The families whose stories I share would not consider themselves normal. Of course, they don’t consider themselves super-heroes either. We completely normalize the things we do each day and it becomes our ‘normal’.
It is sometimes hard to tell the difference between regular, childhood or adolescent behaviour. We don’t react to things the same way that families with ‘normal’ children do. I hope that we can enlighten you as to why we engage in some of the strategies and coping mechanisms that we do. Mostly, it’s simple survival.
School is a scary place for us. Our kids look like every other kid walking through the door. They will, however, not react the same way to school and academics, that is guaranteed. Our job as parents is to advocate for our kids. That is the same for every parent. In a general sense our teachers tend to be the ones who alert the parent that there might be a problem. For those of us who already know that there is a problem it is often our job to convince the teacher that there is a problem.
Example: My son recently transferred to a very large school from a very small one. His teachers at his previous school were well acquainted with his issues and needs and we made the necessary adjustments. In this new school, I am finding myself tracking down every teacher and having a discussion with them about what the issues are and how we can help my son meet with success. This is exhausting and somewhat overwhelming. If he is going to succeed, he needs a lot of support. His teachers look at all the absences and assume he has a bad attitude and is lazy. The reality is that he is freaked out because the assignments he just received require huge amounts of reading, research and writing, three things that pose significant problems for him. But they don’t know that, they need to be informed.
Another scary place. A lot of kids with hidden disabilities that are of a psychological rather than physical source don’t have great social skills. They don’t read social cues. They are often inappropriate. They tend to abuse friendships. Often they are very insecure and come across as very controlling. They make friends, wring out all they can and move on, they don’t give much back to the relationship. Or, they simply don’t have friends at all.
As a family you watch this kind of thing go on and you start getting paranoid about throwing them into social situations like youth groups or play dates. You worry that no one will like them or understand them. You know that their method of playing isn’t always comfortable for the other kids. You worry that kids will like them too much and then will be taken advantage of by your kid, because they’re good at that.
Situations like camp and field trips are excruciating because you need to remind people of proper supervision for your child, or you end up chaperoning every single field trip. You have to prep the camp director and counsellor for your child and it just isn’t any fun relaying their history over and over and over again, but you can’t take chances for their sake and for the sake of the other kids involved.
Home is exhausting but the safest place to be. There are so many things that go on at home that aren’t pleasant. Home is the place where these kids wind out. They unravel, fall apart and generally destroy the peace and quiet that should be home. That ‘always on’ fight or flight mechanism gets tripped over the smallest incident and all hell breaks loose. It comes in various forms but it is always hard to deal with. We are very tired parents. Wondering when the next explosion is going to occur is more tiring than dealing with a newborn baby. (I can say that because I’ve had 6 newborns to deal with and I know!)
Some kids with hidden disabilities don’t have regular sleep patterns so they keep you up physically. However, the physical exhaustion doesn’t really hold a candle to the mental toll that living with them takes. We try to be one step ahead, trying to disable triggers before they occur, trying to difuse potentially dangerous situations. We are not only trying to keep ahead of the explosions and implosions but also trying to explain to the other children in the family why we deal differently with this kid. They don’t always get it.
We have escape plans for fire emergencies and for explosions. The kids know where to go and who to watch out for when things start flying. They are traumatized by the in-your-face actions of their sibling. So as a parent you are dealing with your stresses, their stresses and trying to head off the stresses of the kid in question. Try that for 14 years and see how perky you are!!
So sometimes we just choose to stay home because it’s easier than trying to explain why your kid stole something off your friend’s dresser. Sometimes it’s easier to just watch another movie than try to have a family board game that will result in pieces flying all over the room. Sometimes it is easier to just go on vacation by yourselves rather than meeting friends that don’t understand your child’s issues.
Friendships are hard work and sometimes we just don’t have the energy to keep up our end of the conversation.
On the other hand some of our most cathartic moments are finding another person whose kids are like yours and laughing yourself silly over the stuff they pull. It isn’t really funny but laughing is, at times, more healing than crying over it all again. Besides, we already did that.
**If you are new here you might want to know that this post is part of a series on hidden disabilities. I am going to be continuing this series for all of October as part of the 31 Days Challenge. You can see all of the amazing topics over at The Nester’s! To go back to the beginning of this series click on the Alphabet Soup tab and you can see the indexed list of chapters.