Tips for Family and Friends

Hmmm...this is in no particular order, and is coming from the perspective of a mother of children with profound and sometimes tragic challenges:

I don't want to be your hero.

Don't get me wrong, I really do appreciate the vote of confidence.  I'm glad I'm not obviously failing, and I'm glad that maybe my efforts are encouraging others to try to do better.  But, well, to me, complimenting me as some amazing person fighting some unimaginable battle, well...that's a terribly isolating concept.  It puts me into a totally different parenting category in your eyes.  It makes me feel that you see my parenting efforts as totally unrelated to yours.  You seem to think that our families are so different that you can admire me but not relate to me.  True, we have differences in many ways.  But I mess up and lose my temper, I spend days in just pajamas, I think my kid is a monster one minute and then I fall in love with my kiddo's cuteness the next minute...I'm just a mom.  Please don't put me on a pedestal, compliment me, then walk away.

On a similar note, many people say something along the lines of, "God knew you'd be an amazing parent, that's why you got the special kids."  I find that offends many people for many different reasons.  For me, I do believe that God gave me my kids for a reason, and I know that he prepared me for these kids.  But it has nothing to do with me being any better than anyone else.  In fact, usually God gives us challenges because He knows we are WEAK in a certain area and that we need to grow.  I know plenty of parents with kids like mine who do a terrible job, yet God gave them those kids anyway...does that make sense to you?  Well, it makes sense to me when you consider that God gave them and us the same OPPORTUNITY.  We (only with God's help, not just on our own) rose to the challenge and are doing our best.  Others rise to the challenge but in anger reject God's help.  They tend to just stumble along.  And yet others simply get scared off, and neglect or even abuse their children.  And occasionally a child is born to parents who were meant to give a child life but allow adoptive parents to raise their special child (I met one single teen mother in this position, and I applaud her courage to recognize that her child needed to be adopted.  And I met the adoptive parents of her daughter.  What a joy to see their love for their new daughter!).  My point is, well, I do believe in foreordination, but our choices make up a much larger part of the outcome.

"So, what's new with you guys?"  Not much.

Often I feel that I'm stuck in the "baby and toddler phase" of motherhood forever, while your parenting journey is progressing more typically.  It gets repetitive, and friendships based solely on our children's ages tend to fizzle quickly as your kids keep doing cool, new things and we are still working on sitting up.  For the last three years.  So, if I'm not too keen to keep the conversation focused on milestones and achievements, you'll understand.  But if we do hit a tiny milestone, BOY!  That's HUGE!  Like when my son held his first toy (well, a baby spoon) when he was twelve months old.  Many people couldn't understand why that was a big deal- they didn't live through the months and months of therapy and the nights of tears, wondering if it's doing any good.  A few people did know about that but couldn't get past the fact that it's sign of major delays.  Well, I'm just saying- if I'm celebrating, then JOIN ME!!!  Nate got a huge package of baby spoons for his first birthday.  Awesome!

My child is much more than a diagnosis.

Now, Nate doesn't talk, and he doesn't get offended when we talk about his diagnosis in front of him, so I actually encourage questions about that.  Some parents can't take it, but I enjoy the chance to help people learn about Nate and his medical and developmental challenges.  That way others will learn to see people like Nate in a concrete way, not just as some abstract group of people to glance over in a crowd because "it's rude to stare." So I will gladly keep answering all of your questions, if you want to know.  But don't forget to ask the more important ones, like "Will Nate like it if I talk to him?"  "What does Nate like to do?"  "Will you teach me how to play with Nate?"  "Does Nate have a favorite color?"  "How can I include Nate in ________ activity?"

"How can I help?"

I usually get this while I'm trying to get all of my kids unloaded from our van, or in a store.  I appreciate it, and sometimes I have an answer for you.  Other times I'm too hassled or frazzled to give you an answer right then.  If you frequently spend time with our family, you'll probably notice little things you can do to help- taking the hand of one of my older children so they don't run out in the street, learning how to fold or unfold our wheelchair ramp, etc.   If you are still at a loss, ask me at a time when I'm not frazzled- like when we are planning an outing together next week, or when we're hanging out one summer afternoon in the backyard.  I'll need time to think over what would really help.  I'm so used to doing things myself it's hard to delegate.  But, maybe you could learn how to give a g-tube feeding.  Or you can help me brainstorm a way to build a changing table that can hold a child heavier than 30 lbs. If you are ambitious, you could spend time with my autistic son and get to know him so that when I need a babysitter, you will feel confident you could do it. You can give my typical kids a ride home from school so I can be home to meet the handicapped bus on time.  Let's brainstorm together- let's toss some concrete ideas out there of things you realistically could do and I could benefit from.  Be specific about the type of help you want to offer- that will help me come up with real ideas.  "How can I help around the house, maybe for an hour once a week?  How can I help you get time for a date night once a month?  How can I help while you're in the hospital?  How can I help you with errands?  Do you have library books that need to be returned today?"

Don't get burnout.

I might rely on you too much.  If I'm always a downer when you call, that will burn you out.  If I ask you to babysit too often because you're the only one willing to do it, you will get overburdened.  It happens.  If you find yourself limiting your schedule and family life because I (not an immediate family member) need you to help me out all of the time, that's a problem.  Talk with your spouse or another friend- if he thinks you're too burdened with my problems, he might be right.  Set limits that are healthy for you and your family, and talk with me in a positive way.  "Hey, let's end this phone call on a better note.  Did anything funny happen today?"  "I'm going to be pretty busy next month, but let's pick one Saturday afternoon that I can watch your kids before my schedule gets filled up."  Something like that.

Okay, that's all I can think of for now, but I'll add more as I think of it.  Please remember- I am only speaking from MY perspective, and that every family will have different needs and feelings about these subjects.  Don't assume all parents of children with special needs will feel similarly.  The very best thing you can do is- Be there.  Ask.  Listen.  Go from there.