Hidden Disabilities

Parenting is not easy (says this wise & experienced momma, ha ha, whose eldest is a mere 7 years old ;-) ) but when you add hidden/non-visible needs to the mix it is a whole different ball-game, requires a huge shift in parenting paradigm - something I am trying hard to make, but am not sure how well I am doing.

One of our precious children has a genetic condition, a chromosomal deletion, that not only has physical manifestations but also comes with a whole host of 'non-visible' components (learning disabilities, anxiety, autism spectrum, impulsivity, social immaturity, working memory problems, OCD,  & ADHD just to name a few). This deletion is a 'spectrum disorder' which means that our child may have all 180 of the manifestations and all to the nth degree or they may have 2 of them which are mild in presentation. There is no textbook, or Dr, or class, that can tell us what to expect, how to deal with the challenges, how these things will impact our child and to what degree they are present... so we are doing our best to roll with it, to be aware of the potential challenges and try to respond accordingly when they are presented... and then there are days/seasons like now when it is just plain hard.

I feel like I am constantly trying to discern 'was this behavior deliberate? was it related to the deletion/lack of comprehension/working memory/anxiety etc etc? were my expectations inappropriate/unrealistic?' all so that I can respond appropriately in the moment to my child and the behavior issue we are having... And then there are times when I'm in default mode, parenting the old way where my thinking is 'they are old enough, they should be able to do this/know better/follow instruction!' and I don't take into account the hidden needs, which is just so wrong. I'm learning that expecting what is not possible is unfair. You wouldn't ask a child with a broken leg to perform on the high-wire at the circus, that would be impossible/setting them up to fail... which is what I inadvertently do all the time with my child with hidden disabilities, or even worse, discipline my child for not doing something that they weren't yet capable of doing in the first place! Yet at the same time you wouldn't assume that just because a child is sitting on the ground that they cant walk... so you try to teach them to behave/respond in the right way - to be kind and caring, to show respect to others, to obey/follow instructions, to be honest etc.

This is the tension, trying to determine what expectations are to be expected because they are attainable and realistic and which others (while age appropriate) are not possible for my child and if I persist in expecting them is like butting my head against a brick wall...and the fear that if my child cant learn these things that they will have repercussions in their life - which are not consequences of intention but the result of the way their brain works. Thats the kicker with hidden needs - my child appears as if they get it all, that their brain is functioning typically but not everyone that my child interacts with knows and understands their uniqueness/their needs (something I am still trying to figure out!)... There are those who have been made aware of it that cant seem to respond with exception but insist on pounding the square peg into the round hole :( For example, I know that my child has a very hard time with impulse control (which manifests itself in MANY different ways), so we make exceptions for that/try to work on it but we understand that it is a big issue. Others who aren't aware of that are less accommodating when our precious one is not able to stay on their own rest mat at school, but persist in rolling around and talking loudly, seemingly disregarding the teachers instructions to be quiet and still (yep, got kicked out of school for that one- even with the needs known & explained, but because its not visible...) Or how about when our sweet one interrupts their teacher constantly after being given numerous (hundreds!) reminders to raise their hand and wait to be called on, and yet they still cant do it so they get disciplined for interrupting, appearing to be rude and disobedient, not following the rules of the classroom... But yet I understand the teachers dilemma because I face it every day at home! How do you make it all work? make allowance for the child with the hidden needs yet at the expense of the others who can't rest because of the loud child who is all over the place?

It is so hard when the external appearance is that of a person whose brain functions normally and can comprehend whats been said and respond appropriately - but what is happening on the inside is completely different.

Appreciate prayers in this parenting marathon for incredible wisdom, discernment, patience, creativity, and lots of love because there are days when it is *so* hard.