Let's Give 'Em SomePLACE to Talk About...

Life inside the ABA fishbowl.  A family who has finally made the waiver's.  A family who is sacrificing a second mortgage to get their precious child desperately needed therapy.  A family who has a child in intensive therapy typically has therapists in their home or alongside of their child for 25-35 hours per week.  Some families (like ours) hit the jackpot and have two kiddos receiving services at the same time.  Anywhere from 50-70 hours per week (some overlapping) of therapy.

Frankly, there is no place to go.  There are so few people who are walking through this daily grind that have someone who truly understands.  Add to that equation the fact that we cannot just go on a play date.  If it isn't built into the programming, we cannot leave.  If respite isn't available, we may not leave.  Shackled to the home, loving our kiddos, and completely alone with a house full of people.  (I'm not even kidding, we had SIX therapists today for a home visit....)

Before you stop reading thinking this is a "Woe is me" post, it is not.  I cannot put into words how grateful I/we are for the therapy our boys are receiving.  In fact, today during our home visit, we talked about some of the life-altering changes we have seen in just under a year.  Changes I honestly never thought possible-a haircut without tears.  You have no idea.  It's amazing, a gift, a day-by-day blessing we get to experience.  But, it's difficult.  Like, way harder than I ever thought I could ever put up with. let alone handle.  These hard-working therapists walk alongside me during my everything-my ugliest, my failures in parenting, in my marriage, even me without make up.  They see my dirty bathroom, my dirty dishes, my unswept floor.  They see dirty diapers, unvacuumed floors, dirty and/or unfolded laundry, and unmade beds.  Some of you are now wondering what it is I do, and why I don't clean.  They may not see all this in one setting, but they see where I am pitifully behind on all I need to do.  And, I have to be okay with it.  As long as I am out of the shower (and dressed), and the kids are not walking around naked, I have to be okay with whatever else they see.  For a (desired) perfectionist, this has been a big, nasty, difficult pill to swallow.

In the autism community, there is a LOT of blaming.  A lot.  People are passionate about what they believe, and if you dare to think otherwise, you will be proven wrong with one medical study or another.  But, there seems (at least to me!) to be very few places to go ("go" being a loose term for a virtual connection) to just be supported.  To "reach out" and "touch" someone who is there to just say they understand.  So, I decided to try and start that place.  I have been told that if you bring a problem to the table without a solution, you are just adding to the problem.  Not desiring to do that, here I go...

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I Choose You

The more I think about it, the more I realize Cinderella sold me a tale that I actually bought into.  She lost her mom (now as a mom, I consider this highly unacceptable!), which is really sad.  Then, she lost her dad-completely heart-wrenching.  To top it all off, she ended up with a money-squandering abusive step-mother who was hateful at best.  So, Cinderella's early life was not anything anyone would desire.  Suddenly, though, all her pain was over.  Prince Charming rode in and swooped her off of her feet.  From this point on, all of her working, cares, financial woes, and pain were over.  She had reached the "pinnacle of pain", and her suffering was over.

It seems ridiculous to admit, but I believed the premise of the story.  Not so much with my pre-husband life, although he's pretty awesome, but with my kiddo's.  Two boys on the spectrum and four miscarriages seems like perhaps I had reached that "thresh hold".  My perfect little joy baby should grow and develop exactly (if not slightly better than) the norm...right?  As she is about to reach her eighth month, she is behind in almost every area.  She won't eat solids, and will gag if anything larger than a drop is placed on her tongue.  She is very small and close to underweight for her age. She cannot sit up, nor is she even close to crawling.  She can roll over one way, and then gets stuck on her tummy.  Once again, for the third child in a row, we needed to start Birth to Three services.  I was fine with that, until I had to call the County.  Just hearing the voicemail message was like getting hit in the stomach.  It took me back two and a half years to the beginning of our journey, and I almost couldn't speak for the message I had to leave.  It took well over a day for me to "recover."

With the swiftness completely a-typical of a government office, a few days later our new case worker was in our home.  I had not even noticed all of my little one's delays.  Not only is she behind in physical development and in eating, she is completely non-verbal.  This realization sent me into a tale spin. My heart was broken, and even though I spent hours in the Word, I could not stop mourning for what was, and what could be.  I knew I was borrowing trouble from tomorrow, but my heart would not respond to the Truth I know.  And then there was Grace...in a mirror.  I saw the reflection of me holding her in her incredibly awkward position, and He whispered.  If we were not able to have a final biological child, we knew we wanted to adopt.  As I stared at her, I knew in my heart of hearts that I would have "chosen" a baby with some kind of special needs.  Not because I'm a "good person" or even a good mom, but because it's my God-given passion.  In my very short time being a (paid, out-of-the-home) teacher, my passion was for the kids too difficult for everyone else, and I loved them.  The Lord, in His abundant grace, reminded me of my passion, and gave me the quiet assurance that that passion was "for such a time as this."

My Joy baby was chosen for me, and I chose her.  Over the next few days, I quietly whispered to her, "I choose you."  I know this might seem silly to horrendous to you, and I know my words cannot do justice to what the Lord did in my heart, but the healing that came has refocused me to just love on her and all of our children.  It wasn't a quick "zap" of spirituality, but the culmination of hours spent in the Word and on my knees.  And the peace that the Lord provided won't stay if I don't stay close to Him.  Forgive me for my soap box, but it is awfully hard to hear a whisper when you aren't so close to the Speaker. 

For now, I will relish her, and all of our little ones.  I will chose each one, with all of their needs-"special" or not.  I will be grateful for the passion He gave, and the grace He daily gives. 

Dear Cashier,

Sound the alarm!  We were out of milk.  Now, this is a big deal to any family with five kiddos...or four...or any... but, to this special guy, this is a big deal.  You see, his main food group is cereal.  Honey Nut Cheerios to be quite exact.  He was hungry, and he wanted some cereal.  As I lovingly told him we were out of milk, my dear hubby offered to run to the store.  Titus decided he wanted to go too.  Alarms were now sounding off in my head.  What if the store was busy?  What if the line was too long, and he got overwhelmed?  The list of "what if's?" gets long quick.  After a moment's hesitation and a deep breath, my amazing hubby told Titus he could go.  A few moments later, they were off in "daddy's car", and I started praying for their quick trip.  Frankly, I held my breath until they returned. 

After about twenty minutes they returned, milk in hand, with a few stories.  Of course, the store was all decked out for Christmas, and Titus bounced around noticing all the "Santa" stuff.  This was the first year he even knew of the existence of Santa, and it was fun.  Richard told me of the bank teller's noticing his cute antics, and smiling at the cute little blond with his daddy, yelling, "Ho, Ho, Ho!" in his robust "Santa" voice. 

After successfully finding the much needed milk, they got in line.  The cashier noticed the four gallons of milk, and commented on how much milk it was.  Richard said something about the need to eat cereal plus five kiddos.  "Cereal? It's a little late for cereal!"  Titus picked up on the conversation, and made a slurping sound, rubbed his tummy, and exclaimed, "Yummy, cereal!!"  At this point, the cashier realized our son was a-typical, turned her head down, and finished the transaction as quickly as possible-not to say another word.  Part of me is glad I wasn't in the store with them.  Part of me is sad I wasn't there.  Not to lecture her, shame her, or let her know how disappointing her actions were, but to learn how amazing our boy is.  Not too long ago, he would not have made it through the store, let alone the check-out line.  Believe me when I tell you, I've had many "well-meaning" adults threaten to have my son, "clean the store" or "stay here without mom" or let me know what they did to kids in the "olden days."  And then, he did so much more than just survive a trip-he engaged-with words!  The magnitude of amazingness that is is almost impossible for me to share.  I just celebrated his third Christmas saying, "mom".  He is almost 6.  He couldn't even engage with his own mother for the first 2 1/2 years of his life, and now he did with a cashier. 

So, dear cashier, I understand you were uncomfortable.  Maybe you were afraid to offend.  I get that.  Maybe you have a painful story in your past-a family or friend who you watched struggle, and it stabbed your heart.  I get that, too.  Maybe, well, there are a thousand different scenarios that could fit here.  I want you to know I am not embarrassed of my son.  I am so proud of him, my heart feels like it could burst.  I am so grateful for how far he has come, for who he is.  I have five miracles in my life, and he is one of them.  And know this, if you had engaged him, he would have smiled at you, and probably come around the line and given you a huge hug.  And, for the record, he came home and had a huge bowl of cereal.  He had, after all, braved the store for just that. 

Ripping Off the Bandaid

The past few months in our home have been quite intense.  They have been surprising, painful, exhausting, wonderful, and so many more adjectives.  My special guy has been amazing.  The return to school was difficult, but he adjusted quickly.  His transition to full days, five days per week was remarkable.  Since the beginning of the school year, he has only had a handful of morning meltdowns-a stunning improvement.  In fact, he loves school so much, he actually will ask to go on Saturday's.  Not only this, but his love for his new sister has been such a pleasure to watch.  He will ask to kiss baby Chara.  He will say how sweet or how cute she is.  There never seemed to be a jealousy issue-perhaps confusion about where the little thing came from and how long she might stay, but not the crazy jealousy I was so afraid of. 

Then, therapy started.  The funding I had worked so hard to obtain came in, and we began his in-home therapy.  The first two months were easy.  It was the "data gathering" phase.  They followed him around our home, played whatever he wanted, and just worked to become his trusted friend.  As they "played" the therapists began to define his "maladaptive behaviors."  (I'm beginning to learn the clinical terms...)  In the past few weeks, they have defined these behaviors, and set in place areas to begin working on. 

For the past two and a half years, I've worked on figuring out how to stop melt downs.  I've learned the warning signs, and will stop in the middle of a sentence/action/activity to curb the coming storm.  Once a meltdown has started, I will use certain techniques to calm the situation.  In the past two weeks, therapy has seen the signs, looked them square in the face, and let them come.  They have things to accomplish, and their goal is not to calm him, but to help him learn to cope with stressors.  In the past two therapy sessions, we have seen two huge meltdowns-worse than I've seen in months.  After the second episode, I looked at his senior therapist and asked her if this was "normal" or expected.  She looked at me, as calm as could be, (reminded me of privacy laws), and said that they have seen this behavior before.  But, as momma, it is gut wrenching.  It's worse than taking off those nasty post-surgery bandaids.  I see him suffering, and I suffer with him.  I want to jump in and make it stop.  I want to protect him.  Unfortunately, though, all I'm doing is opening the "shell" for him.  Just as a baby chick has to open it's own shell to live, so must my son break open his own.  Now, this does not mean that I don't pay close attention to make sure he isn't pushed too far.  This, in no way, takes any responsibility away from me to watch over my son.  There is a process, though, that requires pain.  Just like I will never earn my first medal for finishing my first 10K without a lot of hard work (probably some tears, too...), so does he have to train for an even bigger event...life.  This is not just for a momentary pleasure like a medal, but this is so my sweet and amazing son can better function in his daily life for the rest of his life. 

It is humbling to watch him.  As difficult as it has been at times to be his momma, his work is SO much harder.  He has to learn to speak a language that is not his "mother tongue."  He has to learn to quiet his body when it wants to be "socially inappropriate."  He has to learn not to allow the overwhelming pressure of over-stimulation make him run.  This little boy is one of my heroes.  I'm so grateful the Lord chose me to be his momma.  I have this amazing gift running around my house, teaching me to cherish every single moment, and to never take anything for granted. 

I Remember

Twenty years ago today was a pivotal, life-altering day in my life.  I remember it like yesterday. 

I remember going to school and sitting in the gym...feeling like an elephant was on my chest.
I remember making it to first hour, and just needing to go home.
I remember my teacher, Miss Smith, mocked me and said to me, "Next time, come to school when you are healthy."
I remember my dad picking me up from school in the little black Nissan-full of irritation because he was in the middle of a bathroom remodel.  (He loathes house maintenance!)
I remember him sending me up to bed-you don't get to come home from school and play! 
I remember where my bed was-against the wall, in the corner. 
I remember hearing dad come up the stairs, thinking I was sleeping, and me making sure he heard me wheezing. 
I remember the doctor's office.  He checked my breathing, but no pneumonia, no pleurisy. 
I remember him walking out of the office to check a medical book.
I remember sitting on the table, looking at my dad, begging him to ask a question to the doctor.
I remember the little cup of water.
I remember the finger stick-I even remember the big meter they used.
I remember the doctor walking out again.
I remember my dad's tears...my heartbreak for his pain...and my confusion.
I remember going home to pack.
I remember the suitcase I used.
I remember my dad's phone call (from home...this was before cell phones!) to my mom, telling her we were going to Children's. 
I remember her response-thinking he was trying to cover for breaking one of the bathroom tiles she had bought!
I remember the plastic chair I sat in outside of the Admissions desk. 
I remember the bed, and the sudden amount of flurry.
I remember my first IV, the veins rolling, me trying to be still, the pain!
I remember Joan, my nurse.  "You can be anything you want to be, except a missionary...but why would you want to do that?!?" 
I remember the intern doctor I thought was awfully handsome.  (Give a girl a break...I was 13!)
I remember the visitors-I had a lot of visitors!
I remember the balloons-some even had my name on them.
I remember the teddy bear with the pacifier and the pens dad bought me.
I remember the praying bear Church bought, with satin angel wings.
I remember the hospital pull-out bed my mom slept in.
I remember the hourly arm or finger sticks they did.
I remember the team of doctors and nurses talking about how "lucky" I was-a few more hours, and I would have been in a coma, that would have caused my death.  
I remember waiting to be "cured," for when this crazy roller coaster could be over, and I could go back to drinking a Super-sized Mello Yello without trying to figure out how many carbs were in it. 

Like I said, a pivotal day in my life.  What I saw as punishment, God used as a refining fire to draw me to His desires for me.  To limit me, so I would have to listen to Him.  To help me to see how many abundant blessings He poured out on me.  To never take for granted life, and to appreciate the lives He graciously entrusted to me.  I learned that faith is not measured, the body will fail no matter how "healthy" we appear, and that we are only sustained each day by His loving, gracious, and sovereign Hand.  And I am grateful. 

To Cry or Not to Cry

It was a rough morning.  Saying anything different would be a pretty big lie.  He didn't want to get up.  He didn't want to get dressed.  He didn't want to eat.  He didn't want to brush his teeth or go to the bathroom.  He let me know loudly and with tears.  The list could go on, but I'm sure you get the idea.  We finally got out of the door, into the car, and drove the two minutes to school...edging on the late side, but close.  I prayed with him as we walked up to school, and he was settled for a moment.  A police officer was on the sidewalk, making sure kids and parents were following the street crossing rules.  I was going to stop and "introduce" Titus to him, I don't want him afraid of those who protect him!  As we walked by, Titus said, "Oh! Hello Officer!"  My surprise and joy bubbled right out of my mouth, and I didn't even care.  I was thrilled to the point of verbal exclamation that my precious boy knew, respected, and acknowledged the officer.  The officer greeted Titus, they shook hands (melt my heart!!!), and then we proceeded on. 

As we neared his entrance door, things started going south.  I got down on my knees, and held him.  Another prayer, some back rubbing, and a few kisses to try to calm him and let him know how much I love him.  Then, we sat on the sidewalk, waiting for his teacher.  She came out along with one the extra staff assigned to the room.  Titus was ready to run-pacing, crying, and verbalizing his desire to go home.  I looked to one of them, and asked her what they would prefer I do.  She told me to leave him there, and walk away.  I cannot express the vice-grip fear took at that moment.  If you've ever had a strong child run away, or watched an unknowing toddler run in front of a car, then you will know the almost paralyzing amount of fear I had.  I walked away, terrified at any moment I would see him darting toward the street.  As I walked down the sidewalk, other mom's were discussing their child's new friends in class.  The majority were in his class, but no one brought up his name.  So, I braced my shoulders, and walked as quickly to my car as I could.  Don't cry, not yet.  

An eternity later, I got to the car.  Breathe deep, don't cry, be tough.  I kept thinking this to myself over and over.  A moment later, a still and small voice chastened me.  Bring your tears to Jesus.  I think it will be one of those moments I will never forget.  For the first time in my life, I realized Jesus was waiting for me to crumple into His arms.  He completely knew and understood the heart-wrenching pain of a hurt child who is not relating to his peers.  I did not have to bare them alone.  I didn't even have to just, "take His hand."  I could fall-weak, broken, afraid...terrified, into His waiting arms, and He would comfort as only He can.  So, I cried.  Not the puffy-faced "poor me" cry, but a joy-filled release that let Jesus heal.  I'm sure I cannot put into adequate words how freeing it was to know that I am incredibly "not tough" and Jesus wants me that way-and meets me right where my knees fail (even when I'm sitting up and driving a car).  

Taken For Granted

I began a list.  This list is slightly different, and not necessarily inspired by a quite famous book circulating among Christian ladies at the moment.  (NOT that there is anything wrong with her list!)  I think sometimes, in the mundane/the "normal" it is easy to take for granted things that don't come to every parent (or child).  As I have written about "several" times before, the Lord in His gracious sovereignty has given me two special boys who have truly helped me see amazement and wonder in the normality of daily life. 

Things I will never take for granted:

1.  Shoes-and the ability to wear them
2.  Socks-whether they have Spiderman (his first pair ever!), Avengers, Skylanders...and now just plain ole' white ones...a little boy willing to wear them.
3.  Cookies-you would be amazed at how helpful a cheap, off-brand oreo can be to encourage a will to bend.
4.  Giggles-there was a long time in which screaming was a LOT more prevalent than a belly laugh in our home.
5.  Hugs-After a meltdown.
6. Hugs-spontaneous, for no reason at all.
7.  A loving teacher-we have been abundantly blessed to have two years of amazing teachers who have loved our (sometimes unlovable) son.
8.  Words-they took SO long to come!  Whether the word is simple and a statement in and of itself, or a whole sentence-amazing!  The words are different than others' might be, but they are his, and they communicate...and it is awesome.
9.  A wave-the releasing of me.  The "it's okay momma, I'll stay here" kind.  The "I trust you to come back, and I'll go in" gesture...that sometimes comes with a blowing kiss.
10.  A hug and a kiss goodbye-sometimes two or three times before he can walk into school...making sure that I know he loves me...and wanting to be reassured in my love for him.  And I love it each time.  Sadly, I've seen other mom's on their second round of "goodbyes" get irritated at their child-yelling at them to get into school/back into line.  I hope his last forever...but when he hits that age that boys do...when it's just not "okay" to show physical affection to your momma anymore, I'll have some sweet memories.  And yes, other mom, I see you scoff...and I'll take your scoff any day to have an extra moment with my boy.
11.  A hand slipping into mine-melts me EVERY time!  He has just finally reached the point where he doesn't run away with every glimpse of freedom, and will actually slip his hand into mine, walking right beside me.  I'm not going to lie...it has caused me to tear up more than once.
12.  Siblings playing happily together-SO much training has gone to get even a few minutes of this wonderment.  The grace displayed by (especially) the older two at times to achieve happy harmony is amazing evidence of the Lord's love of our family.
13.  Obedience/Cooperation-Just last night, he obeyed when I asked him to pick up his cars (scattered all over the living room).  This used to be an impossible feat.  But, last night, he did it.  He was excited to obey, and I was just so amazed at how far he has come-and hugged him tight enough to make him wince. 

As I stated, this list is so far from exhaustive.  So much of these improvements/advancements have come in the last year.  It is so overwhelming (in SUCH a good way!) to watch him grow.  Psalm 139 states that from the womb, God knit every person together-designing and forming in His perfect way.  I get to stop and bask in the glow of His creation in my little ones.  It is beautiful and wonderful and so many other adjectives.  It is not easy, it is humbling, and it is unsure.  I think that is one of the most amazing things He has taught me.  I don't know what the future holds, but I know Who holds the future...and that is finally okay with me.  (Not that it matters, since it is the truth.)  As I've been teaching my older two, God designed our family in the perfect way.  He knew we would all love each other better than anyone else in the world.  He knew we needed the challenge to draw us to Him, and He loves us enough to want us to run to Him when it is difficult.  And that is quite hard to take for granted.