Ahhh! I can feel my patience being refined like fine gold and deeply missing attendant care going on four out of five days. Yet, I can imagine that God often understands and thankfully his patience seems permanent, especially with me at times. My family and I feel very fortunate to have this service where we live and know there are many friends in other states with autistic children that are on waiting lists and if that is you, I pray that support will be able to shared so that being “on” constantly can get a bit of rest.
This autism diagnosis does not define our family,
but it sure does present a few extra challenges, or shall I say “opportunities”?
Sometimes, in life, we make the choices,
and sometimes the choices make us;
into growing and stretching (often not willingly),
as we journey down a path we never dreamed.
A journey oft begun with shock, then grief…
and then ever so gently can become a season of being before we start becoming (again).
There has come a point that we seemed to have graced that it is really not about “us” anymore, although we have felt that way, that no one really understands, or “gets it”. The embarrassment of the stares and the unasked for words don’t seem to bother me most of the most time anymore. Especially in the library, it can almost become a comical opportunity to have an inner chuckle if one lets it! I mean where else can one so easily get those looks and eye glances for free? It is most especially interesting for others to ask his name, and get no response at all, at least without a prompt from mom.
ASD EASTER MORNING AT CHURCH
Needless to say, we have made some steps forward this past week on spring break and had a few momentous meltdowns as well as a definitive memory. This Easter morning, there were exactly three meltdowns at church, the type where he arches his back drops to the floor and screams “eeee”. The same type we have been working on in ABA for two years now. There was also the time this morning he did not want to go into the sanctuary, and covered his ears cupping his hands … until a brief movie came on, and clapped with glee and signed “movie” and again “ee”. It was just moments after that he vocally screamed to not be dismissed to go down to the children’s classrooms (I think because he was hoping to see another movie), screamed loudly, and pulled my hair as we were walking across the front of church out the side door to go to the classroom. Another happened because he was told “no” and not able to rip an offering envelope into shreds.
DYING EGGS
However, on another note – he participated in egg dying today. He participated in egg dying today? He participated in egg dying today! Progress! He is 5.5 and I can boldly pronounce that the last few years, we have been left in tears trying to do this as a family. He only broke three eggs before the process of starting and actually tried to write “N” on the egg with the white wax marker that came with the kit! He also wanted to eat an egg! Rewind 4.5 years ago, and he had an egg allergy with eczema and GI issues, at least part of the reason for the all over eczema that looked like sandpaper and was usually tender behind his knees and wrists. He ate an egg! This is progress!
Well, the past few days, we also have what looks to have a similarity to “Noble” on the windowsill with my blue highlighter, boy is he quick!
A full bag of Terra chips poured all over the ottoman before anyone could reach him (he loves cause and effect). Shreds of paper, (yes, he also has a perseveration with tearing any type of paper the last few months) of DVD case package insert and I have paid for and taped more than a few library books recently. He tried to put three CD’s in the computer and running them all at the same time and we were wondering what that horrid sound was. Downloaded more spyware, and did a somersault on the trampoline. He did a somersault on the trampoline? Yes, a somersault on the trampoline! Progress! A non-stop stream of ongoing “HP” approximations carried on after seeing the HP box on church workday, even though it was filled with weeds. He perseverates on anything electronic, DVD’s, logos, and loves to spell and google Disney DVD logos, MGM logos, etc. and will watch with glee while holding the button for slow motion or repeating. He has always liked the beginning of movies and the end credits and would cry when the actual movie started. But, he was able to get his arms through a shirt with only help getting over his head! He also erased all of the data for the Wii games and reset and deleted who knows what on the controls again for the umpteenth time.
SPEECHLESS LAST SATURDAY
Yet, I will have to say, I was left SPEECHLESS last Saturday on spring break at Mom’s Organic Market. We were out of dishwasher detergent, so I went to purchase some. As my daughters and I were looking at which type to get and I holding his hand so that he didn’t bolt off, he began to do a dancing jig. I wasn’t paying much attention as we were trying to look at labels. When I finally did, he was making an approximation of “PP” which is a HUGE step forward! Then, I saw a puddle. Don’t ask me how I missed it or exactly how it happened, as he had a diaper on. There IT was, about 8 ounces of yellow liquid in the middle of the aisle and he was dancing in it and making the approximation of “PP”. What is a mom to say? We are diligently trying to get him to initiate communicating with us that he needs to go, and he did! I just never expected it like THIS! I quickly proceeded down the aisle to find a worker and politely and most gracefully explained that there was liquid on the isle that would need to be cleaned up with cleaner. This is what we have had several “toileting intensives, consisting of several ABA therapists for 8 hours at a time, and whole days at school dedicated to this. Yes, over break this year, we are now getting an approximation after the fact. Progress! He is initiating sharing with us! This initiation is a major milestone on the journey of hopeful independence in this area and we haven’t had as many “code browns” and sanitizer duty either as they are drastically decreasing! This is a success because while sitting with the Chief of Genetics, we were told that neurologically, it wasn’t “registering” as in the past it hasn’t bothered him to feel wet or have something stuck on his skin. Neurologically, something is happening!
NEW TREATMENTS WORKING!
We have been on a new treatment with his medical team to address a possible secondary disorder and from the clinical trials, the three-month time frame was the period to show progress if this would help. As of tomorrow, we are at the three-month time frame and have seen much more attempt at verbal approximations and this “neurological awakening” of sensing wetness or something on his skin, most of the time. He is also going on month two of specific compounded prescription supplements to address mitochondrial dysfunction (not disease), and are seeing an increase in receptive language (acting on what he hears) and some in joint attention (eye contact). In the past, I would try my absolute hardest to get him to look in the camera for a picture as he seemed “absent”. Instead he would play with a ball over and over, sit and not interact, throw cars instead of rolling them, crawl on uneven surfaces, had five diapers a day that were more than wetness, and still severe eczema behind his knees, under his chin, in the bends of his arms and wrists.
CHALLENGE… OR OPPORTUNITY?
So despite feeling a little “weary,” I rejoice. Is it a challenge, or an opportunity? It’s Easter. Is God glorified in our challenges if it hasn’t been brought to the cross? Is it just then, challenges? There are words described in the New Testament of Jesus being “not yet glorified” describing his humanity prior to the cross. Is it not beyond the cross, after having ascended to the Father that challenges then become an offering for Him to be glorified in each opportunity?
I rejoice at the fact that this is Resurrection Sunday and for having real hope and faith rather than hope in hope alone. I rejoice that even though my heart aches when I see neurotypical children his age interacting and communicating, that I can celebrate each step and find joy in that! I rejoice that there are other mothers walking the same path and it is such joy to hit “like” on their Facebook posts about someone else’s child in this ASD family making a new milestone or having a new experience for the first time, although hauntingly delayed, and such an opportunity to celebrate all the more!
Jesus said not to take thought for tomorrow, for each day has enough trouble of its own. I have begun to recently apply that as live each moment at a time fully and be fully engaged (as there is never a dull minute around here, especially with ASD)!
A GLIMPSE OF THE STORY IN AN INTERVIEW
Earlier this month, we were asked to share a glimpse of our story in an interview for Autism month, it is found here for mobile devices: http://www.youtube.com/watch?v=NZwoh0yOUUg or here: http://www.reuters.com/video/2014/04/03/new-report-suggests-as-many-as-one-in?videoId=303283592
We are choosing peace over closure on this journey,
are hopeful for the years of early and ongoing intervention,
which is often coupled with exhaustion for myself,
and know He holds the future for us all anyway.
Are there really any problems in daily life, or just opportunities in disguise? May hope surround you this Easter. May the author of hope be ever-present and near if that is your desire. I have hope. Not hope in hope itself, but in the One to who gives it. Hope to believe in the best for our precious little boy, whatever that may eventually look like. Until then, I will purposefully keep my eyes above the situation, above the “waves” and abound in His grace. I may fail, but He is Faithful. This song, I have played over and over recently, http://www.youtube.com/watch?v=dy9nwe9_xzw. It reminds me to keep my eyes upon Him, above the circumstances and situation, and it is there I feel surrounded and know He is with us on this ASD journey.
