Wednesday, November 19, 2014

Blessing The Special Needs Mom

I was asked to speak at a MOPS group on the topic of "encouraging, supporting, and loving moms of kids with special needs." Of course, I was thrilled to be asked and even more thrilled that they recognized that as a need to begin with. 

I thought I'd post my notes here for anyone who couldn't be there: 

Just like all families, special needs families are a varied group. So many possible diagnoses and then levels of severity within those diagnoses, medical complexities and complications, coping skills for the parents, support systems for the family, etc. It's a tough job to try and speak for all of them. So, I reached out to my Facebook groups and asked other parents what they want you to know, too. 

So why do special needs families need to be encouraged? I wrote this description on my blog recently: 
Families who have a child with special needs are often in crisis. Medical issues can be chronic and exhausting, but often they come on suddenly requiring emergency hospitalizations or testing and sending the household into a tailspin. Even without medical fragility, kids with special needs can have different behavioral issues that leave parents chronically stressed and sometimes with little hope. 
I wrote about the ramping up of behaviors of our little guy in a recent post here and the effects on my psyche and our family. I left out a lot of detail and failed to describe adequately the complete drain on my coping skills, our resources, and the overall toll it took on our family. We are on the right track now and seeking better supports which have infused us with new hope, but I would be a fool to think that we will be crisis-free in the future. 
Parents of kids with special needs are also lacking in restful sleep. Some kids have sleep disorders and require very little sleep (ours does), some need middle of the night meds or feedings, and sometimes the intense worry and anxiety of protecting and caring for our children can keep us awake. 
My point is, often times, we parents are shredded. We are at the end of our proverbial ropes and hanging on by a thread.
What we want you to know:

  • Know that we're just like you - We're not special and we're not supermom. Contrary to the popular adage we hear a lot, God does not give special children to special parents. That's just crap. What we're doing is what all good moms do - caring for our kids and meeting their needs. Don't tell us, "I could never do what you do." Of course you could! And you would, if your child needed you to do it. I think it's supposed to sound encouraging, but when I hear that, it makes me cringe and think of all the things I'm not doing that you probably think I am. No mom thinks she's got it all together, and if you do, just get on Pinterest for five minutes. You'll get over it. We're just like you and we all feel like there's more we should be doing.
  • Get to know our kids. We think our kids are amazing! While life may be tougher than average, we wouldn't trade our children for anything. We are not disappointed in them. When they meet a milestone they've been working on for months, we celebrate like they've scored the winning touchdown in the championship game. If you want to bless us, get to know our kids. Learn some signs if they use ASL or figure out their communication board if that's what they use. If they use a wheelchair, ask us if they can sit in a regular chair and how they transfer. Learn about their feeding needs, etc. In spite of their special needs, they are children first. They each have unique personalities and things that make them laugh and when you get to know them, their disabilities will begin to disappear. 
  • Reach out to us. This life can be isolating and we're lonely. Our kids' needs often limit our involvement. We may not be able to attend the mom's night out because we don't have reliable childcare. The morning Bible study may offer childcare, but not necessarily for our children. Even the group playdate in the park is not a social time for us as our child may need constant supervision due to being behaviorally inappropriate, or unable to physically manage the equipment. Please, continue to invite us even when we say no more than yes. It means a lot to know we're remembered. Forgive us when we get wrapped up in something to do with our child and are not as available or interested in your life as we want to be. We don't want to have a one-sided friendship and we're sorry if we make you feel that way. Don't give up on us when we fall off the radar. 
  • Give us grace when we're not very gracious. Often, the most difficult part of this journey is everyone else. This life is one of constant advocacy. Our children face discrimination from the school system to the insurance companies to looks from other parents to comments on blogs. We have to fight for the rights of our children in almost every arena, sometimes for their very right to exist. Because of this, we often have a chip on our shoulder. Please give us an extra measure of grace. We've learned that the best defense is a good offense and It's hard to shut off "mama bear". We forget that there are safe places and safe people. 
  • Be our support when our child is hospitalized. When our child falls ill and goes to the hospital, our world collapses. Gift cards to local eateries are so helpful to keep us from eating expensive and awful cafeteria food. (Moms aren't provided a tray unless they are breastfeeding.) Bringing healthy snacks when you visit is wonderful, too. Often, we don't feel comfortable leaving our child and having a stash of protein bars and fruit is helpful. And do visit, even when you don't know what to say. Just sitting with us helps break up the monotony and reminds us that there is an outside world. Organizing meals and childcare for the family at home is huge, as well. 
  • Offer babysitting/respite. So many of us don't have anyone reliable to watch our child. Marriages in special needs families are often strained. Allowing us a date night would strengthen the whole family.
  • Offer to take the siblings to fun events/extras. Siblings sometimes miss out on those and we feel guilty about that. While we prefer the whole family be together, sometimes it's just not feasible to take the child with special needs to certain events. It stinks for all of us when that means their siblings miss it, too. 
  • Please don't use the R-word. Ever. When you say, "I'm such a retard!" or "This phone is so retarded!" it cuts deep. We know you didn't mean it "like that", but nothing you can say is going to make it okay with us. It is offensive and hurtful to an entire people group and their families. Please, choose a different word. 
  • Become aware of how your church handles special needs. Advocate if necessary. We love it when someone comes alongside and advocates for us. People with disabilities and their families are among the least churched group in America. I know of many, many families who used to faithfully attend, but have been wounded and made to feel unwelcome because of insensitivity toward (and, in some cases, outright rejection of) their child with special needs. I mentioned earlier that we are often shredded and feel isolated. We need to be there. Please make sure your church is making a place for us. 
I don't have the answer for every family. My biggest piece of advice? Ask your friend how you can bless her. Tell her you don't know much about special needs. Would x,y,z be helpful? I know she'll be touched. She may never take you up on your offer, but she won't forget it, either. 



Sunday, November 2, 2014

Be the One

We did not attend church today as several of our crew are fighting the upper respiratory infection I brought home from work and we decided not to spread it around. 

A few of my friends posted videos of Facebook in commemoration of Orphan Sunday. They were my undoing. My heart filleted and laid bare. Salt rubbed in the wound that is always there, but sometimes below the surface of an apathetic life and my first world concerns. This is the day, one time a year, that the church notices, that we take a closer look and we see them. 

video

The numbers are overwhelming but we need to remember that each of those children has a name, a personality, a uniqueness...a purpose. 

It only takes one to make a difference in the life of an orphan. 

Then I watched this video and I wept. 

video

Did you see that? Did you see how these boys light up when shown just a little bit of kindness? Did you see them melt into the volunteer when she holds them? Did you see the bruises and the sores? Can you imagine what their lives are like when there are no witnesses?

It seems like so little that these volunteers come once a week to ease their suffering. But these children have nothing and for those with nothing, that little is EVERYTHING! 

I weep because I see my Bogdan in them. Their lives were what he faced. Instead, he is learning to speak and the joy of voicing his wants. After careful study of his brother and I, he is learning to relax into my snuggles and to seek them out. He is learning colors, and sorting, and sequencing. His personality is coming out more everyday. 

He has a future.  

And, like most orphans, they don't. But, unlike most orphans in the same situation, they have Friday. And Friday, those volunteers will come back and bring the light and the love and the music with them. And the next Friday, and the next. 

Because those volunteers know the power of one. 

It may seem like too little to sponsor an orphan, or contribute to a children's home, or volunteer with Big Brother's or Sister's, or be a Safe Family.

But it's not. 

Be the one to make a difference for one.