A phrase I hear quite often is, “I don’t know how you do it.” I don’t always know the correct response, so I usually just smile and take it as the compliment I think they intend it to be. I am not sure what they are seeing from their perspective. Are they seeing Jacob throwing himself to the ground in a temper tantrum? Are they seeing him frustrated when he can’t communicate his needs? Are they seeing me as a frustrated mom trying to do my best with the situation? Are they seeing him as a happy child? I see all of these things.
I try very hard to make sure that no one sees the times that I am frustrated, especially Jacob. This is difficult to do on some days, but all moms deal with this feeling whether your child is special needs, or not. We all try to be the best we can be for our family.
Jacob has times that he gets upset and it usually comes from a place of frustration. I am letting him explore his world more so that he can make sense of it. Since many things overwhelm him, slowly giving him freedom allows him to grow. About a year ago, if we would go out to public places, I would have to hold his hand the entire time and if I would ever let go, he would run off into the street or other dangerous areas. Now, I can let him run for a little while and even though I still won’t let him get very far, it is still a great feeling for the both of us! At the end of the day, Jacob just wants to be a nine-year-old boy that likes to explore his surroundings.
One of the biggest events of the year in our community is the County Fair. It is a week filled with parades, livestock shows, and carnival rides. We like to attend every year and Jacob loves all of the rides, but it can be difficult for him to wait patiently in lines for his turn. However, this year, I was very proud of how well he was able to patiently await his turn. We had a few rough moments but he did well considering that it was quite hot outside, there were a lot of people, and there was, of course, a lot of noise. He even waited patiently while his sister was on a ride that he was too tall to go on, which I expected a full meltdown from because he wasn’t able to participate. It was a huge moment for him!
I never know what kind of day Jacob will have or what will make him show certain behaviors. It seems like it is different every time, which adds to the feelings of frustration because I don’t know what is making him feel upset. Since his communication skills are lacking, he is unable to tell me what is wrong or how to fix it. I sometimes feel that I am being judged on my reactions. Jacob may look like a typically developing child, but when he starts to talk, you can notice a delay. There have been several instances where Jacob has accidentally knocked down another child, and most people have been very understanding once they figure out our situation, however, I fear the day that the other family will not understand.
Jacob is special in so many ways, and he reminds me of that all the time by doing things that surprise me! I am constantly asking myself if I am doing enough for him, and I also have to balance that with not doing too much for him. There are many days that I feel like I am failing as a mom. I get overwhelmed, just as Jacob does, and it can be hard figuring out exactly what he is thinking. There has also been a huge learning curve since he is unable communicate like a typical child. I have the same frustrations with my daughter, who is typically developing.
As parents, we all face the same challenge of giving our children the best. It is a delicate balance that is different for every child no matter their abilities.
There are times that I get upset when things aren’t going well. On those days, I have to take a step back, regroup, and try again. I try to remember that there will be days when things are not okay, but there is nothing wrong with that. Life isn’t perfect all the time. We have to make the best of the situations we are in and only then can we see perfection in the imperfect.