Just a label? Yea right....

"It is just a label, right?" her glistening eyes asked. I had asked myself the same question hundreds of times. This sweet mom was checking her beautiful daughter in for the first time to children's church. Her glance drifted cautiously between her daughter and my eyes as she explained her daughter's diagnoses.

When my son was in second grade I asked to put learning disability as his primary daignosis and autism as his secondary diagnosis on his education record. They were not supposed to do this but for me (not for Ben) they made an exception. I explained I did not want Ben to be labeled. I did not want people to make assumptions. I wanted Ben to get a fair shake. More than that I did not want Ben to be autistic.

Autism. It made my heart hurt. To this day it makes me a little weak in the knees. BUT I have changed a lot since then.  Autism seemed so big and so scary but living with it for a while I have learned to appreciate the gifts autism has brought me. I have the very best teacher in autism. Autism has helped me to become a more compassionate, more empathetic human being. When I consider the person I was before autism she was actually kind of ugly, not in the outside beauty kind of way but in the inside where beauty really counts kind of way.

More importantly though..... while I have come to understand more about autism one thing I know for sure is AUTISM does NOT equal Ben. No more than anxiety equals me or depression equals you.

Let me tell you about Ben. He is kind and thoughtful. One time in Target I was exhausted from working all day and walked past a worker who accidentally dumped a bunch of movies on the ground I honestly did not even see her. Ben did, he slammed the cart to a hault, reprimanded me for not stopping and smiled as he picked up every last movie for her. He sees things. Things I don't. He is loyal, he knows how hard it is to make a friend so when he has one he will go to the ends of the earth for them. I know very few people who are so loyal. He is funny, not just giggle, giggle funny but hilarious makes me want to wet my pants funny. He is a hard worker because in his life many of what might seem like simple tasks to you and me have required hard work. He knows nothing else. He is quirky and sometimes embarrassingly honest but he has taught me how to let go of the haters (Dear Mean Mom in Arby's, I hope your son, the one you just spanked when he "acted like that" does not grow up to be a harsh, judgmental, opinionated person like his mother. Love, me) and appreciate my blessings, for which I have many.

A label has a place. It may HELP to explain something or draw a hazy picture. It can teach and educate. It can provide services or raise money but it does not ever equate a person.

So sweet little momma I long to hug you and remind you, yes it is just a label, no it does not encompass your beautiful little girl. She is a daughter to the King. She was created in His image with a purpose and a plan. No mistakes and no accidents. She is wonderfully and fearfully made.

Dum-Dums and other tough stuff

A Dum Dum sucker.  Yes that is what my ten year old daughter wanted to be for Halloween.  Of all my kids she has the oddest costume requests. One year she was the mouse (from When You Give a Mouse a Cookie) and can’t forget the year of the guinea pig. (Especially thankful for my neighbor Staci that year!) I want to be clear here I am much more a “Pinterest Fail” mom than an actual “Pinterest” mom. I try. I sincerely do. They say 3 simple steps and make it look so easy, I do not know what my problem is but rarely ever does it even come close. I have to be honest though is has never really bothered me. It just is not me. I have accepted that and been fortunate to have some of the very best friend/Pinterest moms who fill in for me when needed.

Recently though I have begun to wonder about my mom skills. I am not sure if it is having a new job, increasing expectations (from both myself and others), added stress, aging kids (which of course = aging mom) whatever it is, it has gotten me down. So yesterday (Halloween) when Grace casually noticed “My costumes never look the way I picture them.” I was ready to break down in tears. Another let down. Another failure.  Another time I did not deliver. Yes I am probably being over-dramatic but please someone out there admit you have had the same thoughts at least once?

It is hard being a mom. I mean it is beautiful and lovely and wonderful and sometimes it is really, really hard. Why don’t mom books tell you that? Why don’t they start out with “You can read this book but there will come a time when there is nothing in this book or any book  that will give you the answer you are looking for.”  Because being a MOM is sometimes incredibly hard. When you can’t fix things or change the situation. When you can’t will your child into the spot on the team or get them a role in the play. Or more seriously you can’t take away an addiction or make them choose what is right. And yea, yea I know failure can be good. It builds character. They learn compassion, perseverance and hard work. Some rejection is  helpful, even necessary. In your mind you know it is good but they forget to tell you that it literally feels like someone is ripping your heart out. It is not that you want your child to have everything they ever desired or never have to work for something, it is just that you did not know that you were going to feel so much pain.

Wow I could seriously just end the post right here. Because it is how I feel. Being a mom is hard. And often I am not enough. No matter how hard I try. I can’t take away every tear or even design the perfect costume.

 

Last night as I was pitying myself and my terrible day when I heard a silent whisper. “My grace is enough.” What? “My grace is enough.” Honestly you know what I wanted to hear? “You are a great mom. Your kids are lucky to have you. You are the mom of the year.”  But seriously, it is true. We will never be enough. Never. We will never be every single thing our kids need us to be. Why? Because then they would have no need for God. I do my best. I try hard. And sometimes I still disappoint, I still fail. It is in the moment I am grateful “His grace is enough.”

My sweet little Dum-Dum :)

Prologue: Before bed Drew and I were laughing at how bad the Dum-Dum costume turned out. Seriously friends Gracie and I spent hours and hours writing out “Dum-Dums” and drawing really bad apples.  I spent way too much money  on fabric markers, cotton, fabric, etc… (with which I could have bought a pretty spectacular Elsa costume) and she looked like a very messed up little ghost. While I laid there contemplating my newest flop Drew says “You know what she told me while we were trick or treating? How she loves that you always make the best costumes. Lisa she went on and on about how much fun she had creating it with you and planning for next year.” Wait, what? She did? Grace said that? My heart swelled a little.  Maybe just maybe I am not a complete failure.

I am so flawed, so far from perfect. Good thing for me though, His grace is enough.

5 Things Moms/Dads (this mom anyway) of Special Kids Love to Hear

As promised with slight delay.....

5 things that are mostly* safe to say to parent of kids with special needs

 

1) "I can see you love your son/daughter very much."

I cannot begin to tell you many, many things I have done wrong as a parent of a special kid. (well all my kids honestly) In every case though even when it was clearly wrong I did it out of love for my son. You might not agree with decisions that another parent might make but it goes a long way to recognize the love they have for their child.

2) "Everything eventually will be okay."

In nursing school we learned this is false assurance and you should NEVER ever say this. In the special needs world however, it is justified. As a special mom often all I can see is the problem right in front of me I can become hyper-focused. It is good to be reminded that this (whatever this is) will likely pass. As a Christian mom I am reminded that God is in control, God loves my son and everything EVENTUALLY will be okay. Having patience is key.

3) Compliment their special kid. 

You need to understand as special parents we go to meetings (hours and hours of meetings) where we are told all the ways our kids are different, where they don't measure up, their weaknesses, their struggles and how much help they need. I cannot emphasize enough how powerful a compliment is. One time (in a particularly rough season) a friend came up to me and pointed out "Look how Ben is standing there. He is being so patient and waiting so calmly." I was over the moon, it made my whole week simply because someone pointed out how well Ben stood! A positive word travels a long way.

4) "How can I best support you?"

The power in these words. Those who have spoke these words to me were the ones I knew were in it for the long haul. These were not words of judgment and criticism. Instead these are words that communicate "I am with you. The good, the bad I am here." Friends who have asked me this question have become life long family to me. People whose presence is priceless to me.

5) Nothing. This is expressed in two ways

       A) The nothing where you are just present. You are a listening ear. You do not offer suggestions or advice simply a listening ear, a hug and maybe some tissues. Not everything has an answer.
       B) The nothing that completely ignores what just happened. The nothing that communicates "I did not just see that total meltdown" or "I did not hear a thing". There are times when we need to pretend (even for just a bit)  that whatever happened did not happen. This could be followed up with (what would be a perfect number 6) "Why don't we go have a glass of wine."

*Disclaimer- "mostly" if ever you are questioning what you should  say refer to number 5. 

5 Things You Should Never Say

There are some things that should just never be said. Being a mom of a child with special needs I have had many comments made to me most of which were meant to be encouraging, informational or helpful but unintentionally have been hurtful, judgmental and demeaning. So I decided to make a list of the Top 5 Things to Never Say to a Mom (Dad) of a Special Kid.

5) "He/She seems just like ________________" 
(Sheldon from Big Bang Theory, Max from Parenthood, Joe Blow from down the street, you fill in the blank) What you may see as a simple observation or even compliment may not transfer the same. When Ben was first diagnosed a well intended friend compared Ben to another child we both knew. The child was a little older and diagnosed with significant disabilities. While it was true that they had many similar traits (more than I had the courage to admit at the time) all I could do was over-analyze why/how my son resembled (and more importantly did not resemble) the other child. There is really nothing about this kind of statement that is helpful. It is best to let the parent determine when/which qualities mirror those of another.

4) "What is wrong with him/her?"
This should be obvious but you wouldn't believe the number of people who have asked me. It is just wrong. Don't ask it. For any reason. EVER!!!

3) "What is his/her prognosis?"
For oh so many reasons. Mainly though.... this question scares the crap out of us. For most us we are living a day at a time and thinking about the future too deeply will likely cause us to sweat, hyperventilate and break out in hives. The reality? For the most part we do not know the future, (which is terrifying) honestly even the best doctors will not attempt to predict outcomes. We already obsess over the "What ifs" without having to rehash them with everyone we meet. If you need more clarification see What will Ben need to know?

2) Anything that begins with a negative statement. 
More times than I wish I have heard "He talks weird. What's wrong with him?" This is the deadly duo. Two consecutive "nevers" in a row. Say this to the wrong person at the end of her (his) rope and you will likely need to duck. Once a person begins with a negative, my ears shut off and I hear little of what they are trying to say to me.

And drum-roll please.........

1) "You should ______" or "You shouldn't ______"
Please never, ever begin a sentence with these two words. I do not care if you were once a special education teacher, if your grandson has a disability, if you are the gluten free guru or even a parent of a special needs child yourself do not say it. Just don't. These two words carry more shame and guilt than any other two words in the dictionary. No-one, I repeat NO-ONE wants to hear "You should have done blah, blah, blah" Unless you are me (and you are not) please do not direct me on what I SHOULD/SHOULDN'T be doing.

For the most part I have an awesome support system consisting of family, church family, friends, teachers and random strangers. If you develop a relationship with that special mom (or dad) you will likely find out what you need/want to know in time and eventually even offer solicited advice. Just wait until the time is right. Till then watch for the next edition....
What Every Mom (Dad) of a Special Kid Wants to Hear! (or at least this mom anyway)

Silence is…. Quiet

Or golden but that depends on who you ask. The last 10 days my oldest kids have been on a mission trip to Alabama. A few years ago my friend went on a fast while her daughter went on a mission trip as a reminder to pray for her daughter whenever she felt a twinge of hunger. I really like my food and I knew fasting from food would likely only make me crabby and less apt to pray. A spiritual level I have yet to attain I guess. Instead I thought I would turn off my radio. I spend a lot of time in my car and I thought that would be a good time to reflect and hold my kids up in prayer. Did I mention I spend a LOT of time in the car and I also REALLY like my music. 

For an extroverted (ENFP if you are a Myers-Brigg fan) girl like me, quiet is neither desired or enjoyable. I like people, parties, friends, conversation, music, basically noise. I enjoy noise. Having a conversation with me is easy I rarely ever experience that “awkward silence” people speak of. I fill it with thoughts, dreams, words, oh and music. I like music. A LOT. 

The first things were good. I felt very “spiritual”. I talked to God a lot. I prayed for each person on the mission trip team. I prayed for my husband. I prayed for my family, my extended family. I prayed for my patients.  I prayed for the cashier at Arby’s (she seemed to need it #crabby). I prayed for the people in the cars next to me, who looked at me funny. (probably because I appeared to be fully animatedly talking to no one) I prayed for my friends, for my church, for my pastor, for my neighbors, for my dog. Yes my dog. This all pretty much got me through Day 1. And then I started singing. Mostly the only songs I know word for word are hymns. I guess all the years of doing nursing home services paid off. I know every word to those hymns, even the 7^th and 8^th verses. At that point I am sure God was tempted to come to me in a burning bush and beg that I turn back on the radio. (If you have ever heard me sing you would understand. But He had to hang in there because He had more to teach me. Poor God. Some of us take A LOT longer than others) I sang and I sang. Day 3 came and there it was… “The Awkward Silence” I could lose myself in my thoughts for a bit but then the silence would return. AND IT WAS QUIET.  Day 4 a funny thing happened. Me who never wins ANYTHING won a raffle. Guess what I won????? A BASKET FULL OF CD’s. No I am not kidding. Either God was testing me or begging me I can’t tell which. A couple more days of praying, some singing and awkward silence happened. 

So quiet in here

About Day 7 I noticed that I didn’t dread the silence so much. In fact I rather looked forward to the broken prayers and off key “How Great Thou Art.” I also experienced something else. A presence. A quiet presence riding along with me. In the quiet, I began to discuss with God the people I love. Not just a list of wants or asking God to mold the person in a way I see fit but to really stop and listen. I teach and I know that prayer is a two way street but the honest truth I am so stinking bad at listening. I often go without answers to my prayers because I do not stick around long enough to hear them. It breaks my heart and excites me all at once.  What have I missed? What do I have to look forward to? 

Another lesson learned in my experiment/fast? NOT ONE person noticed the radio was never on. Not my husband, not my friends (love you Janet), not my children. NO ONE. So what happened instead? We talked! I listened. I enjoyed my people. 

Honestly, tomorrow I cannot wait to listen to my CD’s. I cannot wait to let Meredith Andrews lead me in praise and worship but…. I will hold to what God has taught me. I will shut up once in a while. I will (try) to listen more.  I will not wait for the next mission trip to be quiet.  A new trend maybe? Like #MCM (Man Crush Monday) or #TBT (Throw Back Thursday) we could have #TOT (Turn off Tuesday) or not…. lol

Thankfully God is not finished with me yet “being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.” Philippians 1:6

Thanks Marge!

On a field trip to the Minneapolis Institute of Art Gracie’s teacher asked the kids what integrity was and they replied in unison “Integrity is what you do when no one is watching.” That got me thinking. Could love have that same definition? I mean it is great to give chocolate, jewelry on a special day (especially chocolate or coffee, coffee is good too) every year to show your love but is it not what you do every other day of the year even when no one is looking that matters? 

It is the people who love, give, do, (unconditionally) even when no one is looking that really inspire me. The people who day in and day out give sacrificially without glory or fanfare just because it is the fabric of who they are.  This in my opinion is the essence of  love. 

I was thinking this morning of the people I have met over the years. Random people who do not even know me but have gone the extra mile to show love and concern. Little angels God has placed when/where I needed them. One story came to mind.

I was working for a hospital and it was looking more and more every day like my position may be going on strike. I knew there was NO way I could ever afford a strike. I was a newly single mom of three kids and not that picketing for better wages/benefits wasn't for me, it was just that food and shelter took priority. As a result I found myself at the Anoka County Workforce Center. I was looking at my options as the pending strike loomed over me. I had no idea what I was doing so I approached the lady behind the counter. I don’t know her name so I am going to call her Marge. She looked like a Marge, a no-nonsense kind of gal. Marge asked me what I was looking for so she could help me get started. I told her about the strike and then I told her of the last few months which had not been pretty. She looked me square in the eye with deep compassion (and a little foolishness because she had no idea the can of worms she was about to open) and she asked “Oh my goodness that is a lot, are you okay?” I realized in that moment I was NOT okay. Not even close.  I opened my mouth but no words came out, my mouth betrayed me. Tears started to run down my cheeks. I tried to speak but all that came out were whimpers and groans. I was bawling. Seriously the ugly, messy, snot flowing kind of sobs. The kind you should only do in the privacy of your own locked bathroom, the kind do not want anyone to ever see. Marge quickly came around the counter she grabbed my arm and pulled me into a smaller room. Honestly she did not say much she just hugged me. (as I dripped drool and boogers all over her shoulder) She held me until I was done and then she showed me the computer and where to begin my search. 

I did not find a job that day nor thankfully did I need to. My job did reach an agreement just in the nick of time and I never saw Marge again. Yet I will never forget her. No one  knew what Marge did for me that day. She cared, she sat, she wiped tears, she hugged. She loved with integrity. She was not too busy to see the needs that stood before her. That my friends is love. True, sacrificial, unconditional love. I aspire to be like Marge. Often I am too busy, too stressed, too self-centered to see what has been placed in front of me. This is my Valentine prayer. Not just to love one day, not to love for the glory or the “credit” but instead to love in the way of action, the kind of love that does not look to be appear fancy and perfect but instead is messy,  full of tears, boogers and hard work, even when no one is looking.

Because that kind of love my friends is a beautiful thing.