From the beginning of the pandemic, I knew something was not right with my two year old. At first, I just chalked it up to the pandemic and the changes that brought for everyone. My daughter was used to having all of my attention all the time. At the time I was a stay at home parent and so our days were spent going to the library, going to music class and doing things just the two of us. All of a sudden her whole world was turned upside down and it was no longer just she and I. It was now her plus her brother and sister. My husband was suddenly working from home and we were all under one roof all the time. Everything she and I did, and everything our family did outside of our home, was suspended for the time being. I was doing my best to teach my older school-aged kiddos and yet provide activities for her to do while we were working on schoolwork. She would sit with us at the kitchen table with Playdoh, various activities and coloring books etc. It seemed that she wouldn’t be able to stick with something for very long. I realize she was two so maybe that was a reasonable expectation. Once summer rolled around, things were still difficult but seemingly more manageable. If something had her interest, she could last longer.
Because of her age and when her birthday is, we already knew that we were going to have her do two years of pre-K as she was born in September right before the cut off. We opted to enroll her in a play school to give her some socialization before starting Pre-K the following Fall. She lasted two days. Two. Days. She was so busy and was having a hard time doing much of anything that required her to sit and focus. After that first week of attempted play school, I remember sobbing as she took her afternoon nap. How had I failed her? We worked so hard over the summer to mask and to feel comfortable with that. We talked about what play school would be like. I felt angry. I felt angry that instead of working with us, we were asked to take a break. I was worried for her future. How would we possibly get her ready for school if we couldn’t even do a simple play school? I felt like a failure as a mom.
On a whim one day, a week or so later, I called a preschool that had a three year old program and l that I knew other friends had sent their kids to. They had an opening and were very willing to take her even after I explained what had happened. It was not easy for them, but she learned so much and her teachers worked with us to help her be her best self. She grew leaps and bounds and we were so grateful for their care and help as we navigated preschool in a pandemic and a child who needed a lot of help with self-regulation. During that school year, we also took her to be evaluated by an occupational therapist to see if she needed help with fine motor skills and with ability to regulate herself. It turned out she did.
We went into the school year of her pre-K year hoping that the behaviors we were seeing were because of immaturity and only compounded by the pandemic. We were hopeful things would get better and that we would “outgrow” this. It turned out that things did not get better. She would have good days and she would have days that were difficult. Eventually we discussed with her teacher the idea of an evaluation to determine if an IEP was needed. We were completely on board to get her whatever help she needed because as hard as a label is, it is important to give our kids every resource and fighting chance they will need to succeed. After the evaluation period, it was determined that she did need an IEP. It was an adaptive IEP for behavior. I remember initially hearing the words “behavior IEP.” I was caught off guard because to me a behavior IEP was for kids who had extreme behavior issues and were in danger of hurting themselves or someone else. This was not her. We quickly came to understand that this was for the supports being put in place to help her in her school environment. For a preschooler, it was built in breaks, visual supports, access to a para etc. It was just things to help her find success during her day.
I remember the meeting where we discussed their findings and point blank asking the AEA professional, “Do you think she has ADHD?” She was not sure because of her age being only four. We decided to pursue an outside evaluation to once again do right by our child and give her every help we could possibly find. The frustrating part was the waiting. I called the Center for Disabilities and Development at the University of Iowa to see how to get her in to see someone. They told me we need to fill out paperwork and her teacher needed to fill out paperwork. They would schedule us once everything came back. About a month after we sent everything in, we got a call to schedule her. When they offered a date, I was once again taken aback. ‘We can get you in 10 months from now.” On the other end of the phone, my jaw dropped and the scheduler assured me that I had in fact heard right. They also said because we lived close to the Stead Family Children’s Hospital, we could be placed on a cancellation list and would be given a higher priority because we are local. While I was happy to hear that, I felt frustrated once again. Here we were trying to do our best for our child, and we would have to wait for quite some time to even get her in. At this point, she would be over half way through her second year of Pre-K. As frustrating as that was, we took the appointment and hoped we could get her in sooner. Low and behold a month later, we got a call and they had a cancellation for the next day. We took that appointment and got her in to get the ball rolling on this.
Upon evaluation, it was determined that she did in fact have ADHD as well as some sensory processing issues. It felt good to finally be able to put a label on this. We felt relief that this was not all in our heads. The best we could do now was to move forward and get her on the best path to success. So now what? What did we need to do?
One of the first questions I asked was about medication. Did she need meds? What does that even look like for a four year old? We learned that there are such varying opinions on meds vs no meds, what type of meds, age etc. We opted to try her on a non-stimulant because it would slow her down a bit to be able to focus, to realize what is happening around her and to give her a little more body awareness.
The next question I asked was how this would change things at school. We learned that having an official diagnosis does not change anything on her IEP or what they are doing at school. They already have things in place to best serve her. The diagnosis just puts a name on it and could give her other accommodations when she gets older such as longer time for tests, etc.
How are we coping?
I have to admit our days are challenging. I would sometimes hold my breath when picking her up from preschool the last two years, hoping she had had a good day. When those good days were had, I would let out an exhale that was full of relief. Some days it feels like she is just going and going and going like the “Energizer Bunny.” I have said to my husband on more than one occasion that I do not know how to be her mom some days. He will always remind me that I do. He said all we can do is do our best and do our best for her and that is enough. I have to remember that on the days that I lose my patience. Unfortunately it happens more than I care to admit. Even on those hard days, I will sometimes take a step back and marvel at her. I will marvel at how kind she is. I will marvel at all of the amazing things she can do. I will marvel at how incredibly intelligent she is. I will marvel at how empathetic she is. It is qualities like those that remind me that she will be okay in this world.
What have we learned?
We have learned a lot in this whole process. My best piece of advice is to trust your gut when something feels off. Talk to your pediatrician. Talk to friends who have similar kids or who work with kids like your child. Quite honestly, I don’t know if we would be where we are without one of my closest friends. She was the one who suggested we seek out a developmental pediatrician. We did this blindly as we had zero experience with this. This turned out to be one of the best things we could have done for her.
Don’t be afraid to ask the hard questions. They say ignorance is bliss but when it comes to our kids, we need to do our best to give them what they need even when the answers are hard pills to swallow.
Don’t be afraid of what others think. I have spent way too much of my life worrying about what others think. See also: high school. It is something I have struggled with for most of my life. I have grown out of it, but at times I get wrapped up in how I am perceived. I work hard to let that go. When it comes to our kids we have to realize this is our journey. No one knows our kids better than we do. When people judge us or judge our kids, we have to realize that more likely than not, they do not understand. When people stare or when people make comments and offer their unsolicited advice, we have to let that go. From the early days of these struggles before a diagnosis, I blamed myself. Maybe I did not do enough to teach her. Maybe she did not get enough attention during the early days of the pandemic. You name it, I blamed myself. The truth is this is how she is. This is how she was made. As her parents we need to do our best to help her succeed and learn to advocate for herself. When people make comments or stare, educate them. Remind them of what your daily walk looks like. When we can educate others on a child’s diagnosis or condition, it brings about an awareness. It brings about education. When we know better, we do better.
Remember a diagnosis of any kind of disorder is only a small part of who they are. Find all of the amazing things that make them who they are and celebrate that. Even on the days that are particularly challenging, remember they are unique and beautiful individuals and that should always be celebrated. Do what you can to stay positive and continue to encourage your child even on the hardest of days.
The last thing is take time for yourself, too. Go on walks or date nights with your spouse. Find a counselor who can help you navigate this journey. Whatever self-care looks like for you, do that. We can only be a good parent when we have taken time to better ourselves and take care of ourselves.
The journey of parenthood is not for the faint of heart–especially when you have a complex child. Remember that you are the best advocate for your child and you know your child best. Try to block out all of the noise and lies and judgements the world tells us. Ask the questions. Seek out the doctors and occupational therapists. Seek out support groups. Do the best you can and that is enough. And most importantly: every day remind your child how much you love them and how proud you are of them. That is among the greatest gifts we can ever give our kids.