Thursday, August 8, 2013

Just a glimpse

It's something you can't understand unless you're there.  The life of a special needs mom.  Being a mom (or dad) is hard as it is.  Being one to a child who has special needs is something entirely different.  Sure, we take it in stride, often making it look easy.  Don't let that fool you... it's never really easy.  There are things we don't tell you.  Things we don't complain about for fear of looking weak, showing fear, or being selfish.  

Most parents take their children to the doctor for their routine checkups.  Immunizations... well visits... anytime they get sick... maybe a total of about 12 times a year.  Our kiddos go about 12 times a month. Therapy... specialists... more specialists because the first didn't have an answer... more therapy... with the immunizations and well visits thrown in there.  Not to mention being in constant fear that you're doing SOMETHING wrong.  Side effects and symptoms ALWAYS hovering in the back of your mind so that anything out of the normal sends you spiraling into a mixture of sheer panic and trying to stay calm and convince yourself that everything is fine.  There is a constant fear that the doctors and nurses have labeled you as "the crazy lady" because your only way of telling them what's wrong is "something just isn't right".  And the satisfaction of hearing, well, you were right... followed by the punch in the gut of realizing that means more doctors and needles and scars.  
Therapy four times a week with four different people.  All giving you "homework" to do.  The fear that if you can't get to all of the homework, the next week when you return, they will think you a horrible parent.  Spending 20 minutes working on sitting... and 20 minutes working on crawling, and 15 minutes designated play time where you have to do these certain things... it's hard to squeeze that into an already crazy schedule.  

The worst is when you stop getting invited to anything because it is just assumed you won't be able to or don't want to go.  When you invite us to go do things with you... it isn't that we don't want to go.  We have to prepare.  How long are we going to be there?  Are they going to have balloons?  Dryden can't be around latex.  Will they have somewhere for us to sit?  How many other kids will be there, Dryden is very sensitive to sound.  Will people be staring at his scars?  Will we have to answer a million questions?  Do we have to hear the constant "what's wrong with him?" that comes with every new encounter?   

YES, we want a "girls night out"... but wait... can I find a sitter?  One that I can trust to do everything Dryden needs.   Make sure he wears his brace.  Don't let him just sit in front of the TV.  Oh, wait, watch that leg!  Make sure you don't feed him this.  He can't feel his legs so make sure you are aware of them for him!!  So while you have your girls night... although we are the ones who NEED IT THE MOST, it is rare that we will actually get to go.  

When you invite us for a play date... Dryden will rarely get to actually play.  He is just getting to where he can sit up, but is still pretty wobbly.  The other kids his age are crawling and walking and climbing... very rarely sitting still.    He will be sitting alone watching the kids pass him up.  And while right now, he doesn't care in the least... as a mom watching, it hurts deeper than you could imagine.  But we hold it all in... until we get home and have a breakdown.   

I remember when Tina was little... when she was ready to sit, she sat.  
When she was ready to crawl, she crawled.   
When she was ready to walk... she just did it.  
To a child without any disabilities, things just happen.  You don't have to DO anything except watch and be proud.  Imagine if that wasn't the case.  Imagine that instead of only worrying about feeding, napping and bathing you had to teach your child how to do everything.  While it may seem a minuscule task... it is not.  It is at times very overwhelming.  

While you watch your kid sit up for the first time, we have to teach Dryden how go from laying down to sitting up... over and over and over and over.  

While your little one is crawling around, we are watching as Dryden struggles SO hard to get that toy that's just out of his reach.  

While you watch your child stand for the first time, we have to get Dryden to realize that he even has feet... that something he can't even feel is somehow attached to his body and can be used to stand up.

While you are getting frustrated because your child is running away from you, we are quietly sobbing inside wishing that just for one second, it was our child.  

I'm writing this, not because I want pity, but because you should know.  If you know a special needs mom, just tell them they are doing a great job. Be prepared for it to be shrugged off as if what we do isn't THAT bad... but don't let it fool you!  Give a hug.  Sometimes, we REALLY need it.  And if we break down crying... it's nothing you did... we are just overwhelmed, over-stressed, and -just for a second- can't be supermom.  

I found this online recently too and wanted to share it with you. It is from a blog about Special Needs Parents.  Please read through them... I found myself in awe that someone had the EXACT same feelings as me.  

1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.
2. I am jealous. It's a hard one for me to come out and say, but it's true. When I see a 1-year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...
3. I feel alone. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it's so not what my world looks like (check outShut Up About Your Perfect Kid). It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob's unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.
4. I am scared. I worry that I'm not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about Jacob's future, whether he will ever drive a car, or get married, or live independently. I am scared thinking of the hurts he will experience being "different" in what's often a harsh world (not to mention that I fear for the physical safety of the person who inflicts any hurt upon my son). I am scared about finances. Finally, I fear what will happen to Jacob if anything were to happen to me. In spite of this, my fears have subsided greatly over the years because of my faith, and because of exposure to other kids, teenagers, and adults affected with Jacob's disorder. When I met some of these amazing people at a conference last year, the sadness and despair that I was projecting onto Jacob's future life (because it was so unknown) melted away when I saw the love and thriving that was a reality in their lives. The fear of emotional pain (for both me and Jacob) is probably the one that remains the most.
5. I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... " I know people usually don't mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It's disrespectful and hurtful to those who love and raise the kids you're mocking (not to mention the kids themselves). As for the last comment, "as long as it's healthy," I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)
6. I am human. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which leads me to the final point...
7. I want to talk about my son/It's hard to talk about my son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn't mean that I don't want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than a more generalized "How's Jacob?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to.