True confession: my child having special needs is the most isolating thing I’ve ever experienced.
Granted, foster care, in and of itself is similar in that lots of people don’t understand it or necessarily even understand why you would choose to foster. But later on in our journey, when addressing the special needs of a child, especially one who doesn’t present with outward medical issues and appears “normal” or “typical” on the outside… this has been, by far, the most misunderstood aspect of my parenting experience.
And the thing that I think most people don’t understand about a child with special needs is that the child didn’t choose to be different. Sometimes it’s the effects of choices other people have made. Or it is due to abuse or neglect suffered at the hands of the very people who should have been caring for and protecting them. Or sometimes it’s something that spontaneously happens in utero. There are many reasons why a child could be called “special needs” and while trauma and abuse are a couple of them (and the ones I am most familiar with parenting), it all falls under the same large umbrella and isn’t something people need to steer away from… even if it can be scary or intimidating simply by virtue of the fact that you don’t have much experience with it.
I will freely admit that before I entered into the world of foster care and adoption (and really the the whole world of special-needs), I did not get it. I felt like I tried to, at least on some level… but I really did not. I didn’t go the extra mile, I didn’t try to walk side-by-side with someone as they were experiencing the ups and downs of parenting a special needs child. I really just stood on the sideline and watched and, if I’m being completely transparent… I judged that which I did not understand. I don’t know that I shied away, so much, as I just didn’t get it.
And I’m not saying that’s why I am feeling watched and judged now… It’s not because of what I did or didn’t do, or what I did or didn’t know; it’s simply because that’s how it is. I can’t make anyone walk beside me or be empathetic or try to understand what it’s like. They would have to choose that for themselves.
But sometimes parenting special needs is like being on an island. And it’s only me and my child together on this island. And when we are there, we do just fine. We work hard on learning new skills, regulation, etc. But anytime we step off the island, someone is often quick to remind us that we are not typical, we are not “normal” and they quickly escort us right back to the island… through their rude, harsh or thoughtless words or actions.
Truth be told, I’ve gotten pretty comfortable with being on the island. And much of the time I’m okay when I’m there, because I can’t be judged when it’s just the two of us who are of similar mind and spirit, right? But it’s when I choose to put us out there, off the island, and, frankly, open ourselves up for judgment… that’s when the harsh reality comes.
People will say they understand what I’m experiencing, but they don’t. They could not possibly fully comprehend because they have not lived it. And while I appreciate their seeming desire to get it, I know that they can’t because back before this was my journey, I thought I understood… but I did not in any way, shape or form.
In MY personal experience, special needs parenting means constantly laying aside any shred of pride I might have and just be there with and for my child… to help regulate, redirect or whatever it is that he needs in a specific moment. If he’s struggling then I can’t worry what other people are thinking about him or me… whatever judgement it is they want to think to themselves or remark to others. I don’t always have to hear it… it’s generally obvious by their words, posturing and/or behavior.
And you might be reading this and thinking, “Well, Kris… what would you have them do? Your child is the one who is not obeying!” So let me say one thing and then give you a simple suggestion: my child is not choosing to disobey; he is dysregulated and he needs help being brought back into being regulated, and THEN I can help him make a good/better choice.
So in order to help (if anyone out there is actually asking): if you see that my child is struggling, the simple gesture of asking your neurotypical child to help my child would mean so much. When my child is stuck in his perseverance and doesn’t want to come inside, or leave, or “switch gears from what he’s doing”… maybe ask your child to model the appropriate/desired behavior and stop what he’s doing and leave, or go inside, or switch to a new activity.
That simple action is so meaningful and helpful to a child who is struggling. It might not seem like much, but trust me when I tell you it is huge. If nothing else, it shows the struggling child (and his mama) that there is some amount of solidarity in the attempt to regulate. And as an aside, chances are that it’s quite possibly going to become a much bigger issue if we can’t work together and help him be successful instead of struggling… so it’s better to work together at the outset, right?
He’s not wanting to be this way; he’s not a “bad kid”… he’s simply a struggling child who needs people to rally around him and help him.
So clearly you can understand why I have been reluctant to say anything, especially on this blog… because this kind of talk doesn’t necessarily draw people to foster care.
But it should.
And it can.
We need people… we need people who want to understand, and want to be all in. Who can can walk alongside and be there for the difficult and not-so-difficult.
And this point brings me to another point I have mentioned in the past, but definitely bears repeating: this is the very reason why we all need a support system. You might think, going in to foster parenting, that you have “all this support” and I hope and pray you are right… that your current support system will continue to be there for you.
But, in many instances, a good part of that support falls away when things get difficult… by virtue of the fact that they just don’t understand… which is why I always encourage families to find support and standing with others who have walked this path. And while this tribe might not understand the details of your specific circumstances, they understand the overall and over-arching events which may have led to a child having struggles… and are more likely to be supportive when things get tough.
Now also: don’t hear what I’m not saying… not all of the kids who come into care have the same issues as my son… but they will have trauma which can present itself in many different ways. I’m just trying to prepare new or potential foster parents as best I can… because this journey is not for the faint of heart, or for going alone.
Sincerely,
Kris