Do You Understand Baby?

A mother's story, in the raw of raising a son on the autism spectrum.

Derivatives and Anecdotes  May 26, 2016

Filed under: Uncategorized — Admin @ 10:08 pm

I feel that I am in this constant dance – (like the Cha-Cha) of balancing Carter’s medication and making sure he eats. Unfortunately all of the medication he has been prescribed really reduces his appetite. If I reduce his dosage, the school calls as his behavior is close to unmanageable. If I give him his medicine, Carter barely eats, is tired and gets the dark circles under his little sky blue eyes after about a week or so. 
The school called today saying that Carter had the ‘wilds’ and they just couldn’t tame him. The light turned on and I realized that for the first time this entire school year, I forgot to I give him his medicine!
I raced to the school to give him his dose and he just cracked me up. I apologized to Carter for forgetting his medication and he said (extremely loudly) “I LOVE NOT TAKING MY MEDICINE. I LOVE TO EAT. GIMME FOOD. CHEEZ-ITS. CHEEZ-ITS. CHEEZ-ITS.” Carter carried on by telling me about his Kung fu skills. Apparently he was karate chopping flies in the sensory room. This was followed by a monologue that actually began yesterday about how he was going to create a pill to make him hungry. Apparently vegetable oil is a good derivative for this type of thing. This kid does his research! According to Carter, if one is to create a pill for hunger, it is essential to create an anecdote in case they get too hungry. He had looming concerns he may eat the couch should his first trial go wrong.
Instead of feeling that I had to rush back to work, instead of getting angry, not getting more tired than I already am, this launched a funny conversation with Siri about the preferred derivative for making medicine and how frequently anecdotes are actually used. Long enough for the magic pill taken 20 minutes earlier to make my precocious and adorable son come back to earth.  
I love this guy! 

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Meet Me Right Where I am At April 23, 2016

Filed under: Uncategorized — Admin @ 3:23 pm

I decided to take my kids on a mini vacation and we are having so much fun! We have never been to Arizona and the weather is just about perfect this time of year so I thought….why not?

Both Carter & Kendall are out cold right now. Between our delayed flight, missed connection and swimming from 7:30 pm – 10:00 pm last night they are pretty tuckered out!!! I just peeked at Kendall and I don’t think she has changed positions at all since she fell asleep. The crisp white bedding is still tucked in tight making her look like a little burrito with a poof of brown hair popping out the top!
I have to say that the little amount of time we have spent in Arizona so far, I really love it. It’s a bit mysterious in all its beauty. We are staying in Phoenix out of sheer convenience as we only have a long weekend and I have heard great things about the Hilton we are staying at. Today we are going to experience the water park onsite. It has a lazy river, water slides and apparently great bartender service. Haha!
Last night was quite blissful. As soon as we got to our room we changed into our swim clothes and headed down to the pool closest to our room. The air was 90 degrees and it felt like although I was in my bikini, I was wrapped in a light and warm blanket. My kids played together so well and as other kids came in and out of the pool last night, they all played well together too. If you have ever taken a vacation as a child with a sibling you know that for that moment in time there is a white flag – a retreat in any prior disagreement. You are suddenly unequivocally on the same team and all is harmonious. LOL. I reveled in that moment and giggled as they played so well together.
At one point last night a large group of people arrived and were seated across from where I was seated. There were two boys in the group who I presume had Cerebral Palsy. I say this because one was in a wheelchair/stroller device and the other was using this fancy blue walker that he could sit on and be pushed or he could use it to help him walk. I would guess that the boys were between the ages of 14 & 17. What happened next was troubling to me. I’ll say ‘mildly’ troubling but troubling at that. A woman in the group who appeared to be the grandma treated both of these boys as if they were toddlers. She went to the young man standing with his blue walker and embraced him. At first I thought it was sweet but the embrace went on super long. Like 3 minutes long. She held him to her like he was a two year old. I could see from across the pool that it was entirely too long for the boy. At first his right hand was gently placed on her side and eventually it landed back on his walker. I could feel his energy and he was saying “Dude, Grandma you are creeping me out.” In the meantime a man, presumably Dad moved the other boy from his device to the comfy lounge chairs where he laid him down. This guy was so happy! I could see his smile across the way even though we were down to moonlight and some other lighting for ambiance. Eventually Grandma worked her way to him. She sat on his lounge chair and rubbed his leg. I could feel how much she loved these boys. Then she laid next to him embracing him. It wasn’t creepy but just troubling. I have not doubt that he was like “Aww…..I love Gramms” and then after 30 seconds was saying “Gramms, it’s hot, I’m not a baby, nap somewhere else”.  
There is not doubt how deeply this woman loved these boys but I believe that she is failing to see that although they were not very verbal or independently mobile, they are young adults. As I live in the community where disabilities of any kind are embraced I have noticed a lot of interesting things. I cannot tell you how frequently people make this mistake. They make the assumption that because that individual does not present like a neurotypical human being; that they are infantile in their thinking. I have seen it with autism, cerebral palsy and other situations. 
One time I was at a barbecue and some friends showed up with a boy in a wheelchair with CP. They were taking care of him for the day. This boy was 17 and I remember feeling like everyone at the barbecue avoided sitting by him. The friends who were taking care of him baby talked him and it was absolutely killing me. Eventually it was just he and I and I asked him if he had ever heard of Josh Blue. He lit up, reared his chin out and said “Yyyyyyyyeeeeesssss!” For those of you who don’t know, Josh Blue is a phenomenal soccer player and funniest comedian ever who has CP. I pulled up a YouTube video of Josh Blue and he and I watched it and died laughing the whole time.  After the video I asked him if he felt like my friend baby talked him. He said ‘yes’. I asked him if he wanted me to talk to them about it. He didn’t answer. I never did talk to my friends about it but I hope that they witnessed him light up when we had dialogue and when I met him on the young adult level he was on.  
The opposite happens with Carter. He appears like a typical 10 year old boy. It’s amazing to me how many people say “He doesn’t look autistic”. I don’t get angry with them because I thought the same thing when Carter was first diagnosed. Why is it that we have been groomed in our thinking that there is either normal looking people or disabled looking people? With Carter, it can be a struggle because we don’t get the grace that other families get if their child physically presents as a disabled person. There is an expectation that Carter answers questions, that he not clear his throat every 30 seconds, that he not go on incessantly about a topic that is of incredible interest to him. Now, I work with him on all of these things but not out of trying to make him ‘normal’. I do it to help him build connections with his friends and community. At some level we all want to be accepted as we are and to connect with others.
I suppose my message here is that no matter who the person is, disabled or not – never assume that they are a child in their mind because they can’t speak for themselves. If there is a child acting out, please don’t assume they are poorly parented. Perhaps they are poorly parented but chances are they are having trouble processing their surroundings. The lights are too bright, the movement of people is too fast, their clothes feel like they have little cactuses in them, they smell something offensive that you can’t smell.  
We all need to meet people right where they are at and with zero judgment.  
So to that Grandma last night ….I am sorry I have judged you. It is clear to me how much you love these young men and they are doing a beautiful of meeting you right where you are at.  

 

A New Chapter November 4, 2015

Filed under: Uncategorized — Admin @ 3:41 am

I am sitting here in an airport with extra time on my hands.   In this solace, I feel inspired to write again.  I apologize to my faithful readers…these last 15 months have been quite eventful.   If I am honest, I have blocked my heart from pouring out my emotions in copy as there is an undercurrent of fear that once I open up the levee of emotions, it will be hard to make it stop.
Let me catch you up.    In the last year or so I moved to a new city, started working for a new company, divorced Jack and began building my life as a single mom.
I won’t get into details of my divorce but I’ll tell you that Jack and I are amicable.   We both share a passion for raising our two little people with love and acceptance. That tie will always bind us, no matter what the future holds 
Let me tell you about Carter during the transition.   I have elevated him to be the “man of the house”.   Not because I need it but because it’s time he understands – I mean really knows he has a role in our family of three.   For so long I fretted about school placements, calls from the principal’s office, medication management, bullying etc.   In the white noise of all of that he has grown up to the tender and ever evolving age of 9.   He is a little man in the making.   Yes, he is not neuro-typical but it doesn’t mean I can’t help him stretch his wings of young adulthood.   
It has been fun and quite amazing to turn him loose.  He wants to fix anything that requires batteries.  The moment a smoke detector starts to annoyingly beep letting us know the battery is dying, Carter pulls the ladder out of the coat closet.   You should have seen him hammer the nails back into the wood of our fence.   They worked their way out from the rain and sun in the past year.  He was so proud to hammer in each and every one.  I am still trying to anoint him as the official “bug smasher” but his heart won’t allow it.  ūüôā
I’ll tell you what I find most astonishing about this little man, it’s his wisdom in the most opportune times.   I forget just how in tune Carter is with all the happenings around him.   He hears everything.   He takes everything in.   In his silence, I mistakenly forget that he has his finger on the pulse of our existence better than just about anyone I have ever met.  Sure, dressing himself can prove to be as difficult as it would be for me to build the Taj Mahal.   However, he is quite the philosopher.   
For example, about a year ago I was feeling overwhelmed.  Needing to clear my head, the three of us headed to the park on our bikes.   As we sat there and watched the sun set, Carter decided to get up.  I wished in that moment he would be present (in the way that I recognize as present), yet he decided to wander.  He came back with a caterpillar.   Carter locked into my gaze, with his arm outreached and a caterpillar on his hand he said “It’s hard not to be happy with caterpillars all over your face”. I giggled, pulled him to me and fought back giant tears.  He knew I was overwhelmed and a bit sad.   That was how he knew to make me smile.  
Just two weekends ago Carter’s wisdom surfaced again and in a profound way.   As I venture into the dating world again, I find it very challenging to really make myself available to any potential partner.   Really, my plate is about as full as it can get without a love interest.   Each day is a balancing act to make sure I don’t drop a ball.  I was talking with my best friend on the phone about how scary it is to make myself available, let go and allow love to enter my life.   An hour later Cater and I were contemplating which Pirates of the Caribbean movie is the best.   When our debate ended we smiled at each other over our bowls of Captain Crumch.    What Carter said after was epic and life changing for me.   He said “You have to be lost to find the things that have never been found”.  Wow.    Just think about that for a moment.  Profound. I am certain he was processing the conversation I had with my best friend moments earlier.   How can a 9 year old manifest such wisdom?!?!

Holy cow, God is so good to me and has given Carter extra doses of knowledge and humor.   Thank you God for blessing our family wth him!!!!!!!!  This child who is defined as autistic by doctors, disabled by society, developmentally delayed by the shool district has proven to be the wisest little man I know!
Thanks for reading and your support.  ūüôā
XOXO

 

Yellow Stripe Belt February 21, 2015

Filed under: Uncategorized — Admin @ 4:37 pm

Yesterday was a fun, exhilarating and emotional day for me.  Have you had those moments where an emotion sneaks out of some secretly quiet and hidden place in your body and once it’s unleashed you simply cannot stuff it back in?  Sometimes it is anger or sometimes it is laughter over something so silly but you just can’t stop laughing until you cry.   For me yesterday it was tears.  Rivers and rivers of tears followed by hardly legible words.  Not only did this happen,  it happenned in a public place.  Lol

You see, Carter and Kendall started Taekwondo last year.   While rewarding, this experience has been somewhat challenging.  Although Kendall is 3 years Carter’s junior, she has surpassed him and earned her yellow stripe belt (2nd belt) before Carter did.  I could have had her wait to test until Carter was ready but I believe strongly that this would have been an injustice for both she and Carter.  It is essential that Kendall has her own journey and that the only thing holding her back would be her.  I am also of the belief the Carter’s journey may be more challenging at times but that it will be his own unique one with celebrations he truly earned on his own.

Taekwondo had a couple of false starts for Carter.   It became clear early on that the class setting put Carter on sensory overload.  The movements of wobbly kids yelling HI – YA,  having to wait his turn, the lights, everything pushed him into a meltdown presenting itself as a badly behaved child.  If this was 5 years ago I would have taken him out of class with consequence.  Thank goodness I now see the triggers for Carter and what subsequent behaviors will follow. 

Carter’s instructor (Master?  Sensai?  I dunno what to call him but I should) could have given up and said that the class is just not going to work for him.  Instead, his instructor tapped into his research gene to find a solution.  One day, he pulled me into his office showing me a video of a young adult with autism and his journey through Taekwondo.   The video was fascinating in the fact that part of it was footage from when this young man started Taekwondo.   Like Carter, he had a wobbly, not so muscular, body that was sensory seeking – not strong and in control.  He would fall to the ground, make the high pitched noises while running around the room crashing into walls.  As the video progressed it showed this young man’s growth and how Taekwondo helped him gain a deeper sense of himself and the exercise of self control.   What I found equally as captivating was the tears welling up in Carter’s instructors eyes.  This man hardly knew my son but was so deeply rooted in finding a solution for Carter.  In a moment where I was grasping for something – anything to find the energy to push Carter through yet another thing that might not work for him, someone had taken the reigns.  I was humbled and grateful.  It was such an intangible gift that was given in a secret moment of just wanting to give up on the thought of pushing Carter through yet another activity.  The instructor had a plan, which included one on one lessons.  He had such belief this would work that I held onto his hope…not mine.  Making room in my budget for this, we proceeded with the one on one lessons.

Some classes were tough for Carter and without a doubt, tough for his instructor.  Some moments I wondered if it just wasn’t going to work.  But slowly I could see that Carter’s push ups were growing stronger and more solid.  The periods in which he exercised self control were getting longer.  He began to talk about Taekwondo outside of class and show everybody his moves.

Back to yesterday,  it was testing day.  Typically all students eligible to test, do so in a group setting.  Knowing that the sensory overload may set Carter up for failure,  the instructor held a private testing session before the rest of the students tested.  Sitting at the table of 3 panel judges, the instructor asked Carter to count to 10 in Korean.   He did it!  Carter then recited the meaning of the white belt.  As he was asked to move through his progressions, he began to struggle a little bit.  Kendall and I were sitting and watching and literally holding our breath.  We had our fingers crossed hoping he could pull it together.  I had to take a photo.  Carter’s girls were sending out as much good juju as we could for him!

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About that time, the instructor dismissed the other two judges as he knew that they were a distraction for Carter.  He was right!  Once the setting was as Carter was familiar with, he thrived….moving through his progressions with ease. 
What I also found touching was a moment when the instructor asked his wife to keep all students coming in to test outside so the traffic wouldn’t derail Carter. 
The testing was complete and Kendall and I weren’t sure if Carter passed.  When the instructor grabbed the belt I immediate welled up!   The breath I didn’t know I was holding began seeping put of me like a tire with a slow leak. 
The instructor came over afterwards beaming with pride and went on and on about how well Carter did.  Suddenly that place of emotion I did not know existed opened up and the river of tears began to flow.  My words kept spewing my gratitude for believing in Carter and doing whatever it took for him to be successful.   What I couldn’t articulate was my gratitude for believing in my son over and over – day after day when at fleeting moments, I really struggled to.  Without knowing it, HE stepped in as Carter’s surrogate parent when I was so fatigued and at times hopeless.  All silent and secret thoughts but they were there.  When I plastered on a smile, at times I was secretly flailing in the waters of question. 
Once again…..another member of the village it takes to raise a child had made a difference in Carter’s life.  ūüôā

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Blessings! January 22, 2015

Filed under: Uncategorized — Admin @ 5:30 pm

Sometimes life grants you blessings at the most surprising moments and from the most unexpected sources.  Today was one of those days and it has inspired me to write about it and share it with my readers.

Having a child with a ‚Äėdisability‚Äô (I loathe that word but it is the most universally recognized) can be so incredibly challenging.¬† What I have found to be most challenging to navigate is not caring for my son but protecting him from other people.¬†¬† Many times people say ‚ÄúHe doesn‚Äôt look autistic‚ÄĚ or they‚Äôll say ‚ÄúHe talks so well.¬† I didn‚Äôt think autistic people talk much‚ÄĚ.¬† These are just a couple of statements I hear regularly among many other statements from people.¬†¬† Rather than getting angry I use these as teaching opportunities.¬† I have to say that adults are the most stubborn and judgmental of my son.

Recently at Taekwondo, Carter¬†was struggling.¬† The classroom setting proved to be too loud and demanding for him to be successful.¬† He was on sensory overload between the sights, sounds, and smells of this classroom.¬† This resulted in Carter¬†running and crashing into walls, collapsing on the floor and perseverating the same phrase over and over ‚ÄúSPP!¬† SPP!‚Ä̬† (SPP is an acronym for Sara Puff Pants.¬† He brings this phrase out to annoy his sister and when he is over stimulated.¬† That is a blog post for another day.¬† Haha!)¬† Anyhow, a woman sitting on the bench said ‚ÄúWhere are his parents?¬† This is just awful.¬† Why isn‚Äôt anyone doing anything?‚Ä̬†¬† Shortly thereafter I introduced myself to her as Carter’s¬†mom and shared with her that one year ago he wouldn‚Äôt even be able to make it through the door let alone halfway into a class of Taekwondo.¬† I continued on to tell her in Readers Digest fashion about the autism spectrum, where he falls on the spectrum and how sensory input can often be a trigger for him.¬† She was immediately apologetic and of course I gave her an out.¬† The problem is that the next class I had to listen to her monologue on and on about how her neighbor cured her daughter‚Äôs autism with a gluten free diet. ¬†I just silently giggled thinking that my child is severely underweight and in 2014 he would only eat foods that were white and tan.¬† Huge progress in my house is that he will eat spaghetti sauce now as it is not white or tan!¬† Instead, what I said was ‚ÄúMy son is amazing.¬† He is not broken and does not need a cure.¬† The only brokenness would be thinking that something is wrong with him.‚ÄĚ

Anyhow, I digress.¬† Back to the blessing this morning gave‚Ķ‚Ķ.I dropped off Carter and Kendall¬†at school this morning.¬† The air was unusually crisp yet stagnant.¬† The entire walk into the building was filled with the sound of Carter’s¬†oration of Minecraft Creepers.¬† The sermon continued on into his classroom as soon as he ran into another classmate. ¬†Kendall¬†was unusually tired and a bit fussy which left me concerned that she is coming down with a cold or flu.¬† Both kids dropped off; I headed back to my vehicle.¬† As I turned the corner, a beautiful young lady came out of the side door.¬† She looked very familiar and then it dawned on me that she may be my friend‚Äôs daughter, ‘Andrea’.¬† I looked at her and said ‚ÄúHey!¬† Are you John‚Äôs daughter?¬† She responded shyly ‚Äúyes.‚Ä̬† I shared with her that I work with her Dad and that I think he is great.¬† With a pink juice stain on her mouth and big brown eyes, she lit up.¬† I walked with her to her class as it was on my way out.¬† In our walk I told her that my son is Carter¬†and she said ‚ÄúYes, I know him!‚Ä̬† Moments like this always make me excited and sometimes anxious.¬† I love that my child who would hunker in the same spot on the playground every day, avoiding conversation is suddenly making friends.¬† Then my subconscious sneers that he is getting older and sometimes kids are not very nice.¬† I asked Andrea how she knew Carter¬†and she said that he sits all alone on a piece of playground equipment and she wanted to say ‘hi’ to him.¬† I could feel my body and face beaming!¬† I shared with Andrea that Carter¬†was autistic and asked her if she knew what that was.¬† She smiled and nodded her head yes.¬† I resisted the urge to hug her but instead told her that sometimes it is difficult for Carter¬†to make friends and how much her kindness means to our whole family.

It was that time that another girl came up on my right side and said ‚ÄúOoh‚ĶI know Carter¬†too!‚Ä̬† I turned to see this long blonde haired girl who was perfectly dressed and I found myself eager with wonder as to how she knew Carter.¬† We will call her ‚ÄėKim‚Äô.¬† What Kim said was profoundly kind for a 3rd grader.¬† She said ‚ÄúCarter¬†loves Minecraft.¬† He always tells me about it.¬† I got an Amazon tablet for Christmas and the first app I downloaded was Minecraft so I could talk with Carter¬†about it.‚Ä̬† I tell you what, I felt like all of the air escaped my lungs.¬† The air stood still.¬† My body was overcome with joy, gratitude and complete and utter appreciation.¬† Those who know me know that I am never at a loss for words.¬† This morning I struggled so hard to articulate to these 9 year olds just how grateful I am and how proud of them I am.¬†¬† So that‚Äôs what I said.¬† Beaming, I told Kim that ‚ÄúI am so proud of her and that is one of the most thoughtful things I have ever heard!‚ÄĚ

Fighting back tears of joy I walked to my vehicle with a smile a mile wide.¬† Immediately I bowed my head and thanked God for the blessing he has given to Carter¬†through these amazing children.¬† I prayed for these two girls, my children and I thanked God for the parents who are so successfully guiding their children to lead with love and understanding ‚Äď not judgment.¬† I have found that children naturally love and sometimes they gravitate to exclusion and harsh judgment, which unfortunately is a symptom of deep hurt and / or a learned behavior.

Putting aside the sheer kindness and love these two sweet girls exuded, there is an even larger lesson from this morning.  Kids are amazing and sometimes we forget how much they learn from their parents and influential people in their lives.   I guarantee that these children have modeled this behavior from their parents, teachers and other significant adults in their lives.

Fortunately I know Andrea’s Dad and I can tell him the profound impact his daughter will have in my son’s life.  I don’t know Kim’s parents but I can imagine that she has learned this kindness from her family circle.  I will be sure to tell the Principal about her kindness and I imagine the message will get to her parents.

It was a timely reminder to lead my children by example and that they will likely replicate my behavior.  These kids are amazing people.  It can probably go without saying but children are born with such pure hearts.  Our actions and words to them and others leave an imprint on their hearts and minds.  The positive messages we leave will undoubtedly have a positive impact in their lives and the lives of others.  This morning is proof of that.

 

H February 23, 2014

Filed under: Uncategorized — Admin @ 9:50 pm

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To us it is the letter ‘H’. ¬†To Carter, it is one of his¬†favorite¬†things on the planet! ¬†

 

The letter ‘H’ appears on sticky notes all over the house. ¬†It is spelled out with sticks on walks and with rocks on the patio. ¬†All homework is not complete until every letter ‘h’ – big or small is circled in dark #2 pencil lead. ¬† Most recently, the letter ‘H’ was created with beads you assemble and then melt with an iron. ¬†One ‘H’ was not enough. ¬†Carter insisted on creating a pink one for his sister, Kendall. ¬†She was so excited! ¬†

 

‘H’ started appearing almost a year ago when Carter would check out books on hamsters from the library. ¬†After a lot of begging I finally caved and allowed Carter to get a hamster. ¬†The hamster¬†acquisition¬†was a total community effort! ¬†Carter’s bus driver had a gently used hamster cage and one of my friends had a couple of lonely hamsters that she was willing to relocate. ¬†Funny hamster pictures ended up on Facebook from friends who knew Carter would love to look at them. ¬†

 

Since “Sherbet” the hamster joined our household, the frequency of ‘H’ appearances has increased and Carter’s ability to draw a hamster face is quite impressive. ¬†I can honestly say that there is nothing in this universe that makes Carter as happy as his hamster does. ¬†

 

I have special interests….wine, running and having fun with friends. ¬†Carter’s special interests present themselves differently than most, which is why they are so¬†captivating¬†to me. ¬†If I had the laser light focus that he does for the things that he loves I would know so much about wine, I would be in the best running shape of my life and I would have the most nurtured friendships. ¬†

 

What I find just as touching as Carter’s affinity for the letter ‘H’ is the support he receives from¬†everyone¬†around him. ¬†His teacher doesn’t bat an eye when his homework is hardly legible due to all the circled h’s. ¬†My thoughtful friends seeing a picture or youTube video of a hamster and sending it my way. ¬†The bus driver listening to my boy when he monologues on and on about hamsters and the different varieties they come in. ¬†There are many, many more that I am certain I don’t even know about! ¬†

 

To us it is the letter ‘H’. ¬†To Carter, it is one of his¬†favorite¬†things on the planet! ¬†

 

So, in Carter’s honor I’ll post his favorite hamster youTube video for your viewing pleasure. ¬†This video has been viewed a total of 729,422 times of which I am positive we are responsible for 700,000 of them. ¬†

 

http://www.youtube.com/watch?v=uhrdq1N9sgQ

 

 

 

 

 

 

 

A Different Mold September 29, 2013

Filed under: Uncategorized — Admin @ 9:17 pm

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This picture was taken in a moment of complete frustration. ¬†I am not sure if I’ll get into the nitty and gritty detail as to why I was frustrated but I will tell you that as I looked at Kendall in this moment, it brought me so much joy! ¬†Kendall’s sheer happiness in a moment that could have been just as frustrating for her was not that at all. ¬†It was one of many moments where Kendall taught me to live IN the moment and not just struggle to get through the moment.

This blog post is not about Carter. ¬†Today, it is about Kendall. ¬†it is a dedication to siblings to those with special needs. ¬†If you read my blog post “Angels and Keepers”, you know that I have a strong belief that not only are kids with special needs a huge blessing; but so are their siblings. ¬†https://doyouunderstandbaby.wordpress.com/2012/04/03/45/

Children like Kendall don’t know life any other way. ¬†For Kendall specifically, she deals with Carter’s yelling and screaming when he is in meltdown mode. ¬†She knows that other kids are not always nice to her brother but she is sure to include him in everything. ¬†Days like today, Kendall can attest that sometimes we have to leave certain situations because her brother’s behavior is prohibiting us from staying.

Carter had a major meltdown in Sunday school which meant church was over for all of us. ¬†Jack took Carter out to get the car and I went to pick Kendall up from her class. ¬†Knowing that class wasn’t over yet, she came around the corner smiling. ¬†Her eyes lit up when she saw me. ¬†The glue on her craft project was still completely wet and she had a little paper basket with goldfish crackers in it. ¬†As this giddy girl in pink sparkly shoes pranced her way towards me I felt such joy and yet a black cloud casting a hue of gray sadness. ¬†I feel bad that Kendall sometimes has to go through this.

The picture I put at the top of this post was taken as we were waiting for Jack to bring the car around. ¬†I just have to say that the spirit of this little angel is just incredible. ¬†As we were waiting in the rain for the car, I was pissed. ¬†Frustrated. ¬†Thinking to myself “Why does this have to be so f*ck-ng hard all the time?!” ¬†Yes, I thought that right there — at church. ¬†Oy…..

Standing in the chilly rain but on the verge of an anger sweat I was fighting back tears.  All I could do was lock my eyes on Kendall Рfollowing her every move.  Forcing a smile I watched her weave in and out and all around in the rain.  She was smiling, humming and making up her own dance.  I tell you, her joy was contagious!  Jumping in every puddle, squealing with delight and begging me to join her, I suddenly found myself laughing and taking a ton of photos!

When these kids are born, I believe that God gives them an extra dose of strength, patience, and love. ¬†He uses an entirely different mold. ¬†I see Kendall’s strength on a regular basis. ¬†She always includes Carter in all play, regardless of how other kids treat him. ¬†I have seen that same strength when she is yelling “Carter, you need to answer me when I ask you a question!” ¬†In Kendall I see patience. ¬†The patience to leave Sunday school early without a struggle. ¬†She doles out her patience when Carter is stimming and screaming because he is overstimulated. ¬†Her patience is to be honored each morning as we herd Carter through all of the steps while she is independently getting ready for her day. ¬†Kendall’s love is perhaps the biggest gift I have been given. ¬†Her love of the moment is perhaps that biggest gift that God has given her. ¬†Singing and dancing in the rain when moments ago she had to leave what she was loving doing. ¬†Her love of her brother – just as he is. ¬†Her love for me as candidly, as I am giving Carter so much of my energy and time.

I am crying as I type this as I can’t even put into words how blessed I feel. ¬†I feel so blessed and yet feel like the most insufficient parent ever. ¬†How can I juggle all of this? ¬†How can I take care of Carter and give Kendall what she needs and deserves too? ¬†How do parents do this?

It is time for me to reset.  It is time for me to be in the moment and not just struggle to get through it.  My sweet Kendall is going to be my teacher.  I promise you Kendall that I am not going to parentify you at this young age.  I also promise you that I will slow down, dance in the rain, wear a giant pink flower in my hair and love the moment Рnot fight to get through it.

Thank you God for using your ‘special’ mold for Kendall and blessing me with her.