“The first time anyone noticed that my son was different was when he was 7 months old. He learned to crawl and would do so right into the other babies, knocking them down. When he learned to walk, he’d toddle and knock over the other little ones. When he learned to run, he’d knock everyone right over. It was almost like he didn’t see the other kids. If he wanted to go somewhere, anyone in his path was in trouble. We struggled with speech and intense meltdowns early in life. His first 3.5 years of life, I taught preschool at the same childcare that he attended. He had the most amazing teachers and little friends, and best accommodations. We couldn’t have been blessed with more amazing people in his little life. They loved him, supported me and I’m forever thankful for them. The word ‘autism’ was thrown around quite a lot during his toddler and early preschool life and to be honest, it scared me. I had only known and taught severely autistic children. In my core I just knew he wasn’t, but I couldn’t stop that nagging ‘what if.’ I knew that God had gifted me with the most amazing, sweet and silly little boy, but also had to come to grips with the fact I was struggling with how to be the best parent, while also parenting his little brother, who was born just 12 months and 11 days after him (definitely unplanned!). There were a lot of tears, anxiety and prayers.
I remember one time when he was around 1.5 years old and his brother was just a baby, he was crying so hard and just wouldn’t stop. He had such limited communication and I couldn’t figure out what he wanted. Nothing was working – not food, milk, love, toys, cartoons, I was so overwhelmed that I packed them both up in my car and drove an hour to my mom’s house, knowing the car ride would calm everyone down. I can still remember tearily calling my mom telling her we’d be there soon for a surprise trip. We’d frequently take trips there because it was a break out of our routine and I was surrounded by people who unconditionally loved my kiddo and didn’t care or want to put a label on him.
He started speech therapy at 2.5 years old and received a behavioral specialist when he was 3. At that time, he was assessed for autism and it came out negative. I felt a big relief, but we were still struggling. I was struggling the most with feeling like a bad mother. I loved this little guy with my whole heart but didn’t know how to fix this.
Right around 3.5 years old, I became a stay-at-home mom, something I had wanted to do since he was born and my photography career started growing. I knew it would be a good move for all of us to take a break and start over. He attended a part-time preschool at our church, and made such amazing gains. I felt God moving in our lives so rapidly. He attended there for 2 years and by the time it was time for preschool, he no longer had special teachers or IEP (Individualized Education Program). I remember when he ‘graduated’ from Berks County Intermediate Unit I felt hopeful, but also very alone. He no longer had the support system. I felt like we were going into kindergarten blind. Looking back, I wish he would have had an IEP so that accommodations could have been started immediately, but kindergarten went as well as I had thought. Academically, he was and is an ‘average’ kid, struggling just a little in reading and writing, personal space and some emotional outbursts. His kindergarten teacher was fabulous and such a great support for him and me. She is such a special soul and I was double blessed for my younger son to have her as his teacher this year.
This year, in first grade, he was matched with the most incredible teacher that has a special education and reading specialist background and was able to really help accommodate some of the things he struggled with almost immediately. Although some accommodations were put in place, he continued to struggle with personal space – as he has since a baby, hyperactivity and focus. He connected with his teacher immediately and frequently would tell me he didn’t like school but liked his teacher. He started going to a reading specialist for 30 minutes a day which has been great for him. His teacher this year uses an app called Class DoJo, in which she can assign positive and negative points based on behavior. I would sometimes get anxiety looking at it to see how his day was going, never knowing what to expect. Life is a bit like a rollercoaster.
We finally got an ADHD diagnosis this month and started a low dose of medication, as well as a multi-vitamin gummy with fish oil, which supports brain health, and a routine of essential oils. We’ve seen some good changes and I’m really hopeful for the future. Everyone that comes in contact with my sweet boy tells me how much they love him and how wonderful, smart and sweet he is. He has loved hard his whole life and I’m so grateful to God for granting me the privilege to be his momma. I can see the light at the end of the tunnel.
Throughout his almost 7 years, one the most exhausting parts has been feeling like we are in limbo. We are in this world between special needs and typical kids. It’s isolating at times because we are neither. I know there are so many people in the same boat as us, but no one is waving a ‘My kid has ADHD’ flag and I haven’t found a support system that isn’t on Facebook. ADHD is physically invisible. My kid looks typical. He’s pretty cute. He sounds typical. He can carry on a conversation with you. He attends a typical school with typical peers, but needs accommodations. He plays soccer, but we’ve come to the conclusion that we’ll never be ‘sideline parents.’ (You know those parents that drop off their kids and sit on the sidelines) I volunteer to be the assistant coach, because I can be right there if he needs reminders – which he will – to stay in line, keep his hands to himself and focus on the coach. We go to birthday parties and play dates, but I stay close by to guide him through social situations. Anything over-stimulating – trampolines, bounce houses, ball pits – are places where anxiety runs high and his hyper-activity level increases. In turn, my anxiety runs high and I feel a fight or flight.
Life does become easier all the time. He’s a good kid. On most days, I feel like I can breathe. I can tell him to do something and he does. He enjoys going to school and has a positive relationship with his brother and friends. He is helpful and sweet. He loves cats, stuffed animals, video games, although he doesn’t play too often, and loves something fierce. We don’t go a day without 100 hugs, kisses and ‘I Love Yous.’ He dances like a wild man to worship music at school and loves to cuddle on the couch.
One of my main fears is that he will miss out on friendships because some social cues are over his head. I am thankful he has many awesome friends and we have been very blessed. I have learned to give my fears over to God, knowing that he created him in his image and he loves him exactly the way he is. If you are a parent navigating this life, know you are not alone. Celebrate the victories, big and small, support your child, figure out what motivates them and makes them tick and love them hard – we don’t know how long we have in this life.”
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