6 Things You Don't Know About a Special Needs Parent

I'm so grateful everyday that Natalee's delays aren't more serious.  But as I read through this article, I found that Lin's "list of 6" applies to me.  Everyday, more and more, I'm finding that I can relate - really relate - to the parents of the rest of my preschoolers.  I am one.  It's hard to accept.  Being the parent and the teacher..finding the balance, not listening to the scuttle behind me about what other people think.  But we're doing it.  Natalee's doing it.  Xavier's doing it.  Mike's doing it.  We're finding the balance.  We're working hard.  We're continuing the climb.  But still, how Lin's 6 applies to our lives:

• I am tired.  Every move has to be planned.  Changes result in meltdowns.  What's happening "next" is just as important as what's happening now.  Life skills have to be explicitly taught and retaught.  I have to be patient all.the.time.  When my kid throws a fit in public we know people look at us and think, "spank her" but we can't.  If we spanked her for every tantrum that's all we'd get done.  Mike and I rise at 5:30 and are lucky to be in bed by 10:30.  We rarely give ourselves "time" until the children are in bed.  It's okay, it's rewarding, we're seeing results from the fruit of our labor...but we're still tired.
• I am jealous.  When your 2 year old "gets" it and my 3 1/2 year old doesn't...I get sad, and a little jealous.  When we see her struggle to do things that come naturally to other children we feel jealous for her.  We view jealousy as a sin and we're working hard to turn these feelings into feelings of pride for the accomplishments that Natalee has succeeded at.  
• I feel alone.  Sometimes know one else just really gets it.  It's okay.  It's not your fault.  But please don't judge our feelings, our decisions, or our lifestyle because we're doing the best we can.  
• I wish you'd stop saying "retarded" and "normal."  What is "normal" anyways?  Our view of "normal life" is very different from yours.  And retarded?...well it's just not a nice word!
• I am human. {direct quote} "I have been challenged and pushed beyond my limits in raising my [children.]   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 children irritate me, and sometimes I just want to flee [and do something alone]. I still have dreams and aspirations of my own...
• I want to talk about my children/It's hard to talk about about children.  Sometimes when we've had a rough morning at home or another meltdown I might be quiet.  I'm not unhappy or angry - I just don't want to talk about it.  Likewise, when I share something about my children that seems minute to you, please know it's probably a big deal to us.  When I tell you that, after 8 months of potty-training my 3 year old was finally able to verbalize to me the phrase, "I have to go potty" know that we are seriously rejoicing.  Or when my 1 1/2 year old invites the 3 year old on an imaginary play scheme and she takes the bait - we're seriously excited!  If you want to know how we're doing ask specific questions.  The question, "how's Natalee?" is overwhelming - because she's both good and challenging all at the same time.  But "how's Natalee's physical therapy?" gives me a path that I can respond to.  Xavier is the same...when you say, "how's Xavier?" I feel overwhelmed.  Do I tell you that I often feel so sad for him because I feel like I don't do a good enough job at keeping him out of the shadow?  Do I tell you how hard it is for him to sit through an hour of therapy but that he does an excellent job and the therapists are so kind to him?  But if you ask me how Xabe's doing at Lora Jean's or his vocabulary is coming along then I'll know which avenue to respond to.  My children are my pride and joy, and while our accomplishments might not be the "mainstream" we'll never stop being proud of the people that they are.

{Xavier's invitation this morning - "let's go shopping, Nalee!"  hats, automobiles, bags...and they were off!}

But most of all know that we know that you mean well.  We know you love us.  Care about us.  Support us.  Don't feel criticized when we read a label in front of you.  It's not about us - or you - it's about them.  Don't feel slighted if we have to take Natalee into a separate room for a break or a brushing...it's not about you, or me, it's about her.  Pat me on the shoulder when I am quiet, hug me when I tear up, and rejoice with me when I am joyful.  The journey continues....