What the eyes see and the ears hear...

Today, so far, has been a deficiency kind of day. It started off pretty good, busy getting kids ready for the day, driving them to 3 different places. etc. Then it got quiet. I was in my office (my van) with just one child, my Lijah. We were headed to the ophthalmologist today for a 2 hour appointment.

Now, if you are a typical kid, shoot-even a typical adult, 2 hours is a loooooooong time. For Lij it is 10 times worse.

So I prepped. I prepped Elijah. Signing that we were going to the doctors, then school. Only in that order. That the bus would not be coming today. I called ahead to remind the doctor's office that we were coming and could they have our room ready for us when we got there. I filled out all his paperwork the last time we were there, submitting insurance and licenses. I brought all the tricks-Ipad, Leapfrog thing, cookies, homeopathic anxiety meds, even no-spill bubbles.

We got there and he came in perfectly, went into the room perfectly, played the Ipad perfectly, blew bubbles perfectly. All for a little over an hour as we were waiting for the drops to dilate his eyes. By the time the doctor came in, Elijah was done. The doctor was great. Elijah's shrieks and screams didn't phase the doctor. I politely tell the doctor that "If Elijah had words, he would be saying, 'I've been here too long. I'm all done.'" But he doesn't have those words, so I say them for him.

He finished the visit--I would call it a success! Besides the verbal lashing, he did well. He sat still on my lap and was such a good, brave boy.

When we got into the van, I got a message from a sweet friend of mine. She just found out today that her son has the same type of hearing loss as Elijah has. I lost it. I had visions of getting that diagnosis with Elijah.  The pain we felt, the mourning we went through, the yelling with God we did. I cried for my sweet friend. My emotions apparently were just dormant, wakening when needed. I can empathize with exactly how she is feeling.

Now, 10 years later almost to the date, I know there is hope. That God made a language for us. God made technology so that we can give Elijah the OPTION to hear like we do. And the reality is, God can heal. Heal what? His hearing, my bias, our sadness. And He can bring hope. Hope for great communication (whatever that looks like), hope for internal healing, hope for technological assistance.

So in the quiet on the way home, I thought about these two deficiencies that my oldest son has. He has his daddy's sight and non-working (well, sort of with his implant) ears. My mind started to tick of other skills that are lacking.

Then I stopped myself.  I thought of how proud I am of him. I'm so proud that the teacher's letters home keep adding new signs that he is signing, new academic skills, new social skills (well, those are really lacking, but still progressing).  I just kept thinking of all the cool stuff that Elijah has been doing lately.

So my prayer is that I can mourn the deficiencies he (we) have but that I (we) celebrate the excessive joys he brings us.

Poop Happens

I really thought that I was in the clear. It had happened to friends of mine, even my best friend. Her first child did it NON STOP. I silently listened to her woes many years ago, saw her bleach-stained carpets, and thanked God it wasn’t me. But I have (pretty much) fully potty trained my 4^th (and last) kid during his 24^th month of life, I was at the finish line!  
 

Nope.
 

He pooped in his diaper at nap, flung the poo around the room, finger painted on the crib, rubbed his butt all over the multitude of blankets and sheets in there, and then peed out of the side of the crib just as I came in to check on him.
 

As he was in the tub, this was my conversation with him:
http://instagram.com/p/gO9EfHiaCe/#
 

Then tonight, when I was busy with the 3 other kiddos, Asher snuck off to the bathroom. He got out the toilet scrubby thing (from the garbage) and proceeded to “clean” the toilet for me.
 

With his hands.
 

 In a toilet full of urine from another brother who can’t understand WHY we need to flush the toilet.
 

As he was in the tub, this is my conversation with him:

http://instagram.com/p/gO8nDYCaBs/

I love this kid sooooooooo much, but I’m not quite sure how to explain that his borderline OCD/germ-a-phobe mama’s head will explode if he keeps this up.

Just another manic Wednesday, oh oh-oh

The day started at 3:00 a.m. with Judah sneaking into my bed to cuddle.  He has always been a shitty sleeper.
Elijah was next at 5:00, so I moved into his bed to silently beg for a few more hours.
Asher started screaming at 6:00, so onto the couch trying to snuggle him with shushes.

A morning of Asher eating toothpaste from the tube, Judah putting his clothes on inside out and backwards (I only made him switch his shirt out, sent him to school looking like Kris Kross), realizing I forgot to pack lunches and get out clothes for the day, and a never-ending screaming toddler.

The 2 phrases heard between 7:00 and 8:20 were
1) "Don't (hit, bite, push, etc.) your brother!"
2) "Please apologize for (hitting, biting, pushing, etc.) your brother."

I have been back and forth to the dentist for weeks trying to figure out why my nice new ceramic filling that replaced the poison silver one was hurting me. I need a root canal. Cha-Ching.

Coming home from dentist and Joann's, I walked into a beautiful scene of all the kids at the table with a bowl of Mac n' Cheese, eating sooooo nicely. (No veggies on those plates, but hey I'm not complaining. I didn't have to cook them anything!) Two minutes into this serene event Judah, our resident "Spiller of EVERYTHING", knocks his bowl over and breaks it. It is plastic. Really?!

I look at my calendar and realize I have a Halloween get-together I am hosting and my children do not have costumes. But atleast the Mother/Son dance that I forgot to buy corsages and boutonnieres for will be fun on Friday.

My mom stopped over and completely shot bedtime. But we needed that. We needed FUN, creative, and messy. Even though I was still a little crabby, it was exactly what we needed. The kids stayed up a little late, got a little messy, and painted (the base coat) of some pretty amazing pumpkins. They match the costumes that I have yet to make for the party on Saturday.

I love redemption. I love joy that comes when I least expect it.

Do you ever get an opportunity for joy in the middle of chaos?

Yeah, I really read it for the articles

Honestly, I usually pick up the Metro Parent Magazine to check out their GREAT resource of their calendar for awesome family events around town. But this time, I really did read the articles. :)

A friend of mine referred me for an article her friend was writing. The series is dealing with mamas who are going back to work after taking time off to raise kids. I felt a little stupid at first because at the time of the interview, I had only been back to work for a week! So not-so highly qualified.  I guess insightful just the same.

But, if you are out and about and want to see the funniest picture of Eric and hear my rambling thoughts that were eloquently woven together by a talented writer, grab the zine.


Here's the link:
 http://www.metroparent.com/Metro-Parent/October-2013/Making-the-Shift-From-Stay-at-Home-Mom-to-Working-Mom/

Community

Working at my church allows me to get a little bit of a bird's eye view of things. Particularly the children's ministry. I see how faithful, dedicated, and loving our volunteers can be. I see beautiful glimpses of kids getting excited about Jesus. I hear screaming, um...singing of praise (well, the whole church does). I see messy real-life problems. I see lots. But today I paid attention to how much it impacts my children.

Elijah sat in church with Eric and our beautiful friend Laura, who I can honestly say loves my children. Although, I think it is completely impossible for her not to love ANY child. That's just the kind of lady she is. Laura asked if she could hang out with Elijah once per month during the service and leave with him (to blow bubbles) when he reached his limit in the sanctuary. Today was her first day to hang with him. She blessed us by allowing Eric to stay in service (which I got to join him for one song) and caring for our boy. She is truly a blessing to us. Community.

Manny gave me a hug when I walked in from work today. I asked him, "What did you learn about today?" He answered with "When I am afraid, I will trust in you Palms 56:3". I was floored and I giggled that he said Palms instead of Psalms. I hadn't taught him this. We actually have never sat down to memorize scripture. But this! Amazing. For all the anxiety that he has been feeling from school, from being away from me. This is a great scripture to know.  It's due to leaders and teachers in the elementary ministry that taught him this. Community.

Judah sat on my lap and told me about Joseph. "See mom, he was really smart and there was a famine and he fed everyone." Spot on baby! It opened up this conversation about Joseph (Judah knew he had lots of brothers, kinda like him), about how his brothers treated him so BAD, but he forgave them and fed them when they were very hungry. We were able to apply this to HIS life. Judah's 4 and he got it. His teachers taught him a story from the Word and he GOT it. Community.

Asher. Well, Asher didn't tell me a story, a scripture, or had a special buddy. But when I dropped Asher off, he was pissed. He screamed and kicked a little, but his teacher held him, walked him, calmed him. It only took 2 minutes, but as I walked by the classroom several times (not to check just on MY kid or anything), there were like six 2-year-olds and two adults sitting on the floor playing. Community.

As I was flipping the 4th load of laundry over, these were my thoughts. I love my community. I love how intentional they are (or sometimes unintentionally intentional) with me and my family. Gushy sappy thoughts for the night.

The 'Nother Mothers

We have had two women step into our messy lives and, whether intentionally or unintentionally, helped us mother our children.

The first 'nother mother was Heather. We met her the year she sent her youngest to kindergarten. She was our neighbor that morphed into much, much more than that. She has been there for major, major life moments for us.  When I dropped Elijah off at his first day of preschool, Eric called her to console me as he headed off to work (I was sobbing uncontrollably). She walked with me around the park and told me about her experiences dropping her beautiful boys off at school. She calmed me; one of her many, many gifts. Heather saw me though the birth of our third son Judah. Her, and her family, cared for our two boys while I was in labor. And after he was born, Heather cared for Judah as he was her own. She would hear him screaming through the walls of our house and run over to grab him. She was the reason I didn't need anti-depressants! While seeing her let her dogs out; I would open the window and say, "Hey, you want a baby!?", to which she would almost always reply yes. Judah was the shittiest baby ever (the kid cried and screamed all day for me), but he calmed immediately for Heather! She was magic and he loved her.

After we moved, it wasn't as easy to keep in touch. But she was, and always will be, the original 'nother mother. 

The second 'nother mother comes from school. Becky came into our lives as Elijah's original para-pro from his first classroom in Birmingham Public. She (and Lynn) transitioned him, welcomed him, cared for him, and taught him potty training! We had been trying for 3 years and it took them 3 months! Becky really stands out as a 'nother mother because she moved away from her longtime team to stay with Elijah when he went to a new school. She stayed with him through new school years and new teachers so that he would have a consistent and familiar face. She is his favorite. When he sees her picture, Elijah lights up and does his happy dance. Becky is able to tell my son's moods; she knows his language; she knows his migraine triggers; she's my eyes and ears in the classroom; she's his constant. 

But all good things come to an end. Becky has selflessly put aside a career using her Masters in Counseling to see Elijah through many transitions. I'm happy to say that she is headed to a job to use those skills. Tomorrow is her last day with Lijah at school.  It's a good thing, but I'm still sobbing as I write this. I'm so incredibly thankful that Becky has successfully transitioned Elijah to a wonderful, super awesome new teacher over the last year. She has helped him feel comfortable and helped the team learn his "quirks".  He is a better person because of her. 

I'm not sure if another 'nother mother will enter our lives or not, but these two have left a big impact on us. 

ASD vs Neuro-typical: Back to School Edition

I should be working on lesson plans for tomorrow, but I should get these swirling thoughts out of my head first.

Yesterday was the first day of school. Today was the second. My kids surprised me with their reactions to a) going back to school, b) the new routine, and c) mama going back to work.

Here are my observations.

Going back to school
Elijah LOVES school. He loves the routine, his teacher, his interpreters, and his beloved Becky (who will be moving on to a job in her field very soon here). He loves going back to the same classroom with most of the same kids. There is comfort in that planned out routine. He was standing at the door anxiously waiting for the squeaky brakes of the bus. When he finally heard them, Elijah did his sweet little happy dance. The teacher called me that afternoon to tell me what a wonderful day he had. *Sigh* It has been a good start.

Manny has not had a good start. On the first day, there was a glitch with his residency paperwork that left us in the office for 10 minutes figuring it all out. He was the last kid to walk into class. But, the first day was pretty good overall. The second day of school (today), my mom dropped him off and he cried, clung to her leg, and would not let go. He wanted mama and I couldn't be there (enter super duper mama guilt). They eventually got him calm and in the room. Later, I received a phone call from the office saying he was still having trouble but the sweet secretary with a light British accent pulled him out, made him feel special, calmed him down, and brought him back to class. She even called me to ask if I wanted to leave him a message to encourage him through the rest of the day. This is the note he clutched all afternoon:

He did great the rest of the day. I am SO thankful for his amazing teacher and the wonderful staff at his school.

Tomorrow I need to drop him off at friend's house so he can get a ride to school. I'm praying things go well. 
 I need them to as much as he does.

I can't really say why this is happening so backward. My ASD kid should be freaking out and my neuro-typical kid should super pumped, right? All the praying and prep work around me finding a job revolved around concern for Elijah. (We were blessed with a job that I can get him on the bus and Eric will be home to get him off the bus, so he is not effected at all!)

I'm not sure that I have a resolution other than intense prayer that my other 3 boys can go with the flow of different babysitters 3 days a week and a mama who shows up to work just a smidge late everyday because she wants an extra kiss from her baby or she is trying to fit in dropping kids off at school to maintain a sense of normal.

Shoot, I'm supposed to write about 2 other points. Well, another day perhaps. My man just brought me some ice cream and I should probably get to those kick-ass lesson plans.

Church: Place of chewies, backrubs, and communion

Today is Sunday. It was suppose to be the last day with Elijah's church parapro (cousin Michelle), but she had to cancel, so he was sitting with us. His usual pattern is to sit with us in "big" church for about 30-40 minutes, then leave with Michelle for his reward of blowing bubbles upstairs in the gross motor room. Sometimes he can sit longer, sometimes not much at all.

The noises, which I don't really notice unless it's totally quiet like at church, are the slurps and wet chewing on his favorite chewy: a rope of seatbelt material. Every few minutes there is sudden grab of our faces, drawing us in for a nose rub. This is usually accompanied by snorts and quieted giggles.

The actions, although very quiet, are very busy. Our hands are constantly moving. They are rubbing his back, or scratching his head, or massaging his legs/arms. Today I was "drawing" on his hands with capped pen. Eric and I looked at each other with a grin because he pulled both of our hands toward his back to scratch. He craves the sensory input. It has a calming effect on him and we are happy to busy our hands if that helps him.

Today was special. I usually miss service because I am working, but as miracles happen, I was in service! We three sat in a back pew of our full church. On the end of course in case we needed to bolt outta there. My Lijah sat in between us and listened, leaned, and loved. He stared at the beautiful windows. He listened to the wonderful music. And, he walked with us to take communion.

Thinking back to this morning, I get teary eyed. My crazy, unpredictable, loud, nutball ASD kiddo WALKED up with us to get communion. (He didn't take it because we weren't at the gluten free station, but still.) My church family got to see him in a different light. And we got to see him in a different light.

On days that seem out of control and completely messy, I will challenge myself to remember this day. That my child, my Father's child, sat with me in church. I can't say how much HE took in, but I sure was reminded of the blessing of small victories.

One of the beloved chewies. They get washed almost every night. :)

It's all in a name

What to name this thing? That was my excuse for not starting a blog for the past few years. Then it happened. The air conditioner broke this week.

Elijah, my sweet almost 10 year old who has labels like autistic (ASD), deaf, and cognitively impaired, was having a really rough day.

The windows were open to let the cooler breeze come in. I jumped in the shower (a rarity which is gross, but true). While I was shampooing I heard Elijah start to get vocal, then more vocal. His voice, which is a crazy mixture of deaf sounds and nonverbal ASD stims/grunts, was getting louder and louder. The screams of annoyance  were turning into screams of anger and crying.

I know when the windows are open, people who walk by the house peer in. I can only imagine their thoughts: What's wrong with that kid? Is he hurt? What are they doing to him? The neighbors avert eye contact. So we keep the windows shut, keeping our world away from the rest.

That's when the name popped into my shampoo-filled head: living with the windows shut. It is a true statement at it's core, but also a great metaphor.  I think there is a lot that ASD has held us back from in life and this blog will touch on how we have mourned that and figured out to live within those new, and ever-changing, boundaries. But in conjunction with the bummer stuff comes the amazing. The victories, the joys, the lessons being taught and learned, and the craziness of living in our family.

Welcome to Living With The Windows Shut.