about their learning habits—whether verbal learning is more important, or if they learn better in groups or solo. Gauge the areas you know they need help with, whether that area is academic, social, or neurological. What are their non-preferred tasks? How can meltdowns be averted? What are triggers for meltdowns and are their warning signs for the impending meltdown? I show up to each IEP looking like I’m prepped for battle. Which I am.
Know your rights.
This varies by state. But universally, know your child has a right to an education. Your child has a right to receive a capacity of care, which allows them to receive that aforementioned education. Contact your local autism society for specific laws in your area. While you are there, sign up for a support group, meet other special needs parents, or sign up for an autism event. GET INVOLVED!
Make a plan.
With the members of your special education team, decide what is best for the education of your child. I know during the change of routine my child thrived with sight boards. Sight boards have pictures of what the child associates the action with, for example, ours has a house for times when we are at home and a picture of his school for when it is school time. Ours is broken down by hours in the day and days of the week. Your schedule may vary, and that’s perfectly fine. Every ASD child is different and has their own vibe and routine. Talk with your ASD child and let them know what is going on (age appropriately) with their education. If they are verbal, you may want to ask what they love most about school and what they love least, and work on finding some common ground. I know mine is anti-school because it is too long. So we have broken down his day a bit more, in that he gets more time to do preferred tasks in between his non-preferred tasks (which are usually workbook pages).
REMEMBER!!! Success is measured by growth, not by where you start!