Parenting is no walk in the park. There is no guidebook for being a good parent, and many parents will seek advice from other parents or (auditory gasp) their own parents! Sometimes you encounter a situation where you have nowhere to turn, and the only thing you can do is rely on your own instincts to navigate a situation.
That’s the predicament my wife and I found ourselves in the fall of 2014 with our youngest son. Growing up, parenting was romanticized. The movies and tv shows I rarely watched, if ever, navigated families with children who have special needs. As I got older, it never really occurred to me that I would have a child who would have special needs, and I had not encountered parents who had children with special needs like autism. We have two older children about two to four years older than our youngest son, who do not have special needs, so we knew something was different with our youngest.
There were warning signs or “early signs” that set our youngest apart from his peers and his brothers. The biggest was a severe speech delay. His one-word utterances and lack of speech were concerning to us. He also did not play pretend games. There were some signs of obsessive interests, like watching certain YouTube video on repeat or focusing on farm animals. He also seemed to lack awareness of his body in space. These concerns told us that we needed help in understanding what was happening.
Here’s where things got a little crazy. We took him for an early intervention analysis for autism, and the person conducting the analysis told us that he had a speech delay. After about an hour of playing with our son and attempting to ask him and to us, this was after about an hour of playing with our son. Upon hearing this diagnosis, my wife and I wanted to feel relief, and I think I tricked myself into feeling a little bit relieved. Internally, we both had this gut feeling that that wasn’t the right diagnosis, though. We knew we needed to trust our instincts and get a second opinion.
We got a second diagnosis throughout the school district, and after three different evaluation periods, we got a diagnosis that our son has autism. It was like a massive punch to the gut. I hurt for my son, wondering what his life would be like now and in the future. I selfishly hurt for my wife and myself, thinking about how our lives would change. I hurt for my older boys knowing their lives would be impacted. We wondered if vaccinations had hurt him (we know they didn’t). We wondered if it was something we had done. We had all of this anxiety and pain stemming largely from a place of ignorance. It didn’t last long because, as parents, your duty is to collect yourself and start doing everything you can to get your kids the things they need to have the best chance at having the best life possible. It was scary, but we knew we needed to make some changes in our lives.
Here are some of the things we did that have helped us to navigate our son’s autism diagnosis:
- We recognized our son as an individual. We decided that we would encourage him to do the things for which he had a passion. This has been a wild journey. We have a designated area where our son spends part of his day painting, coloring, and drawing (sometimes on paper, and sometimes on himself). He is interested in making videos on the iPhone and iPads, so we allow him to download the apps he can use to create his own videos. We support and encourage his passions so that there is a possibility that they can be put to good use in his life.
- We recognized the need to be flexible with him so that we could be a good support system. To that end, we have moved to three different cities to find the services he needs and the best education possible.
- We set short-term and long-term goals for him. We discovered that our son was a treasure box. We never knew what he was hiding, but when he revealed it to us, we often felt marveled by it. For example, our son taught himself to read by age 3. We used that surprise to set up the goal to use it to our advantage to help develop his speech. The long-term goal is to have functional communication with other people, but the short-term goal has been to increase the length of utterances in his speech word-by-word.
- We spend time together as a family. We include our youngest son in the family game night and start the night off with a game he likes or is willing to play. After losing interest, we switch to a better game for the older kids and us. The same can be done with television or movie nights.
- All of the previous things mentioned would not be possible if we didn’t commit ourselves to maintain hope. Having hope is no easy task. Quite frankly, it’s easy to become discouraged or even frustrated. However, we know that every kid is different and responds differently to interventions. We don’t know what will happen in the future, but our hope lies in the fact that we know our son will always feel the love from his family and that our commitment to him will help him become the best version of himself.