What you are missing...

Over the last twelve years, I've kept a running record in my head of events and celebrations I will miss out on as a parent of two special needs kids.  If I'm not careful, that record will consume me and overwhelm me.  Recognizing this, I try to focus on the positive and I've kept an equally long list of events and celebrations that I've been able to experience because I'm the parent of two special needs kids.  I know I have mentioned them from time to time on this blog.  Mark and I will always have Santa... We greatly appreciate milestones like new words, first steps, learning to kick a soccer ball, memorizing bus numbers, and other "little things".  I know these milestones make all parents smile, but they make Mark and I do the happy dance!

My boys are involved with Special Olympics and we live in an area that has an average age somewhere in the high 60's.  So there aren't that many kids around - much less those with developmental delays.  And of that subset with delays, very few are involved with Special Olympics.  So up until the last two years, Zach was pretty much the only kid under the age of 18.  (Fortunately, Zach's best friend, Andy and his brother have started participating.)  Anyway, we are used to Zach "competing" against adults and Zach doesn't care, he just likes having fun!

Swimming was the first sport we tried and for the first five years, he was in the flotation division.  At the swim meets, he was competed in a small indoor pool away from the rest of the athletes.  Zach had fun and enjoyed himself, but I always felt like we were missing out on the main action. I didn't really care about the competitions and if we missed them because something better came up, then I was ok with it!  We usually dropped out of the practices by late July anyway.

Well, this year, we took our family trip in early July and while we were away, the coaches decided that Zach was ready for the big leagues... the big pool... with the big kids!  Last year, we were told he was ready, but then he ended up in flotation anyway.  To say I was proud and excited about Zach's advancements was an understatement!

And this is what you're missing: the camaraderie and excitement of the parents, athletes and coaches over little achievements and baby steps is inspiring.  I played sports as a kid, but I've never seen this much excitement over an athlete's accomplishments. And it wasn't just Zach's achievement.  Anytime an athlete swims faster than before or farther than before, the pool erupts into cheers and high fives.  These athletes don't feel jealous.  They don't say, "Man, I never get better."  No! They genuinely want to celebrate their friend.  I don't ever recall those true sentiments when I played sports!  I wish I could feel that way now when  one of my friends shares a record or accomplishment.  I hate to admit it, but part of me is jealous.  If someone runs really fast, or loses weight, or gets a raise, or a new house, I'm not 100% thrilled - I'm definitely in the 90's but it's not 100% like I've witnessed with Special Olympics!  Those athletes are inspiring and I want more of the joy they have!

Pancakes

Last week I was in the midst of a self-induced pity party... this week I'm a little more balanced.  Tuesday was a pancake dinner at my church to raise money for our summer mission trip.  I wasn't really looking forward to helping because I like having low-key, non-busy evenings.  Plus, the thought of keeping track of the two boys was a little overwhelming.  But I went.

I don't think it's any secret that my church is mostly families with grown children and sometimes grown grandchildren.  I live in an area where the average age is somewhere in the late 60's.  I'm 40...  There are "younger" churches in town, but this "older" church is our home.  Sometimes we dream of being in a church with younger families, but God made it clear to me on Tuesday night that we are where we belong.

Ryan had to go to the bathroom and this can be a long process, so I went back and forth between supervising his activities and keeping track of Zach.  While in the bathroom, I had a quick, encouraging conversation with a grandmother aged person.  She didn't offer the normal "platitudes" that don't really help, and I don't remember what she said, I just remember feeling encouraged and connected.

Later, I was in charge of taking the money and Zach was off in the kitchen "helping".  The men who run the pancake breakfasts were cooking for us and they have a system.  They run like a well oiled machine and can serve 400+ pancake breakfasts in two hours time!  I didn't follow their money system and I wasn't very good at estimating how many people were there...  But that's not the story I want to share - but it is funny...

While Zach was "helping", Ryan was holding the door open for people and giving them random prayer cards.  I was so touched at how people took his card and then brought it to me.  The intuitively knew that Ryan was trying to help and they indulged him by taking the card.  (On Sunday mornings, Ryan likes to hand out the bulletins, but he's really shy about it.  He'll hand them a bulletin, but look at the ground, or he'll hand them the whole stack and expect them to take one.  I think it brings smiles to the worshipers - I know it makes me smile.)

At one point, I looked to see where Zach was and he was in the kitchen helping to wash the dishes.  I saw a very efficient man slow himself down and patiently work with Zach to wash dishes.

To say my heart swelled with love for my church is a huge understatement.  I was ministered to in a way that I needed.  I was able to chat with people and collect money while my kids were being taken care of by others.  And I realized at that moment that I'm in the church I need to be in.  I'm surrounded by grandparent aged people (and some younger, non-grandparent aged people - just people who love my kids right along with their own).  People who have the time and perspective to "love on" my children.  (I hate that term, love on, but I didn't know what else to use...)  They understand that kids grow up too fast.  They aren't mired down by the daily demands of parenting little children.  They were God's hands and feet - probably without even knowing it.  They gave me a break, my children had a fabulous time, and hopefully they enjoyed it too.

So I realized, that if I were in a church with other young families, everyone would be too busy with their own kids, that they wouldn't have the time to slow down and mine would be left behind.

I'm so thankful that God sees the big picture and delivers what we need when we need it!!  Thank you church family for ministering to this momma - you have no idea how much I needed that pancake dinner and the attention you gave my kids. Thank you for seeing my kids - and not walking by them - thank you for making them feel valued and important!!

And don't judge me, this part is the hardest to say - thank you for reminding me that my children are indeed valued and important.

I'm tired...

Warning: I'm whiny.  If you don't want to hear my pity party, then click away, I won't mind.

Still here?  I'm having one of those pity party weekends.  I'm sure you are familiar with them.  It's the kind of weekend where you are jealous of everyone else's life.  Where it seems that everyone has a much better situation than you.  Yep, I'm having one of those.  I guess it's because I'm tired.  I try to stay positive and think about my blessings, but right now, I don't want to.  I'm tired.  And I know every parent gets tired, but I just want to cry.

I'm tired of having to listen really hard to what Zach is saying and try to figure out what he wants before I just say, "Yes" to shut him up.  For example, "Tuesday" and "Suitcase" sound alike in Zachese.  But honestly, if I have to unpack the suitcase one more time, I might scream.  Yes, I know it's my fault for talking about trips that are weeks and months away.  But why can't he just hear me when I say, "Not yet!"  I'm tired of having to explain that his birthday is not tomorrow.  I'm tired of meltdowns when I tell him that we aren't going on the church bus today.

I'm tired of washing my 12 year old's bedding because he wets the bed.  And I'm tired of watching my 9 year old like a hawk and putting him on the potty so I don't have to clean a 9 year old's bottom.  Again.  I'm tired of stepping in puddles of pee because said 9 year old holds it all day and doesn't know how to use the potty.  I am tired of spending $15/week on Pull Ups.  I'm tired of being jealous that someone's two year old is potty trained.  I'm tired of my 9 year old shouting "Momma!" at me because that is one of his few words.  I'm tired of hearing about a halloween costume in February.

I'm tired of reminding myself that I'm "oh-so-special-and-blessed-to-be-trusted-by-God" because I "get" to have two special needs kids.  Surely I would have learned my lesson with just one...  I'm tired of that tiny pang I feel when I allow myself to think about what a normal 12 year old would be doing or a normal 9 year old.  I'm tired of those looks by people who feel sorry for me.  I'm tired of remembering that I am blessed and I am lucky.  I'm tired of reminding myself that I'm lucky that my boys still snuggle or I'm lucky that they are innocent or I'm lucky that we still have Santa Claus.  Because right now I'm just tired.

So I'm sorry if I sound like a spoiled brat and a whiner.  But this is my blog.  I know all the platitudes and I know God did not promise unicorns and rainbows.

Soon I will feel a little bit better and I will remember my blessings and I will remember how lucky I am.  But for now, I'm going to sit here, computer in lap and tears streaming down my face.  And in about 15 minutes I'll hopefully turn my attitude around and start claiming God's promises.

Thank you for reading.  Come back next week when I'm not so tired!

My Guys are Lucky...

In my quest to focus on the positive and not be in constant "pity party mode", I've noticed a few reasons why my kids are lucky to have special needs.

Last weekend, we went to a Super Bowl birthday party for one of Zach's school mates.  Zach has two friends with the same name who are his absolute best friends in the entire world.  Anytime he has a chance to reference a friend or talk about a friend, he is talking about one of these guys.  When he sees them, he's absolutely ecstatic and runs to give him a hug. (Sometimes they will even make kissy noises.)  They jump up and down and dance when they see each other.

I love this example of pure friendship!  They enjoy each other and they aren't afraid to show it.  They aren't worried about what "someone will say" - they care about each other.  They hug.  So what if they are "tweeners" and should just high five or smile.  How many other guys their age can openly show their friendship.

My guys are lucky.  If they are excited to see their bestie - they hug.  Conversely, if they are upset, they can cry.  They don't have to have any pretenses.  They are lucky!

Today, we were at a popular playground and it was crawling with kids from a birthday party.  A little girl ran around and said, "It's time for cake! Come on, it's time for cake!"  My guys like cake and they heard someone telling people to come get cake.  So what if they weren't a part of the party...

So of course, off they ran.  Being the great parent that I am, I didn't see them run to the party.  But a few minutes later, I noticed Zach and Ryan enjoying a piece of cake...  I was mortified, but the party mom was gracious enough to let my guys eat cake.  She actually thought it was the part of the day!!  Not too many other kids their age could get away with that...

They are lucky!

Not the End of the World

I keep thinking about blogging more and I've written many posts (in my head)...  But this thought struck me as I was wasting time on Facebook.  Having a special needs child is not the worst thing in this life.  It's not the end of the world.  I will admit, at first, it seems like it might be the end of the world, but you get used to it and you learn things you never would have learned before.

I grieve.  I grieve what I wanted my children to be and do.  I get a little upset when I realize that Zach should be sitting in my class of 7th graders and he is not...  But I have dreamed new dreams for my boys.

A little while ago, I had a conversation with someone and I mentioned that I get upset about things my kids are missing out on.  But I realize that they don't know what they are missing; I'm missing it for them and why am I upset if they aren't?  They don't realize that they aren't going to slumber parties.  They don't realize that they don't have an Instagram, Facebook or Twitter.  They don't realize that they should have piles of homework or have to take some ridiculous civics test to pass 7th grade.  So if they aren't upset, why am I?

My boys have a pretty good life.  They don't have everything they want, but they have everything they need.  They travel, they've been to Disney, they get bored, they get in trouble, they have parents who love them, food on the table, a roof over their heads, and electronics.  They are told "no", they are told "yes", they are loved, they are cherished, they are happy.  In fact, they are down right joyful.  How many tweeners do you know who are full of joy?  I work with them and I can say in all honesty that they aren't all full of joy - some are, but not all.  My kids aren't bullied, my  kids aren't teased, my kids have innocent friendships.  They don't have boy/girl drama, no cyber-bullying, no drugs (well, do seizure and ADHD drugs count?), and they don't have negative peer pressure.  Not a bad deal...

So I will be the first to admit that I did not sign up for parenting special needs children, and I would love to know what it's like to parent a "typical" child.  But this life isn't the end of the world.  At the end of the day, I have children who love me and are loved.  What more could a parent ask for?

Late at night when I couldn't  sleep, I used to blame myself.  Was it the Tylenol I took? Was it the processed food I ate? Was it the cleaning supplies I bought at the big box store? That sounds crazy, right? But what else am I supposed to think when I read the "research".

I can drive myself crazy and eliminate every toxin in my environment, make every meal from scratch, and second guess every product and choice that I make.

Or... I could do the best I can to provide the best options for my kids and treat myself with grace.  I'm not advocating that we clean with carcinogens, but isn't there some balance we need to achieve? Perhaps I'm feeling defensive or want to justify my choices...  But I've endured enough judgmental comments that I bristle easily when this topic comes up.

Anyway...

Kids with special needs have a specific purpose for their lives - just like every other person on this planet.  And I'm reminded that my special needs kids have touched people in ways that typical children might not be able to.  So I'm the lucky that my world didn't end when we discovered that our kids have developmental delays, low tone, seizures, and are intellectually disabled.  Even though I would love to have a diagnosis, my out of the box kids are the beginning of a world only a few are privileged enough to be a part of.