Sunday, November 22, 2015

ACTS of Prayer

When I remembered to check out those other blogs I'd written years ago, I reread each one of them.  Some were reruns of already published posts, but a few were brand new.  ACTS was one of those brand new ones.  I wanted to share it here (with a few edits) today.  

Sunday is such an important day for me - it's a family day, it's a relaxing day, and it's usually a Church day.  I feel so at home when I go to Church, and today, with the help from a friend, we got to go to Church as a family.  Well, almost a family.  

While the rest of us go, Ronan will be at home.  He will be safe, he will be happy, and will be comfortable.  He won't join us yet, but instead of having to split up and go to different Masses, my husband and I will get to sit together at Church with most of our happy crew.  The last time we were able to do that was almost six months ago.  

We're still working on getting all 7 of us to Mass.  But until Ronan can handle it, we'll leave him in capable hands for the hour that we are away.  I'm praying that he'll be able to with us soon.  As I pray, I will remember the types of prayers I'd written about a few years ago...


ACTS, originally posted on the AO blog February 2010:
I joined a faith-based mom's group just a few weeks ago. I needed too. I had been moving like a robot for some time trying to keep up with my family's full calendar. I hated that. I started to show emotions that would pop up at the worst times. Like when I was being the cranky, yelling, hurry up get your shoes on because we have to leave NOW stressed out Mom. I was also the weepy can't get anything done right Mom while crying in the car in between appointments as I anticipate another busy day with no chance to rest. That hasn't happened more than a few times, but when I started to get completely overwhelmed with life in general, I noticed one aspect of life was being pushed aside almost completely: praying.
In order to get a grip on life, I needed to learn how to let go of, or at least learn how to handle, some of the daily stresses. I needed to not live in my four walls that were quickly caving in but instead go out and find something specific for me. It's not a selfish 'must have' but a desperate 'need to' survive. I stumbled upon the mom's group at a parish I pass on the way to my son's school. I barely have a chance to do more than attend Mass at my own parish on Sundays, so I welcomed being a part of a like-minded group of moms looking for religious enrichment. It helped that they offered day care at a very nominal fee, so I signed me and the kids up for a few-months long study of praying. While Ronan is doing his best with his instructors at school, I get to stop, listen and believe again.
We're studying a book about prayer. Don't get me wrong, I know how to pray. I do it all the time and sometimes over and over and over again all day long, God, puh-leeeze help me. Lord, why is this so hard? I haven't shaken my fist up toward Heaven but I do raise my eyes in absolute amazement that I have been handed all that I have been handed. I look down at the utter chaos that is my home and shake my head wondering why I can't put it all back together. I was hoping to breathe a more joyous breath of prayer instead of the woeful words I have been using. Luckily this last week's chapter talked about four specific types of prayer, and I knew it was perfect for what I needed.
I have a dream of one day being able to do some public speaking about our journey with Ronan. I have helped a lot of people along the way but it's usually in the comfort of my home and in my jammies at my computer. Many people in return have helped me with encouraging emails, helpful websites and even a handful of phone calls that adds a personal, human touch.
If I could stand up and say thank you to all of those people in this community who have touched my life, these four types of prayers (using the acronym ACTS) would help me with my speech. I would speak from the heart while scanning the crowd as I shared the following. Even though my words would be specifically directed to God, I have a feeling many parents of children with autism or other special needs would echo the same thoughts. So, here goes. This is for you and for you, and you, and you and You:
Adoration: Dear God, I adore You for all that I have been given. On my worst days, when things are at the lowest, lowest, low, I know that things can only improve. For that, I am amazed and so totally grateful. How did you know that I would learn to be so strong to do and deal and overcome? Even if I doubt myself for a second, You show me how much You love me when You entrusted me with this child. My past may have lead me on a path yet unknown to me but You have provided direction for the future just when I need it. I am humbled to be here.
Confession: Dear God, I'm scared to death! I am so afraid of the future! I see other children make their leaps and bounds, their gains and their recoveries, but I am terrified that my own child will regress or become aggressive, and worse, even die from this! I fall short when I give up. I feel weak when I don't believe. I am sorry for the despair I feel, and I promise to do better and to try to keep more hopeful instead.
Thanksgiving: Dear God, Where do I begin? I am surrounded my many parents and providers who believe in Ronan. They even believe in me! These people happen to walk into my life at a point when I may have been on my knees begging You for help. You knew that I needed that. These people have helped me form the hero who is my son. Thank You for this chance to be a better person and to be a loving Mom to this child, Your creation...Ronan!
Supplication: Dear God, I know that Your plan for our lives is already written. You know what my future will be. You know how Ronan will fare in this life and in the next. I ask for continued guidance, for patience and for resources to learn, to grow, and to help. For Ronan, I ask for clear speech, cognition, and healing from whatever pain he is in. I ask for continued blessings for our family as we all learn to work and help Ronan with his special needs. His siblings are growing up with more compassion than most other children their age. I pray they will only have compassion for Ronan and for other children like him. Please, God, bless the other families who are walking this same journey and give them hope as You have given mine. Together, we will believe.
Amen. Amen. Amen. Amen.
I pray daily.  Some days, it feels like I pray non-stop.  You know my prayer: for Ronan, for his healing and recovery.  If you have specific intentions for your child, let me know.  I would love to add them to our family's daily prayers.  
xo, Cat

Tuesday, November 10, 2015

Listen to Your Heart

"Sometimes you wonder if this fight is worthwhile..."

While that lyric comes from more of a romantic-y 80s song, think of that particular line in the form of a message from Ronan to me.  I heard it yesterday being blasted from someone else's car in the Walmart parking lot.  It played as Ronan was desperately sending a message:  he was communicating to me that he did NOT want to go into Walmart.   

It was supposed to be a fun shopping trip.  I didn't need to get anything, but we were going so Ronan could practice shopping.  We haven't had much luck shopping at Walmart lately.  He can go in and out of other stores with no problem, but I'm not sure why he struggles with Walmart.  I don't know if it's the bright lights, the high ceiling, the constant noise, the many shoppers, or if his legs hurt or if he doesn't think he'll have the energy, but it's become quite difficult for Ronan to even get out of the car let alone walk into the place successfully.  Whatever the struggle, we were face-to-face with it again yesterday.  

Every time I tried to unbuckle Ronan, he blocked my hands.

Every time I tried to softly encourage Ronan to go with me, he signed no.

Every time I tried to think of something positive to say, Ronan looked at me with sadness.  

When he began to vocalize his responses, and when he welled up (which he never, ever does) I knew that the trip was a bust.   

"And there are voices that want to be heard..."

Ronan was voicing his response.  He was definitely trying to get me to hear them.  But was I listening?  No, I wasn't.

I'll give him credit, though.  Ronan communicated well - he vocalized, signed, and typed his request to not go in.  And yet, what did I do?  I tried one more time to convince him to go in the store with me.  Even with the promise of french fries for his troubles, he said NO.

"Listen to your heart when he's calling for you..." 

What was I to do?  Force Ronan to go in?  I've tried that before.  Forcing a non-verbal child with autism to go into a store he doesn't want to go into doesn't work. 

So instead, I listened.

I got back in the car.  I buckled up.  And we drove away.  We didn't go straight home though.  We went to another store.  I'm so glad that we did.  There, Ronan successfully browsed, picked out an item, stood in line (behind two customers and in front of a screaming toddler), and bought a new-to-him Wii game.

Did he get his way?  No.  I don't think that he did.  In rerouting our day, we found success elsewhere.  Ronan went out.  He followed directions.  He made others aware of his disability.  More importantly, he made others aware of his ability.  Ronan shopped, he waited (mostly) patiently, and he made a purchase.  That's a whole bunch of progress if you ask me!

Instead of letting a potential incident in the Walmart parking lot rule or ruin the day, we found another solution.  That solution allowed us to skip Ronan's frustration, to skip my frustration, and to skip an epic meltdown.  

We skipped a quick trip to Walmart yesterday, and that's okay.  
I don't like shopping there so much either.

xo, Cat

Monday, November 9, 2015

The More Things Change

Right before I went into Church yesterday I remembered that I wrote a couple of blog posts for another group several years ago.  I'm not sure what triggered the memory, but I made a mental note to look for those posts when I went back home.  That would have to wait.  Instead of sitting down to read, we all piled in the car and went to the park to play.  

After things settled down late Sunday evening, I finally had a chance to look for those old blogs.  Some were re-runs of my AofA posts, but a few were brand new.  I had hoped to write more for AO, but lack of time, my family's growing needs, and other commitments kept me from adding any more.  

While walking down memory lane, I reread the few entries that I have on the site.  I wanted to share one of them today here.  I obviously needed to get a few thoughts out of my head when I wrote it. I don't remember writing it, but the title I chose certainly got my attention!   

Here it is again (and edited just a tad).  


This Blows 
While I try to be upbeat and hopeful, there are days that I just can't keep smiling. Ronan looks so normal at first glance. Strangers don't understand why he behaves the way he does when they first meet him. It's painful in those moments to either try to explain things to them or to choose to move faster and farther away from them.
I struggle to envision Ronan as typically-abled on my own bad days. Sometimes I just want to blow off my responsibilities as a Mom, but I know that I could never do that. I have five kids, and they all need me in some special way. Ronan is my most needy on most days as he has many medical issues.  Those include mito disease, autism and cognitive delays. As I try to manage his needs, as well as my other children's, my life includes weeks that are tornado-like.  Those weeks should have high alert statuses to warn others what to expect.
Ronan walks through his life waiting for directions as he's told to do many of tasks each day. My other children dance around their brother as he moves at a slower pace. He tries to get out of their way while they do their chores or finish their school work they do on their own. Ronan looks for activities that keep himself happy and occupied (and away from me as I'm constantly redirecting him). My children thrive on heartfelt encouragement and their excitement for life has struck a new interest in Ronan. He has started to look for approval at certain parts of his day which is so rewarding. He seeks more eye contact when he signs a request for snack. He's even trying to fingerspell some of his words! He waits for verbal praise when he is able to say a word since it has required so much oral-motor planning on his part. Ronan's patience level is much lower than my other children's, but he works oh, so hard at that when he really, really, really, really wants his movie on right now and please, please, please he lets me know as he signs for me to turn it on quickly.
Ronan has also had a new surge of awareness to our world and in his own family. He's seeking me out more even though I'm the one that makes him do so much work like his ABA and speech therapy homework and activities. I don't mind this seeking Ronan is doing since it includes hugs and cuddle time. I cherish these affectionate moments when Ronan puts down a toy that he's become attached to, walks directly to where I am, and puts his arms up for a hug. I immediately embrace him because for years any type of hug that I attempted to give him would result in him pushing me away. The sensory issues were far too severe to allow for proper hugs. These hugs that I'm greeted by now are treasures.  The hug isn't a 'quick thankyouverymuch; hug; now, he won't let go of me. All of a sudden, the quick hug I'm expecting turns into a crouched down, sitting on the floor still holding Ronan in my arms and now nesting in my lap hug. While he sits, we rock slowly back and forth in silence and let the world wait for us.
Another surge of awareness is happening too. We increased some of the therapy and educational opportunities for Ronan. Just today, after years of hoping and wondering and waiting, another new skill emerged. Ronan's private speech therapist has been working with Ronan for only 3 months and has done more in those few months than other specialists have done ever. Our new therapist got Ronan to blow through a straw! I witnessed that magical moment today as my child sat and waited patiently and willingly to do just what Miss Erin was showing him to do. For Ronan to accomplish this major speech goal of blowing through a straw in order to make something else move (a cotton ball) will certainly open more doors for him. His vocabulary of 4 words last month also grew today at therapy when Ronan identified a ball by saying ball for Miss Erin. He now have five words!
While most of Ronan's days are full of struggle just to do the simple things like getting in his chair without falling over, or scooping his food without it spilling out of the spoon, Ronan is victorious in some manner. Each day he faces more challenges than I will ever know. Each day he teaches me and gives me a chance to learn more and do better than yesterday. He is helping me to overcome the pain of what if things had been different, why did this happen to you and why did it happen to me too. I may just want to blow things off but that little hero wrapped up in a seven year old's body keeps pushing me along. I can't wait to find out what we'll learn together tomorrow.


What's that expression?  The more things change, the more they stay the same.  Yeah, that one.  After reading that entry, I can see that some things are exactly the same - Ronan is still in therapy, he still requires loads of redirection, and he still has a very limited verbal vocabulary.  As much as I'd love to be able to share that Ronan is now eons ahead of where he was when I wrote that piece in 2010, he's not.  

His delayed speech is still delayed.  

His attention span is still short.  

His needs are still great.  

Those needs.  The intensity of them.  The struggles he faces.  The strain of helping him through the struggles.  That's all still here.  But so is my dedication to Ronan.  

Despite the lows, we do experience some highs.  Like at the park today, Ronan spent a few minutes kicking a soccer ball.  When he'd usually rather sit on a park bench and count down the minutes until we leave, he got up and played.  It lasted only a few minutes, but he was active and engaged, and we were delighted to witness it. 

Sometimes life does blow.  But other times, like yesterday, when the day was good and when we watched things come together, we saw moments of determination, of clarity, and of hope.  I love those kinds of moments.  They can be few and far between, but they are always a good reminder to never, ever give up.  

xo, Cat