Wednesday, March 28, 2012

as a special needs parent

this is a long one, but its good.
my mom sent me a link to a blog recently that really resonated with me. so i decided to share it so that others could see it. here's the original link:

below i have changed up what the blog is saying to apply more to me, since it is my blog and all.

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. We have at least 7 - 8 therapy visits a month, with each one giving homework and exercises that can be overwhelming and hard to fit into your schedule. 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 family and friends to make my life easier, no matter how small.

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 do at close to 2 (like walk), I feel a pang of jealousy. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I mourn inside for Miles, "It's not fair." Sometimes it's hard for me to be around typical kids.

(i actually don't relate as much to this one because jake is an awesome resource and soundboard with his special ed training. and maybe miles is not old enough for me to be in this place yet.) 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 not what my world looks like. (the writer also describes how she has found support in the special needs community. to be honest jake and i havent joined a support group yet because we dont have the time or need for it. we have a really awesome small group from our church who supports and prays for us and thats enough. maybe later we will feel different. miles is in a baby group with others babies with down syndrome but i feel like the outsider there because im the only one who doesnt speak spanish.)

4. I am scared. I worry that I'm not doing enough. What if I dont make miles do enough exercises and that window of optimal time to learn something has passed? I worry about miles' 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 Miles if anything were to happen to me (even though i KNOW that jake would do an awesome job). my fears have subsided greatly because of my faith in Jesus who is in control of everything and has AWESOME things for Miles.

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 made them myself before miles. 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 and do something fun. I still have dreams and aspirations of my own. Sometimes it's nice to escape and talk about other things.

7. I want to talk about my son/It's hard to talk about my son. My son is one of the most awe-inspiring things to happen in 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. Sometimes, when I'm having a rough day, I might not say much. I don't often share with others the depths of what I go through when it comes to miles. But it doesn't mean that I don't want to learn how to share our life with others.

Raising a special needs child has changed my life. Society values performance and perfection above all else, and unconsciously I sometimes 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.

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. (my sentiments exactly!!)


Just Jarrod said...

Great post.

Betsey said...

Good stuff Lyndy! This is from the heart! I hope I can always be a source of support throughout your journey with raising Miles. You and Jake are doing an awesome job! I have always been impressed with you guys. Your whole world didn't "crumble" after the birth of Miles, but of course that doesn't mean you didn't grieve for your son. As a Mother we just want what is best for our kids and we don't want to see them struggle. Did you know that up to 90% of Down Syndrome babies are aborted? Sickening! Makes my heart so sad. Our society is so focused on perfection and God forbid that our kid would have some sort of disability. Society needs to get a grip. Special needs kids are dear to my heart. I have worked with a lot of special needs families over the years and I have learned soooo much from them. I know my situation in no way compares to yours, but I did go through a period of time when Matthew was younger when I was convinced, as was ECI, that he was on the Autism Spectrum. It was really hard for awhile. It wasn't so much that I couldn't deal with it, but I was so worried about how he would do in school, would he have friends, etc... and yes, I realized how common it was for parents to "brag" about what their kid was doing developmentally. It was very tough to hear. I realized though most parents "exaggerate" when it comes to their kids. It can be such a rat race sometimes. I hope to never be in that race. I decided a long time ago that I would just meet my kids where they are at. If they are at their best even if it isn't what society considers "the best" then I am a happy Mom.

Keep up the good work and remember: one day at a time!


Luu said...

Loved this post Lyndy! I was just thinking about you guys today and glad I checked in! :0 Really appreciated point #7. Thank you for sharing! Maybe we can see you guys next time we are in town...