Thursday, March 15, 2018

Just Nervous

Sitting in the back seat of my Uber on the way to JFK airport this afternoon…

We are stopped at a red light when a car behind us honks. A car beside us honks twice in response. Another car honks, then another and another. We are surrounded by a frenzy of honking cars but the reason for the honking is not clear to me, nor to my driver, as evidenced by the fact that we are both swiveling our heads around from side to side and front to back, trying to find the cause of the honking. 

We find none. 

I’m instantly annoyed.  

Honking for no reason? Seriously? I imagine sticking my head out the window and yelling at everyone above all the honking to “STOP HONKING!!!!!!!!” 

Instead, I keep all of my body inside the car and make eye contact with my driver through her rear-view mirror, giving her a very exaggerated and knowing, “Geeze, what is wrong with these people, am I right?” kind of look… 

She smiles back at my agitated face, shrugs her right shoulder slightly and says to me calmly, “Most of them are just nervous.”

"Oh..." I reply, surprised and a little humbled that she didn't just jump on my outrage bandwagon. I quickly add, “Yeah, good point...That’s a very wise way of thinking about it.”

The light turns green. My driver proceeds with the route, while I proceed to process the wisdom she just dropped on me – wisdom that was way less about how to navigate the literal “honkers” on the streets of New York City, and much more about how to navigate the metaphorical “honkers” on every single road of life. 

“Most of them are just nervous.”  

For reasons that may not be clear to me, nor do they need to be, the honkers are nervous.
And uncomfortable - because nervous is usually pretty uncomfortable.

So the nervous get noisy, and start honking.  Because for a moment honking makes us feel tough. And feeling tough, even for a moment, can sometimes feel better than admitting we feel nervous.

But what I was reminded of in the back seat of my Uber on my way to JFK, is that the next time I'm surrounded by honking, I have to remember that the honking is about the honkers, it has nothing to do with me. The nervous honkers do not need a honk from me in response to their honking. They sure as heck don’t need TWO.  That won’t solve any problems. It definitely won’t stop the honking.

And the next time it is me who is the one getting noisy and doing the honking, because I am the one who is nervous, and my nervousness has temporarily confused me and caused me to think I need to be tough, I can only hope that instead of receiving honking in response, I’ll be lucky enough to be in the presence of someone who understands honking, like my Uber driver today, who can calmly smile at me over all the noise I'm making and say, “I hear you sweetie. I hear you getting loud. I know it's because something has you nervous and it's okay. We all get nervous sometimes. It’s okay.”

Friday, January 5, 2018

You're Just Saying That

Recently family members convened at my parent's house for a birthday celebration. The birthday we were there to celebrate was that of Frank, boyfriend of my youngest sister Claire.

As is tradition for all birthdays in our family, at some point during dinner we go around the table and everyone says something we love or appreciate about the birthday person.

When my turn came I knew exactly what I wanted to say; "I really appreciate you Frank because I remember noticing very early on when you started spending time around our family that you seemed to make a point of interacting with Julia.  I watched you seek her out on your own and spend time getting to know her - and that really meant a lot to me."

Frank smiled and replied, "I have to be honest, when Claire and I first started talking and she told me about Julia, her niece with special needs who was the 'best thing' that had ever happened to your family, I didn't really believe her. I thought that was just what people who have kids with special needs in their family say - what they are supposed to say about it - but that they don't really feel that way."

The table was silent as we all took in what he had just said.  We felt a little surprised and curious about this perspective we hadn't ever considered.

We DO really mean it, we aren't just saying that...

Frank continued, "But after just a few weeks of spending time around Julia and with your family, it's like Julia opened my eyes to something I had never experienced before and wouldn't have been able to understand without experiencing it. I realized pretty quickly that this isn't something you are just saying because you are supposed to - but you really mean it when you say she is the best thing."

All I could do was smile at Frank, blink in my tears, and soak in his words.

I DO really mean it, I'm not just saying that...

But if I am honest, I probably thought the same thing Frank did prior to having Julia; that saying a child with special needs is the "best thing' is just what people say, it's the right thing to say, it's what people are supposed to say - you put on a good front and make the best of a bad situation, but we all know, you don't really mean it.

And then I had Julia - and she introduced me to a part of the human experience I had not known before, and in doing so she changed me for the better.  What I may not have believed before, she made believable.  Through her I learned that the families who rejoice over having a child with special needs are not putting on a front and are not just saying what they are supposed to say. This child they've been given is not even close to being considered a bad situation to make the best of, this child they've been given is their greatest gift. An unexpected gift, yes, but a potentially the best gift ever - if they are willing to open it.

I hope everyone gets the chance Frank did, to come face to face with a Julia and experience for themselves what families like ours mean when we say our kiddo is the best thing that's ever happened to us.

In the meantime though, you will have to trust me that I'm not just saying it.

Julia and Frank

Friday, October 20, 2017

Drawer by Drawer

Julia is doing this new thing with drawers: she opens them, she puts something inside of them and then she closes them.

It's amazing!

I move with her along the length of our kitchen counter - drawer by drawer - offering her some random piece of clutter from the counter top so she has something to put away for mommy.

And drawer by drawer we go... She opens the drawer, she picks up the item I've offered her, she places it inside the drawer, she pushes the drawer closed, then she slides her body over to the next drawer to do it all again.

We sometimes get through 3-4 drawers before she loses interest.

I wonder to myself as I watch her, what's changed in her brain recently, what new pathway has formed, making this a thing she now does? I have no idea, I'm not that smart.  But something changed, because this was not something she would do before, but now it is.

I think I could watch her do this with a thousand drawers and not lose interest.

A lot goes in to opening a drawer, putting something in and closing it. When you really think about it, it's a pretty complex task: seeing and planning and moving and pulling and picking and placing and pushing and repeating and on and on... A pretty complex task, that Julia now does -  now, at age 10 - not before, because her brain wasn't ready before - but now, because her brain is ready now and so now she does this thing.


And I'm glad no one told me back when she was a tiny baby and I thought I needed to know things - that this is what she would be doing at age 10 and that I would be happy over it. Putting things in drawers?

I wouldn't have understood. My brain was not ready.

A lot goes in to separating from expectations and living in reality. When you really think about it, it's a pretty complex task: recognizing and feeling and honoring and grieving and seeing and loving and releasing and adjusting and embracing and on and on... A pretty complex task, that can't be done all at once because our brains aren't ready for everything all at once, they need time to change and form new pathways and get ready too.

So right now, it just happens to work out that Julia's brain is ready for putting things is drawers (!!!) and my brain is ready to celebrate whatever it is Julia's brain is ready for.  We maybe weren't ready before for now, but we didn't need to be.  And we maybe aren't yet ready now for what is next, but we don't need to be.

We are both perfectly ready for right now - just taking it drawer by drawer.

Monday, September 18, 2017

5 Ways to be a Good Friend to a Mom of a Child with Special Needs

A few months ago, my best friend invited me to speak to her MOPS (Mothers of Pre-Schoolers) group on the topic of "How to be a good friend to a mom of a kiddo with special needs."

I was thrilled at the prospect of getting to share on this topic! 

Over the years I have thought a lot about how grateful I am for all of the things (big and small) my close friends have done to be a good friend to me and hang in there with me through all the hard times. My plan was to speak about my own experiences - but I decided it would be a more valuable conversation if I could offer to my audience the perspectives and experiences of many moms of kids with special needs. So, I put a call out on Facebook to my all of my "special needs moms" friends and asked them, "What have your friends done over the years to be a good friend to you?"

Based on their responses, I've put together my Top 5 List of Things You Can Do to be a Good Friend to a Mom of a Child with Special Needs!  (Drum roll please....)

5. Teach your kids about my kid.

For a lot of us, (and this can of course vary), but for many of us, our friend's kids are the only friend's our kid has.  This is true in our case.  I am SO dependent on my friends kids to be Julia's friend. 
It means so much to me to have close friends who have done a good job of talking to their kids about Julia, teaching them about how to be her friend and making them feel comfortable when they are around Julia.  

This means my friends have had all the tough conversations with their kids again and again in order to help them understand and keep Julia fresh in their minds so that when they see her they are more comfortable with embracing her.  I can hardly put into words how much this means to us - to have little friends who move towards Julia rather than away.   Because out there in the world it can be really tough to be a kid with special needs and find kids who comfortable being your friend.  

We need our friend's kids to be our kid's friends, so if you will put the work in to helping your kids love my kid, then you have been a really good friend to me. 

4. Offer to learn about my kid.

One of the things several moms mentioned in response to my request is that they really appreciate it when friends have asked "How can I learn more about your kid?"   "Is there a book I can read about the diagnosis?"  "Is there a video I can watch that will teach me more about what you are working on or going through?"  

Friends who want to know more about the nitty gritty of what we are going through stand out to us!  
In my own life, I've had friends ask, "Can I watch a video of her seizures so that I know what they look like?"  "Tell me what to do if I see a seizure so I can help her and you."  

Other moms mentioned it has meant a lot to them when friends offer to learn how to take care of their kid so they babysit.  This means a ton to mom's like me because most of us aren't comfortable leaving our kids with hardly anyone because our kids are so complex.
Another example a fellow mom shared was that one of her friends asked her "What can I do to make my visits less anxiety provoking for your daughter, tell me how I can come over and make it easier on her."

One more thought on this particular strategy, I've found it to be especially touching when a friend has shared with me how they have done something differently because of what they have learned from us - for example, my friend told me that she saw another special needs family at the park and in the past she might have just not done anything or thought the best thing to do was to not interact, but because of our relationship and all we had talked about over the years, she knew that she should reach out and just say hi, so she went over and talked to that family!  

Letting us know how our story has impacted your life can really be a boost!  

3. Let us know we are not forgotten.

The overwhelming tone of the feedback I received on this topic is that so many moms of kids with special needs feel forgotten.  Sometimes it can feel like the world is passing us by and we are still here, doing our best, but we feel like no one remembers.  

And I get it, I really do.  Normal child development puts you with other families who are also experiencing normal child development.  For most moms, your social world revolves around the connections your kids make with other kids - this makes sense. But for moms of kids with special needs (and dads and grandmas and grandpas...), you don't have those natural connections, or they are so much harder to find - so that can lead to feeling like the world is moving on without us.

I had a friend ask me one time "How can I be a good friend to you?"  
My answer was, "I'm just afraid we are going to be left behind by everyone."

So all that to say, anything you do to remind a mom of a child with special needs that you remember her, is so valued!  Texts, messages, cards, gifts - any of those things may not seem like much or may seem fairly simple really do matter!  

To a mom of a kid with special needs who is feeling lonely and forgotten by the world, your attention in any form can be huge!  I can't say enough how ongoing reminders of "Hey there, I see you, I remember you!" can mean to a mom like me.

2. Show up and listen (no answers or advice needed).

Please, please, please just show up! Swing by, say hi - that's all we need!

You are off the hook in terms of needing to know what to say or have any answers - we don't know the answers anyway - it's all unchartered territory for the most part.  But if you can just show up, ignore the chaos, ignore any bad behavior coming from our child, and just sit with us and listen: let us vent, let us cry, let us brag, let us whine - you will be giving us such a gift!  If you show up in your sweats and bring chocolate even better!  But mainly just having a friend who can sit and listen, who will validate the tough things we are going through, without giving advice, is invaluable!  

We all need this - right?  Moms of kids with special needs just really, really need it - and most of the time we are dependent on you coming to us in order to get it.  So please, swing by, show up, hang out for a bit - lend us your ear, show us some love - in doing that you are being such a good friend to us!    

1Invite us - please, please invite us!

The overwhelmingly NUMBER ONE thing you can do to be a good friend to a mom of a child with special needs is to INVITE HER to things.  Invite her, invite her family - just invite!!!!   

She probably won't come.
Her family probably won't come. 
Don't be offended - just keep inviting them!!!!  The invitation matters!

There is nothing more meaningful to moms like me and families like ours than getting that invitation. It goes with some of the other things already mentioned on this list - like reminding us we aren't forgotten and helping your kids be friends with our kid - that invitation means SO, SO much!   And over the years the invitations tend to stop. Friends assume you can't come or your child wouldn't be able to attend (which could be very true), so they just stop asking. And this then fuels that cycle of loneliness.

So, if you really want to be a good friend to a mom of a child with special needs, just keep inviting her to do stuff - and don't worry if she can't come, leaves early, or cancels last minute because her kid is having a tough day - that is just what happens - but know that you have done the meaningful part by extending her that invitation!!!! 

Thank you to everyone who took the time to read this list and consider this topic! This has been a great reminder to me that I can always do a little more to care for my fellow moms. And you may not even currently know a mom of a child with special needs, but I guarantee you know a lonely mom - and any efforts you make to show her love will matter to her!  

We cannot go wrong trying to care for each other.

Below are the unedited (except for names) responses I received. The words of my fellow special needs moms speak volumes:

I think this comes with both what not to do and what a person can do... I hate when friends ask 'well, can't you just____' when they don't understand why it's hard for us to take S. out of the house, that there's nowhere to change her, etc... they'll say 'well, can't you just change her on the floor' or 'can't you just carry her up the steps to get into somewhere... like if it were that easy, we hadn't thought of that already (we just do this every day of our lives). What a friend can do is: being incredibly understanding when a special needs mom has to cancel plans, isn't available much, be happy/content to just visit with coffee in sweats if that's all their friend has the energy for (because chances are they've been sleeping every night for years whereas I for example haven't slept more than a couple to few hours at a time for EIGHT YEARS). It's also nice when friends/family send cards to S. or me,  just letting us know that they haven't forgotten about us is nice because many of our friends have unfortunately and we never hear from them anymore.

Don't exclude us... we may arrive late to something, or have to cancel last minute, but that doesn't mean we don't appreciate being invited to things...
This is my big one. My friends continue to go out and do things. When I see a picture or hear about it they are like well we didn't think you could go. Key word "think". Why not ask me and let me say no I can't but thanks for the invite. Thanks for including me, thinking of me or remembering I'm here.

Invite us - even if you don't think we can come. Also, don't tiptoe, just ask the questions!

Just listening, but not proclaiming they "understand." I've had a friend compare having a child that's a toddler to what I go through. But a friend that just listens and is there to offer a hug and encouragement (preferably brings Diet Coke and chocolate) is worth its weight in gold!

I miss the simple things, like a phone call to see how I'm doing, I miss coffee dates, I miss a friend that says can I pick you up anything from the store, I miss hugs when you get bad news, I miss human interaction, I miss being included, I miss being thought about... I'm not sure friends really exist for people like us anymore. I'm starting to lose my faith.

Don't sweat the behavior issues that come with our challenges. Tell your own kids, and set the example of not showing shock and discomfort... please. These infractions are small potatoes for a kid (and mom) who needs to be loved by you. We have to pick our battles. Chances are I correct him for it constantly and just need a break to ignore it for time to visit with another adult!

If I'm whining, just let me whine about the latest thing this week. But don't give me the whole pity party, just pretend you know what I'm talking about. I'll get it out and then we can get on to more normal conversation. I've always had a ton of respect for those I have found along the way that don't know an ounce about what's going on but are willing to let my whine and moan without pity in their voice or the wow shock factor in what is going on. For us it's normal.

Offer to learn what you need to do so that you can watch the special needs kiddo even for an hour occasionally. It shows that you care about both the mom and the kiddo. 

I had a friend ask if there were any books she could read to her son to help explain why my son needs a wheelchair, that was nice.
-just check in on us once in a while, even if it's just a text. And sometimes it doesn't have to be all about the kids either. Because we can't go out as easily means we do get forgotten sometimes.
-from the other side, I often have to remind myself to do some of these things in return. It can be so easy to get stuck in my own bubble...I need to do better at that!
I second this one...I had a friend check out some books at the library just so she could learn more about what our lives are like.....that was so special to me and has given us new topics to talk about when we do have time to visit.

Bring wine and Kleenex and an open ear. Not to give advice, but to give an ear

I say bring some coffee (and cookies or other treat) and just come spend time with us. We need regular adult conversation.

Just come by and sit. Don't worry that the house is turned upside down or worry we are busy. Just come. Just text to say you care. Two seconds of your time goes a long way for emotional support to me.

Sometimes I just need someone to listen and agree with me that it sucks that my son has kidney disease and it just doesn't seem fair. Every now and then you need that vs. "everything is going to be OK" or "he will be fine."
I also appreciate when people ask me/are interested in knowing about T.’s health issue. Don't be afraid to ask shows that you care and are interested!!!!

Give the parent of the special needs child lots of grace.

I just want to feel like a "normal" mom...I want to commiserate...share successes and challenges...even if they are different

A couple of things that have really helped me....sending me a text message when they saw something that made them think about me...text me an encouraging quote or personalized S. can do all things through Christ who strengthens her.....offering to stay up late so I can call them after my son is in bed...the best time for me but too late to call on the spur of the moment cuz it's after 10 pm, giving me a paper flower arrangement...brings color and beauty into my life...but I don't have to take care if it.....dropping off a frozen dinner or dump dinner kit....that I can make on one if those nights when the day hasn't gone as planned....and being invited - and understanding that I may not be able to respond on that first invite...but that's really just my life that's keeping me being able to...your understanding and still pursuing me is sometimes my only life line. Oh and if I ask you for help with something that you can't do please say no...and then offer to find some one for me who can...take the search for help off my hands...that is a huge help.

I really believe that the most powerful way to be supportive is to just acknowledge that what they face is hard. No platitudes. Be a listening, non-advice giving (unless actually asked for) ear. Notice if a mom is silent when around "typical" mom conversations. There are so many times I have nothing to contribute because 1. my experience is so different than typical or 2. I will be a major debbie downer. Also- I had a friend who just dropped off a wine bottle labeled "for emergencies." It's little things like that- meals during particularly hard times. funny memes. quick messages of "I am thinking of you" etc. etc. Just showing up. And not judging. We are all doing the best we can.

Knock on my door and bring me a cup of coffee. Offer to do things at my house (like bring the party to me). I often feel guilty to leave L. but wouldn't mind just having a grown up conversation. I have an amazing friend that drops by with a ballon for L. and a bottle of wine for me. She gets that I am not always in the mood to hang out or can't because I am busy with L. but is cool with just checking in for 20 minutes with me.

 I have a friend that has sent our family gift cards to different restaurants every month for over 2 years (since G.’s cancer diagnosis) to help ease some of the burden at home. This has been the BIGGEST blessing when facing doctor appointments, school pickups, sick days or just exhaustion.

Let my kid spend some time with yours 
Ask how to deal with my son should a situation arise.

1. Invite my kids to typical kids party and include them in the activities.
2. My daughter with autism sits with a young couple at church. She loves it and it's also a huge break for us.
3. A friend would pick up my kiddo at school and hang out with her for an hour or two every few weeks.
4. A couple of friends have given my daughter piano lessons. She loves it and feels so proud of herself.
5. Acknowledge that my kids are different but love them for who they are.
6. Cry with me on the hard days and celebrate with me the small victories.
7. Advocate for others with disabilities, let my children inspire them to make a difference.
8.Pray for my kids with disabilities their typical siblings and my husband and myself. Special needs are challenging to the whole family.

1) Always inviting us to events/activities AND never taking it personally when we decline because the invitation/event doesn't work for our family. Let us make the decision about what we can or cannot do.
2) Treating our child just like any other child.
3) Accepting our entire family without our daughter's disability being a THING. We're different, our friends know that, accept us anyway and don't make a big deal about our differences.
4) Listen with love.
5) Don't judge.
6) Focus on the positive, what our child can do, learning to do, etc.

The #1 thing that my friends have done for me is include my daughter in activities with their kids. It absolutely makes her happy. Most of the time other kids will not play with her because she's different and does not talk. It breaks my heart. My friends kids will take her by the hand and help her.

Teach your kids that compassion is cool. Helping others is cool. Sit with our kids at lunch because someday they may just be their boss or co worker.

Being eager to learn all they can about my child's disability so they can understand how best to support her and us.