I am writing this 13 years into my parenting journey and 8 years after I first voiced concern about my son to his teacher in 1st grade. Long, agonizing story short, he was passed on year after year as “too young” and “fine” and “not a behavior problem”. The school evaluations we did manage to secure found nothing aside from some executive functioning deficits that “didn’t require specialized education”. Fast forward to 8th grade: he was failing and several independent evaluations determined my son had the following slew of diagnoses: Autism Level 2 ADHD Anxiety Auditory Processing Disorder OCD Dyscalculia (Specific Learning Disability in Math) Dysgraphia (Developmental Coordination Disorder/DCD) Pragmatic Language Deficit Sensory Processing Disorder Social Anxiety Communication Disorder Visual Processing Disorders While I did the best I could with who I was and what I knew at the time, I did it all “wrong”. I struggle with immense guilt, frustration and regrets. I was trusting and quiet. I allowed others to make me second guess myself. I am choosing to channel all of those feelings into my mission to help other parents and children avoid a similar prolonged journey by bringing you the information and resources you need to do it better and from the start. If I had the journey to do all over again, here is a short list of the most critical things I would tell myself at the start… Do Trust Your Gut When my son had to be pried from my body every morning for all of his preschool years, I suspected something was up. Shouldn’t he have adjusted by now? When he couldn’t form his letters correctly, despite loads of practice, when numbers didn’t seem to make sense to him, when he would forget a concept from problem to problem, I knew something was up. I can’t even count the number of friends, family members and professionals who told me I was “just looking for things that were wrong” or “just being a nervous first time mom” or that he was “just giving me a hard time.” My gut knew that he was HAVING a hard time and guess what? I was right, all along. Trust your gut and don’t let anyone make you question it. Don’t Rely On the District to Guide You We took advantage of every teacher conference and always brought our concerns to those meetings. No one ever once said, “You can/should/could request an evaluation.” No one even said “I agree you should look into this.” He was good and quiet and smart and could rely on his strengths to get through each day, falling apart as soon as he walked out the door. When I was told by the team that he only needed a 504 and accommodations, I didn’t question it. I mean, they are the experts, right? It’s their duty by law to adequately assess and support every student, correct? Yes, it is. Unfortunately, it is also in their best interests to follow the letter of the law and not offer, suggest or give more than a parent asks for. Educate yourself about what is available and adequate for your child (or seek out someone who knows) and ask for those things explicitly and adamantly. Do Be the Squeaky Wheel Explicit and adamant are not always enough. Unfortunately, special education resources are like a pie and there are far more children who need pie than there are pieces to dole out. If you are concerned about being “nice”, not rocking the boat, about being a bother or annoying, or about creating a contentious situation, your child may not get what they need. Be as loud as it takes, as often as you need to be and for as long as it takes. The squeaky wheel gets the oil. Don’t Wait and See. EVER. I fell hard for the “it’s so early” and “he’s too young” and “we don’t do that here” jargon. While it’s never too late to address deficits and learn new skills, earlier is ALWAYS better in terms of how long it will take and how much effort it will require for your child. Wait and see is code for “I want to pass this scenario down the line”, among other things. Do Write Everything Down AND Keep/Organize It One of my biggest regrets in discussing all of these concerns those first few years verbally and with my son’s teachers. I have zero proof that I ever expressed my concerns to anyone or that they didn’t do anything about those concerns. I’ve spent hours searching for report cards, test results, email correspondence and more. From day one of your gut being triggered, start a chronological log (use a Google doc for example) with entries by date, the most recent being at the top. At minimum, create a file folder in your email account and move all correspondence on this issue to that file. Any concern you want to express, any evaluation or support you want to request, put it in writing with the date and send it to both the teacher and appropriate administrator (email will suffice). Don’t Accept “We Don’t Do That Here” As An Answer If you are told, in response to a request, that “we don’t do that here”, ask them to show you the law in writing. For example, when I asked to record our IEP meeting (which is permissible by law in Pa) I was told I could not. When asked why, the Supervisor of Special Education replied “we don’t do that here.” When my advocate presented her with the law stating that I could she replied, “Well, yes, but we just usually don’t.” Ummm “We prefer not to” is not the same as “by law we do not have to or you are not permitted to.” Do Find (& Bring) Your People I fought SO hard for SO long and, toward the end, I meant business. I created slideshows with data to bring to the meetings. I wrote novels in advance of meetings. I researched signs and symptoms and correlated those with his data. And so on. I got absolutely nowhere until I nearly broke and brought in an advocate. It was then and only then that they truly started listening and put the wheels in motion. I often wonder how our journey would be different had I brought her on from the start or anywhere along the way. We are fortunate in our area to have many excellent private advocates, ones who offer a sliding scale and non-profits who may help advocate at no cost to your family. Even if you simply bring a friend or family member to the table as an extra pair of ears or to take notes, you will be better off. They may have seven people on their side of the in-person or virtual table. That can feel incredibly intimidating when you are the only one on yours. You weren’t meant to parent alone and this journey adds a whole new layer to needing a village. Your friends may never have been in your position of having a child with special needs or having to fight to get them what they need. Find and surround yourself with those who do. Speaking of needing a village, we’ve got you and, now, you’ve got us. Wherever you are on this journey, learn more about many ways and places, both virtually and in-person, you can connect with experts and parents “who get it” on our Find Your Community page and our Events calendar.