1.17.2013

(invisible) needs

I have been stewing for quite some time about disabilities. Special needs. I didn't know what I wanted to say only that something was crystallizing in the recess of my brain. I know some awesome children with special medical, developmental, physical, and emotional needs. A few of them live in my house and I have the honor of being their mother.

Sometimes dealing with the symptoms of our particular special needs, the day to day grind is maddening. It can be mind-blowingly taxing. The things they do are so hard to deal with it strains my mind and body to stay calm from moment to moment. And sometimes my resolve breaks and my patience is gone and I mourn a false reality where I don't have to deal with this crud.

Tonight I am think of the other children I love and know with special needs. I have a few little buddies with Downs, one with Cerebral Palsy, and one with Epilepsy. These things cannot be cured, they are life-long conditions. The children can grow, learn, improve, and have amazing parents who facilitate these kids' therapies and teaching with strength, passion and love. But they do not operate these necessary therapies and steer their children on paths of support with the intent to fix them.

I think I have been making a large mistake and I need to rectify it. My son Tsega has some challenging sensory issues as a result of neglect in his early months. He also has some serious anxiety and some PTSD trigger issues. Blog readers have been incredibly supportive as I've searched high and low to find the right therapists to help him get on a path to healing and helping him become a functional person. What I have realized tonight, right this moment actually, is that I need to stop trying to fix my son. He needs help. I am gonna do everything in my human power and maybe a little outside of that to get him access to help for as long as he needs it. But my goal cannot be to fix my baby. I cannot undo it. And I can't get mad at him for the results, or the effects of what happened to him. Just like a parent of a Downs child cannot attempt to undo the genetic moment that brought an extra chromosome into the DNA, it's silly. It's pointless. My sacred responsibility is to instill my child with the sure knowledge that I love him to the ends of forever and that nothing that he experienced is his fault. That he is worthy, and perfect and that he cannot with his actions make me stop loving him.

I have to stop reacting. And even more essential, I have to stop expecting him to wake up one morning and stop having these issues. Stop thinking or wishing he can or might just behave like other three-year-olds. (Who let's face it, are are minions of the devil to being with. Age three really is the worst age. It's a miracle parents survive it.) Having a child with invisible or hard-to-discern special needs makes one question one's sanity. Because you start talking and everyone nods and says "yes this is normal, all kids do this." And then you know in your gut it's not true, because the therapists see it and know it's not true, but you question yourself and think Am I over-reacting? Is it really that bad? Today has not been that bad. This week hasn't even been that bad. Maybe I have made this whole thing up. Maybe I read too many other blogs of mothers with traumatized kids. Maybe I need to get out more, maybe things are getting better?


But then things happen that bring you back down to earth. Aaaah, yes, there they are again, the issues, waving Hi Mom, still here! You're not crazy!  You and your spouse remember the time when it used to be every six to eight weeks that you'd have to up the security in the house, and now in three or four days he's overcome the new locks and the gates and you don't know how to stay a step ahead. You sleep with one eye open, never ever touching a drop of a sleep aid or even looking at an Ambien or Tylenol PM because you have to be awake in case something happens or another kid cries because someone has turned on the lights in their room at 3am and is putting puzzle pieces on their face. You worry that next time it might not be puzzle pieces. And that Brady, who is too little and weak and has his own set of developmental delays, can't fight back; might not be able to tell you when he's being picked on accidentally by a kid who dissociates while doing stuff in the middle of the night.

In the -hopefully distant- future there is a decent chance our cars will be crashed. There is a chance there could be small fires and hospital time. Things will keep getting destroyed. And we will keep working on teaching, guiding and  therapy will be our friend for a loooong time. As this spunky kid gets older, there is a chance the shenanigans and confusion and frustrations will intensify, not go away. He will have to deal with consequences and so will we. But if I have learned anything by the last year of my life with my special boy, time does not heal PTSD. If I have learned anything by being apart of online support groups for parents with kids who look a whole lot like my kid, it is that at seven, eight, nine, the need for therapy and support continues. Sometimes things get worse before they better. I know families who's children need to go into residential psychiatric treatment because staying at home isn't safe anymore. Our newest therapist says it is smart to realize that anything is possible when dealing with trauma and to never assume it will just go away. We know, Hubs and I, she is right. We see it with our eyes.

I want to look at my child with all of his needs as a whole person. A kid with autism or Downs does not require fixing. Neither does my son. But he does needs a Mom who understands him and loves him and doesn't expect him to do anything other than the best he can. Just like a mom with a child with cerebral palsy would never think about putting him in his chair without his straps on or a helmet if he needs it because I need him to sit still in his chair today. I am done. I am tired of having a kid who needs this helmet. It takes too much time and I want him to not need it. I mean, that sounds stupid right? Well,  I am guilty of expecting my child to do more than he can do sometimes. I need to continually set Tsega up for success and be patient when he acts just the way he does. I need accept him as he is, help him be his best and keep him safe and healthy within the scope of his capabilities.

Healing. Not fixing. It's a subtle difference between those two things isn't it? He needs help healing from the traumatic events of his past and forging an understanding of himself so he can learn to navigate life confidently and lovingly. He doesn't need me to be on some war path of Making Him Stop Doing Stuff. How ridiculous is that? Speaking of stop doing stuff, oh Meal Times, why art thou so hideous? But there I go again. If he had a condition that made it hard for him to use his hands and from here to forever he was going to spill and make a mess, I as his mother would need to realize This is what he can do. Meal times are going to messy.

Maybe for Tsega, food and mealtimes will always be stressful. I hope not, but maybe they will be. Instead of expecting him to be different, maybe I should work towards helping alleviate that stress, supporting him  and comforting him instead of criticizing something largely out of his control. Maybe one could argue Well, he needs to learn to sit and eat with other people! Does he? Really? Let's project him into adulthood. He can do whatever the heck it takes to calm his stress. If that means always having a snack with him in a baggie in his pocket and eating standing at his job or quietly eating his lunch on the train instead of at a table that is a perfectly decent coping strategy. Maybe at dinner with his family he doesn't eat much or sit long, but he does his best and as soon as he can't stand it he gets out of there. As an adult, these things are simply quirks. As a kid, though, not being able to sit down and eat is an offense that draws wrath and frustration and condemnation. Why? Why expect him to more than he can do?  Because it makes life easier for me, sure. But of all the things we are trying to teach him, this one may not actually fall in the top important ones.


I am full of Maybes tonight. I am questioning why I get angry. Why I get frustrated and what is reasonable to except my specific child with his specific disabilities and abilities to do. And you can't answer that for me. Isn't that the kicker? We think we all know what kids should be able to do, need to learn to do, but with special needs, what is "normal" doesn't matter one whit. And Tsega's needs aren't obvious to the casual observer. Actually, a lot of special needs aren't. But we judge away at the really loud, screamy, naughty kids in stores and restaurants (me too, I say "we" on purpose) because we can't see the sensory processing disorder or the trauma or the autism. We see a parent about to lose her crap, or looking embarrassed. Or even worse, maybe we think she doesn't look embarrassed enough.

I need, effective now, to stop becoming mad at and embarrassed about my child. I want to stop feeling like a crummy mom when my child with special needs acts like a child with special needs. I want God to kick me solidly in the butt and help me end my frustration when days are hard. And I want to embark on a new reality wherein I set Tsega up for success and stop wishing he were different. Because how on earth will he ever believe me that I love him no matter what if I only act loving when he is behaving the way that makes my life easier?


Oh these are murky waters to navigate: Accepting my child where he is but trying to help him grow and achieve all he can. How much is pushing? What is helpful, and encouraging and what is counter productive and discouraging? At what point in the teaching does Tiger Mom turn into torturer? I suppose that is where all parents fall short and where all our children, special needs or not converge: reaching adulthood and having to figure out how much they are willing forgive us.

I hope it's a lot. I hope they forgive all of it. Because I do love you to the ends of forever, my perfect boy.

19 comments:

Leah said...

I am coming to terms with disabiity (is that even the correct word?) in my household as well. I always thought I was patient, but now I'm finding shortcomings in myself parentin special needs. I like how you have decided to look at it though. This may be lifelong. I always think. . . "maybe when he's 5. . . " But, I'm also realizing, maybe this will always be something we're workin on. It's all tough stuff.

S.A. said...

I work with children on the autism spectrum, most of whom have huge sensory needs. To adults that insist they simply need a firmer hand, that they are being 'brats' I use this analogy- if [student] was born with partial paralysis in his legs, that prevented him from running as fast as the other children, you wouldn't insist that if he just tried harder he could run faster. This is the case with our kiddos; they simply cannot sit still in a regular chair; their brains do not allow them to remain totally silent for 30 minutes straight. It is not a matter of willpower.
They can learn while pacing the back of the classroom, or while fiddling with a fidget toy. Different is just different. Not bad. Not worse. Just different. For some reason the 'legs' analogy works more often than any other way that I try to convey that our kids learn and cope differently, but are still chock full ability to learn and attend.

Maybe Tsega will the in the Olympics as a gymnast, or in the Xgames doing some crazy stunts, making scads of money, and then we will all exclaim with delight and admiration over the same impulses that make you want to duct tape him to the wall nowadays. :)

Sha Zam- said...

You are amazing. You are raising beautiful smart loving men and women. I love you. faults and all. Just the way you are. mmmwwaa

Mia said...

Totally thinking of my adopted brothers (who reacted to their childhood neglect and abuse with RAD and PAD) and my own son who is highly sensitive to the world around him, just like his mother. With Ethan and myself, we do so much to make our lives go as well as possible outside the home. So much so that few people would realize anything is different. But I tend to forget that I need to make those preparations when it's just us. Life at home would be so much easier if I didn't expect everyone to suddenly be "normal". I know that my dad and his wife have the same issues. They fully accepted the conditions and found ways to help them function in the world, especially for maneuvering it on their own, but when the boys are home, it's hard to remember to adjust and accommodate when with everyone else you can hug and talk and react without a buffer. Thank you for the reminder to stop trying to fix things! I very much needed it today. And many prayers that your wonderful boy is watched over when his impulses are leading him away from safety.

Holly said...

Thank you for another wonderful post. I am really struggling with trying to "fix" one of my twins these days (they were severely neglected for the first 5 months of her life, well their lives). She is 3 and has sensory issues, and maybe PTSD. I'm not really sure. We live in a small community and though she has some great therapist, no one is really adept at children from trauma backgrounds. And most people don't see what I see. I realize that much of the problem is me, my anger and my unmet expectations of how I think she should behave. It hit me hard at christmas. I think I finally realized that our lives truly have to change for her sake and for her healing. That christmas and birthdays won't look like what I always thought they would look like, that I have to let go of my anger about that and just love her enough to fight for her healing and health. The most surprising part of this is not the challenges she is facing, but rather may reaction to them. That has been the most humbling and hard part of the journey. Thank you again.

Rick and Melissa said...

Scoops I think that was inspired work. Not even kidding. I haven't posted on your blog for a long time. I think I needed to read that. I am having many of these thoughts about my little guy that is cookie's age. I love you. Meliss

Three Lads and a Lis said...

I cannot thank you enough for putting your emotions and words out there. So many of your words struck a cord with me and the journey I have been on as the mother of two special boys.

My two sons both have moderate hearing loss, they were hearing aids full time - they have been aided now for a year. Our oldest was 5.5 and our younger son 2.5 when they were diagnosed. Our oldest compensated for speech very well but our little guy, well a year and a half into intense speech therapy and he is finally progressing but at a snails pace.

I have had to give up on normal, what the heck is that anyway and take it one day at a time with him, one success at a time. He'll get there and even if his family may be the only ones that can ever understand him, that's okay too, I can't fix him - I can help him reach his full potential but he is who he is and I love him.

Amy said...

Yes, yes, and more yes. The trouble is, however, figuring out exactly what their limits are, and what is their best try/effort/etc? For my son, his abilities are variable. We have good days, and we have very, very hard days. On the good days, (which can easily morph into a hard day), our expectations can be fairly high. On a hard day, I am ashamed to admit I am often comparing him to his previous self and get very frustrated at his lack of abilities. It's a very tricky (and exhausting) balance game we play, compounded by the fact that many of these (dis)abilities are invisible to most people. You are an awesome writer (and mother)...thanks, again, for including us in your thought process and conversation.
Amy

Heather said...

Thank you for this honest, heartfelt post. This ...." Having a child with invisible or hard-to-discern special needs makes one question one's sanity. Because you start talking and everyone nods and says "yes this is normal, all kids do this." And then you know in your gut it's not true, because the therapists see it and know it's not true, but you question yourself and think Am I over-reacting? Is it really that bad? Today has not been that bad. This week hasn't even been that bad. Maybe I have made this whole thing up. Maybe I read too many other blogs of mothers with traumatized kids. Maybe I need to get out more, maybe things are getting better? "... is me. I have this conversation with myself and my husband a lot. I really appreciate you and your blog. It's so good to know we are not alone on this journey.

Barb Aloot said...

Yes, amen, yes! And thanks. I am struggling with exactly this - my own frustration about my expectations for my son's behavior and the annoyance of dealing with people who do not get it.

stmonicasbridge said...

My oldest, my only girl, the little girl who looks like me in almost every way was diagnosed at age 2 with autism and sensory processing disorder. Her diagnosis now is classic autism, sensory processing disorder and global developmental delays. My husband was on a "fix" mentality until another autism mom handed me the book "10 things every child with autism wishes you knew" by Ellen Notbohm. In it she quotes a young man with Aspergers who said something to the effect of I'm not broken, I don't need to be fixed. I'm not diseased, I don't need to be cured. After my husband read that we both cried some good and happy tears. Our daughter was never broken. She was perfect in God's eyes, we needed to realize that. Yes, she needs help. We still (at age six) have to bathe her and she has to be diapered and does not speak, however, she has made drastic improvements at her own pace and in God's time.

Realizing our beautiful, special children do not need to be fixed can be a wonderfully liberating feeling and allows us to love in ways we could never imagine.

kareydk said...

You have absolutely hit the nail right on the head. Our therapist said attachment/trauma behaviors never go away, they just morph into something else. And I'm guilty of trying to "fix." I need to concentrate on healing. Thank you for this. I'm trying to absorb it into every fiber of my being. Because my kid is an awesome kid. He's made tremendous progress with his special tramua-based, invisible-to-the-naked eye needs despite me, I think.

marymuses said...

Nodding and taking notes through this whole thing. This is so timely, as I am online shopping for fabric and poly pellets for Z's first weighted blanket. So. Yes. Thank you.

Cindy said...

Oh my goodness YES! I often feel very alone parenting a child with Invisible SN. I am sure people think I am a mean parent I they are listening in. Sigh.
Great post.

Kyra said...

This is a great post. I am often guilty of trying to "fix," usually with sterner-than-necessary words. On some subconscious level I must think that if I can fix the outward behavior, it will magically take care of the root issues. I need to work on this. There is nothing to fix. My little boys, like yours, are perfect at being themselves.

Claudia said...

Bravo. Yes, that, exactly.

Karina said...

As the mother of 3 special needs kids I can relate to everything you've said. It is such a difficult balance to navigate--because expecting too little is as dangerous as expecting too much. Sometimes the only way to gain proper perspective is to remove yourself from the situation for a bit; so I'm glad you're getting away-good for you!

Michelle said...

My son is on the spectrum, and you're right - it isn't about "fixing" him. He doesn't need to be fixed. What I'm working on with him is smoothing is path. The smoother his path, the easier EVERYthing will be for him, and the happier (I hope) he'll be in life.

And the sitting at the table? Yeah, that's hard. With you homeschooling, it's easier, but the social implications of things that are SO far outside the norms of what is expected get hard because other kids notice and comment and make judgments that so often aren't fair. Choosing where those - not battles, because it isn't about a fight - demarcations of must address by finding a more acceptable coping mechanism versus the ones that we'll shrug off as acceptable quirks is so hard. Because who are we to be the arbiters? But if we aren't and don't... that path can get awfully rocky.

Casey and Tami Parry Family said...

I just discovered your blog today as I have been thinking a lot about adoption lately and trying to do some research and educate myself more about the realities involved. Thank you for your experience, insight and knowledge. You have answered a lot of questions in only the few posts I have read. I look forward to reading more.