The second is the blog post referred to in the first article and it is written from a father's perspective. Very interesting to hear things from a father's point of view. I can definitely testify that men handle this so internally and so differently. They don't make Mom friends at therapy to vent or sing praises to. They probably don't sit in their car and have a "cry it out" session either. Father's do the heavy lifting and never seem to get that weight taken away, even if just for a second. They are the one's who dry the tears as much as they can and keep you moving forward. I think you will all learn a lot from this father's perspective. I know I did!
Here's the link, but I have copied and pasted below:
http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html
6 Things You Don't Know About A Special Needs Parent
About 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.
My 3-year-old son Jacob is one of them. He has a disorder of the 18th Chromosome. The 18th Chromosome has various named disorders, including Ring 18 and the more well-known Trisomy 18 (which affects Rick Santorum's daughter, Bella). My son has the more rare 18q-. Only 1 in 40,000 Americans have Chromosome 18q-, which means that less than 7,800 Americans are affected by this disorder.
Because of this disorder, Jacob has had serious medical and developmental issues. He has had heart surgery, kidney tract surgery, bronchoscopies and endoscopies, slept with an oxygen tube, and has had dozens of medical tests and sees numerous specialists. We've been in and out of hospitals and doctors' offices since he was three months old. He also has severe developmental delays and receives speech therapy, occupational therapy, physical therapy and behavioral therapy.
Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don't know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling like a goofy bear).
Chances are that you know a special needs parent, or you may be one yourself. As a special needs parent, I often don't share my feelings on this aspect of my life, even with my closest friends, so I decided to compile a list here with the goal of building understanding (I was largely inspired by this beautiful post, authored by another parent to a child with a chromosomal disorder). I don't claim to speak for every special needs parent out there, but from the ones I know, some of these are pretty universal. If I've missed any, please leave a comment below.
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 out Shut 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 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.)
5. 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...
6. I want to talk about my son/It's hard to talk about about 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.
Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I'd come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary "performance" difficult or even impossible.
It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is -- no matter how they stack up against what "should be." Raising a special needs child shatters all the "should bes" that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed. Follow Maria Lin on Twitter: www.twitter.com/marialinnyc
This is the blog post Maria mentions in her article:
http://www.exceptionalfamilytv.com/blogs/families/michelle/five-things-you-should-know-about-special-needs-family
Five Things You Should Know About a Special Needs Family
Our journey as a special needs family has had amazing highs and astonishing lows. Through it all, I've experienced the joys of a family growing stronger together in the face of a true unknown with Katy's chromosome deletion. Even with all of that strength, we are still faced daily with obstacles and emotions that we don't show many - if any - people at all. In the interest of helping others understand what goes on in our lives every day, here are five things you should know about a - or rather about our - special needs family, at least through my eyes.
1. We’re ostracized.Whether you realize it or not, we’re outsiders. We have an all-consuming fear that something will happen to our child because she can’t protect herself the way a “normal” child can. We worry that she can’t say “Stop” or “Don’t” - or that she won’t realize she should have said it until it’s too late. We worry that people simply won’t understand our child. We have seen the sideways glances and rolled eyes from strangers when our child does something they consider rude or disrespectful. We’ve been verbally accosted by strangers who feel we shouldn’t have used a handicap parking spot for our “normal” looking child before I can even pull the wheelchair out of the back. We’ve listened to parents at our children’s school complain about how our child is somehow holding their little boy back. We’ve dealt with the inconsiderate use of the word “retarded” from our children’s own friends to even one of our child’s doctors. And no matter how many well-meaning people try to help, we will still feel alone.We end up by ourselves at parties, whether we have our little girl or not. If she’s with us, than we’re constantly watching her to make sure she’s okay. We don’t make our rounds and say “hi” to everyone. We simply can’t for the reasons I’ve mentioned above. If she’s not with us, then we’re worried that something will happen to her away from us. We don’t go out with our friends the way we used to because it’s too frightening to leave her with someone whom might not understand what she’s trying to say or to sign. Sometimes its even too hard to get your own family to understand just how stressed out you are.
2. We’re jealous.Even with a family like ours where four wonderful kids help out every day, we can’t help but feel a tiny pang of jealousy every time a child younger than our little one simply walks up to us. Or talks to us. Or runs past us on the way to ask someone for money.Know what’s even worse? It makes us feel guilty as hell, because we’re so proud of everything our child has accomplished. This little girl has worked harder than any of our other children to accomplish everything she has been able to do - and we wish it wasn’t so hard. We hate that that little pang of jealousy hits us because this “normal” child in front of me didn’t ask for my little girl to have a chromosome deletion. This child doesn’t realize that when he talks to me, for a split second, I think “Why? Why did this happen to my child and not to you?” And then I have to put that thought as far away as possible because it’s not fair to that child or to my little girl.If/When Katy reads this sometime in the future, I want her to know that we have never regretted a second with her. You made us become better parents and better people. You amaze us every day with every single accomplishment you have piled on top of accomplishment.
3. We’re scared.We try to do everything we can to set our child up for success and we always worry that we’re not doing enough. Or we’re doing too much. Or we’re doing the wrong thing. Or we haven’t done enough research. Or we won’t be able to afford that. Or how will we be able to afford that? On a daily basis, we wonder whether the decisions we’re making today will improve or degrade her quality of life. And we do it knowing full well we’ll never know the answers to those questions until they arrive - for better or worse.We constantly worry about money because everything involved with caring for a special needs child costs way, way more than it should.We worry what will happen to our little girl when we’re gone. So we hire lawyers to draw up special needs trusts so that our child will be financially protected when we’re gone and won’t find herself fighting the same fights we handle now for assistance and benefits. Did I mention that we worry about money?
4. We’re good at hiding things / We’re not good at hiding things.I am a deeply private person and became even more so after my daughter’s issues arose. I’ve rarely expressed my deepest feelings too anyone save my wife. And sometimes I haven’t been able to even do that. I internalize the problems we deal with and swallow them whole, because that’s what a strong father, husband - a strong man - does. What was it that the old deodorant commercial said: “Don’t ever let them see you sweat.” I have never wanted anyone to know just how terrified I have been. I’m not sure I want them to know now.
In this day and age, Facebook has become an unbelievable lifeline and community for my wife. She found an entire village of chromosome 6 and other special needs mothers that understood her pain and frustration. That community understood what was going on when she posted what was on her mind. To others, she just seemed rude. For a private guy like me, it took a lot to start Katy’s blog and start to bring some of the emotion of our lives to the public. It has taken even more for me to start to try to become more active within the same online community that my wife finds such comfort in. This post is, by far, the most I’ve ever revealed about our circumstances. I’m still trying to decide if I’ll even hit the post button.
5. We’re stronger than you realize. / We’re more fragile than you realize. We’ve had to deal with watching our child get stuck 26 times over two hours as doctors attempted to get an IV in her. We’ve given our little girl over to doctors seven times to perform some sort of surgical or medical procedure that involved general anesthesia - more than all our other children combined. We’ve waited in private agony for her to be returned to us each time, hoping for the best, but scared to death that something will go horribly wrong. We’ve had to develop incredibly tough skins dealing with red-tape corporations determined not to spend a dime more than they have to on my daughter, even if they’re legally obligated to do so. We’ve fought for what we thought was right and just even when it put us at odds with family and friends.And we’ve broken down in each others’ arms. We’ve been hurt by seemingly innocuous remarks that wouldn’t have fazed us a day - even 10 minutes before - but for some reason cut through at that very moment. We’ve hurt each other when our actions haven’t lived up to our expectations.We’re human.So, for our friends and family, for future friends we haven’t had the pleasure of meeting yet, for strangers to us who are friends and family to a special needs family somewhere else in this vast (but ever smaller) world of ours: What can you do?Strive to include. Work to understand. Go out of your way on occasion to help a special needs family out. Realize that the stress and the strain take their toll. We’re just trying our best to survive. If we’ve offended you with our words or are actions in one of these times, we apologize for our moments of weakness. Hopefully, someday, we can move forward together.We do our best to make our family life look normal and to act like everything’s fine. And we wish people might see through that facade every once in a while and understand that we appreciate the slightest effort to make us feel… special.
