We've recently seen this article about being a special needs parent being posted around different places within our online community of DS advocates.
- Author: Maria Lin
The author's child has 18q, this is different than Down Syndrome, with some similarities. We can honestly say we sympathize with parts of her struggles. She has been in and out of the hospital since her son was 3 months old, Alexi didn't even come home from the hospital until she was 2 months old. We are not in her shoes, or anyone else's. With this being passed around the internet, we just want to make sure people know our views on the situation.
1.
I am tired.- "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." -Lin
We certainly don't feel tending to Alexi's needs is a weight of any sort. Maybe it's because we are new parents, and have never "done" parenting any other way. But we feel fortunate that Alexi has the opportunity to have 3 different therapists helping her in her development. Sure, scheduling is going to become difficult the more frequent they get, but the "pros" certainly outweigh the "cons" to us.
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." -Lin
We are so proud of our little girl that jealousy seems to escape us. We constantly catch ourselves comparing Alexi to other children of her age, but not to say "I wish she was there." We look to other children for unspoken advise on what to look for in Alexi. We certainly appreciate their own hard work and celebrate their accomplishments just as we celebrate Alexi's. (Breaking news: All parents compare their kids to others, it's healthy, as long as it's not viewed as a competition.) She mentions that she even gets jealous of children with DS because society is more accepting of DS. We definitely felt that society wasn't accepting enough of DS so I can relate to her wanting others to become more educated. She is right, DS is far more common than 18q (or any abnormality involving the 18th chromosome.) Alexi has Trisomy 21 (DS,) which is the most common genetic abnormality, this is another reason why we feel some of her feelings have escaped us.
3.
I feel alone. "It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids." -Lin
She goes on to explain that she does not enjoy hearing about
your child's accomplishments or what's going on in
your child's world. Wow, that couldn't be farther from how we feel. We love kids, all kids. There's something about their innocence that is so refreshing. She refers to how raising a special needs child is a role of solitude, we have no desire to keep quiet about our kids. We love to hear about your kids. We are excited about potty training and reading, and even unassisted sitting. Alexi has these same goals. Her's may take her a little longer to achieve, but she'll get there. PLEASE do not hesitate to talk to us about your kids. We love them all, and love hearing about them.
EDIT: March 5 2013:
Since the original article in March 2012, the author has added this 7th item. To keep up with the times, I have added it here, too!
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.
Sure we get scared, too! The treatment/diagnosis stuff is something we've learned lots about in the past year with Alexi's duodenal web and malrotation, that all of her doctors kind of brushed off, saying her symptoms were all "cause by low tone." But these aren't common problems and not every doctor has even seen these types of cases, so we've just learned to not be afraid to "push" for what we think is worth checking into. I don't forget, but I don't look at Alexi as a girl with DS. I do wonder about Alexi's future, but it's not a big fear. Alexi will grow up learning how to use powerwheels, atv's, and operate equipment. I am confident that if the time comes where driving is a question, her answer will be yes. I've got a big yard, and I'm not afraid to use it, if Alexi wants to, we can build her a separate home in the back, independence but footsteps from mom n dad. We'll see about marriage, as her father, she has 30 years before dating is even an option! She is just my daughter, so when we are playing, we are just playing and having fun! There are, however, times that I'll be playing with her, admiring her innocence, and I get blind sided by the thought of what cruelty she will most likely face. This is why we advocate to spread the word to "end the word." Just one way misinformed people can hurt her. But we'll deal with all of that when appropriate, and you better believe I agree with the fear of what may happen to those who harm her. The word "appropriate" seems to go out the window when it comes to protecting those closest to me. We're all scared about finances, I don't think this is isolated to "special needs parents." I'm glad to read the author has lightened her views by meeting more people. Like I said before, she is on a different path than us, 18q is much different than DS and much more rare, I only post our side, so people know how all of these pertain to us. Meeting other families is great. Every time we get the opportunity to meet an older person with DS we are inspired. Sure sometimes they are hard to understand, but if you listen to what they have to say, the world could use more people with their perspective.
5. (old 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." -Lin
Anyone who read my post "
Inconceivable" knows how I feel about this. I agree with her, I am more sensitive to these words now. This is a tough one, as an advocate for my daughter I never want these words used to hurt her. I also don't want to alienate her by people thinking it's petty to get upset over these words being misused. If you say "short bus" you are being rude, no way around it. You are using it in a demeaning way. I hope that the people who commonly use these words or phrases can understand, we don't want you to feel guilty using these words wrong around us, we want you to feel guilty using them wrong all of the time. We want Alexi's hard work to achieve things that come naturally to typical children to pop into your head, not the feeling of "oh no...Kevin's gonna get all offended." I am not offended, nearly as much as I feel a stronger desire to educate people, simply so that Alexi's generation is less likely to use it to hurt her.
6. (old 5.)
I am human. "I still have dreams and aspirations of my own. 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." -Lin
We certainly have no problem talking about Alexi! I guess the fact that we have a blog about her tipped you off right? We do certainly still have our own dreams and aspirations. I talk about Alexi more than anything, but as most people know, I could talk about my work for hours, too. We are growing our family business and working very hard doing so. We also still love to get out and have fun, "Mimi and Pap-Pap" have babysat for us so we could go out with friends, or even go four wheeling in the woods. We always knew we would continue to do the things we loved prior to having a child, once we became parents. Well to us, having a child with special needs hasn't changed that at all.
7 (Old 6.)
I want to talk about my son/It's hard to talk about about son."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." -Lin
Again, we obviously have no problem talking about Alexi. We also don't want you to ask us questions any
different way. Going out of your way to treat us differently is totally against what we're goin' for here. For Alexi to be appreciated as a person, not just a child with DS, we need people to treat her or us "normally." Tiptoeing around us afraid to ask the wrong question promotes ignorance and segregation. Alexi is our kid, ask us anything you would ask anyone else about theirs. If you have a specific question about anything to do with her, we are more than happy to answer, if you just wanna say "how's she doin?" We'll tell ya!
This blog is in no way meant to take away from the author's article, she is in a completely different situation than we are. We just want to make sure that people who may see it, or any other one like it, know how WE personally feel about these situations. Equality isn't about being treated better, it's about being treated the same.
Work Cited:
Lin, Maria. "6 Things You Don't Know About a Special Needs Parent." The Huffington Post, Huff Post Parents
.
