JOY and HOPE

This past weekend we were invited by some friends to come for a ride on their new boat...that simple invitation gave me a wonderful gift: A Moment of True Joy. I decided to be a little adventurous which is NOT in my nature. I climbed in their three-seater innertube. Yancey on one side, Nancy Claire on the other and John Brady in the middle with me. And when I allowed myself to enjoy and not to focus on the fear of one of them flying out, I had a chance to tip my head back, feel the water and sun on my face, listen to their laughter and shouts of joy and PRAISE GOD for this moment, such a rare one....all three of my children within arms reach of myself (and each other) and truly enjoying something fun with not an ounce of irritation with one another. It was truly a gift.
And today I was brave enough to venture out with all three to the movie -- it's always a step of bravery -- who knows what might set John Brady off, overstimulate him, or stress him out to the point of running off in a crowd full of people. But I made it into the theater (just by the skin of my teeth mind you) and as we sat watching the previews of all the wonderful movies that are coming out this summer I had a sense of HOPE that I haven't had before. Don't misunderstand, I have always known that things would one day be better, a little easier, more enjoyable --- but today I felt a sense of Hope and Excitement because it feels like that "one day" is almost here. Even if something begins to set him off or overstimulates or stresses him, all of us will be better equipped to help him deal with it, and maybe even offset it before we get to that point. So a family trip to the movies won't seem like the idea of a lunatic....it will be a fun, spontaneous thing to do with each other! And I felt HOPE.....it's just around the corner, I can feel it!

Reality Bites

I remember that movie from oh, so long ago....and today is a day when my reality does bite a little....and so did John Brady.
We went this morning for his evaluation with the school board -- it's the evaluation where they determine whether he will need any special accomodations. I am not sure of the function of everyone in the room but I know there was an OT, a Speech Therapist, an Educational Specialist, and some sort of counselor/psychologist there.
But John Brady was not in the mood to perform today. In fact, he was in a pretty rotten mood----he decided he didn't even want to be in the same room with all of us and in trying to keep him in the room the battle began. The short version is that I ended up with a few bites, a few kicks, a few head butts, a busted lip, some broken glasses and a few choice words thrown towards pretty much everyone in the room. But eventually he performed the tasks they required.
I'd like to say the physical battle was the hardest part. But it wasn't. It was the dose of reality. The reality is my child WILL require special accomodations for his education. The reality is that though he is very bright he currently performs below expected for his cognitive abilities. The reality is that the stress of all those people wanting him to perform and not knowing if he could do what they were going to ask of him stressed him out to the point of hiding in a ball under a table. The reality is he's beginning to understand that in those situations everyone in the room IS talking about him as though he weren't there. The reality of it is in the Fall he is going to school that's not in our home and I am heartbroken over explaining that to him. I dont' want him to think we don't want him here with us doing school during the day; I don't want him to think he's going to school because he's been bad; I don't want him feel like he's failed or that I've failed him. But the reality is he probably will think or feel all of those things.
That was my dose of reality today. Reality Bites.

More Fun Than a Girl Ought To Have

Yes, there is never, EVER, a dull moment at the Nolan Household and the other day was no exception -- as my FB status updates indicated, it was a wild day, complete with goose eggs on the noggin and dog bites.....but that just goes with the territory. I guess I'd have to say that the most "enjoyable" -- if you must call it that -- time of the day was the fun we had with the shower! You see, John Brady is known for his water hose exploits....a couple of years ago he discovered fun with the water hose one afternoon in our back yard. Thankfully, at the time he was not able to turn on the water on his own, so we felt "safe". But shortly after that we were having dinner at some friends' home and all of our children were playing outside. They have the kind of water hose where you can leave the water turned on at the base and just press the sprayer to turn it on....you guessed it, John Brady realized this neat little factoid and went a little crazy -- however, their garage had some items that shouldn't get wet, including the 4 adults who were trying to get to the base to turn the water supply off! If I remember correctly, Yancey sr. ended up having to change clothes over there that night because he was a drowned rat......and that's what I was here the other night.

It's all fun and games til someone becomes a drowned rat!

I have often said that God makes those extra difficult children extra cute just to help them survive!! -- see it for yourself....

See what I mean.... who can resist that blue-eyed cuteness....

Yes, there are very long, hard days, days when everyone in our family pays a dear price for what we deal with. We've missed out on parties for our best friends, we've held back on outings as a family, we've left early from family functions because of meltdowns, we've searched through a very large church for a runaway John Brady, and the list goes on.

But, there are also such precious moments that are made even more special because they are more rare in our family than in most. We savor every time we get some unsolicited affection from John Brady, we treasure that he does have one friend that he really seems to like and play "with" and not "at", and when all three seem to be peaceful or truly playing and enjoying their siblings....it's a moment that makes a memory. Things many families take for granted, we know are things to treasure. And I wouldn't trade that for anything.

JOY and Pain

As part of my Mother's Day weekend, I spent some time alone at Restoration Park Saturday afternoon. I sat with my Bible, a devotional, my journal and my ipod and felt the precious breeze. As I was journaling the song "Never Let Go" by David Crowder came on my ipod and I could not help but journal the words "Joy and Pain, Sun and Rain, You're the same, You never let go".....And I had one of those Joy and Pain moments yesterday.
We went to my mom's house for "lunch" -- I only put quotation marks there because some don't consider eating at 3 PM "lunch"....but I digress....at the head of the dining table, where my daddy used to sit, there is a bay window that overlooks my mom's majestic back yard. That's where I sat yesterday and enjoyed my lunch -- and I do mean ENJOY: I enjoyed that I sat down and ate while Yancey fixed the kids'plates, I sat down and ate in PEACE, and was finished with my food before he sat down to eat...and the kids were SOOO good. After lunch, as the grown-ups had coffee and dessert (incredible lemon ice box pie if I do say so myself), the kids went out to play hide and seek. There were 6 cousins out in that yard...3 boys, 3 girls and as I sat and sipped my coffee I was ever so grateful that it had been a relatively peaceful day.....JOY. And then I realized as they all ran back to base, the fountain in the center of my mom's yard, there were only 5 of them playing hide and seek. And as I scanned the yard...pain. John Brady was walking along the bank of the bayou with his fishing net...for over an hour as the others ran and yelled and played behind him, he never even looked back at them. It was an odd moment for me, and lots of questions came into my mind. I don't remember a time before when they had all been playing like that and he hadn't joined in the fun at least to some degree. So why now? Why have some issues seemed to surface lately that haven't existed before....like auditory sensitivity? Could he be beginning to realize that playing with others doesn't come so easy and just doesn't want to bother with it, even with his cousins? Or should I have just enjoyed the moment of peace and not tried to focus on the "whys", at least for Mother's Day.
Joy and Pain, Sun and Rain, You're the same, You Never Let Go.....

Dioko --- Pressing On

I don't mean to say that I have already achieved these things or that I have already reached perfection. But I press on to possess that perfection for which Christ Jesus first possessed me. No, dear brothers and sisters, I have not achieved it, but I focus on this one thing: Forgetting the past and looking forward to what lies ahead, I press on to reach the end of the race and receive the heavenly prize for which God, through Christ Jesus, is calling us. Philippians 3:12-14

We really began this road/journey/race years ago, but our more recent course began before the Holidays. John Brady had been in a wonderful group for speech and occupational therapy. Two other boys with similar issues and needs for socialization skills spent two hours every Friday combining speech and occupational therapy. In the beginning, it was really going well for all three boys. But getting closer to the end of 2009, John Brady became very resistant even to going to the building for therapy. He became disruptive over the least little incident, and more often than not was removed from the group just to be controlled and allow the other boys to continue working. Shortly after Christmas it had escalated so that we all decided the best course of action was to stop the group setting for John Brady. At this point we also determined that we had reached a point where it was necessary to seek and receive an official diagnosis for John Brady. In the beginning, we thought we were just dealing with some simple developmental delays, so we felt that we may serve his future medical records better by keeping anything more specific off the charts. But we were at a point where we needed to know exactly what we were dealing with, how to go about treating it, and finding services that would best serve John Brady.
HA! Easier said than done.
I can remember asking for prayer because we thought our first and easiest course of action was to simply get a referral for a program in New Orleans. SCRATCH -- not the easiest thing. One of the main obstacles in January was that most programs treat children 2-5 or 6-12 --- and since John Brady was only going to be 5 for 3 more months, the 2-5 programs didn't want to waste their time; but the 6-12 programs didn't want to see him yet because he was too young. You honestly cannot imagine what it was like to be literally screaming for help for your child and have everyone just say, "Sorry. There's a black hole in the system and you fall into it." --- Unfortunately, that wouldn't be the last time we heard that either.
FINALLY, because a dear, precious friend was able to pull some strings so we could at the very least have an official evaluation, we began that process in mid-January. It took about 7 different appointments just for that evaluation. And in the end, we had an official diagnosis -- we were comfortable with it because we felt they were very thorough and took their time with us together, individually and John Brady with us and individually. And even though we had been expecting it, when Yancey received the report by fax at work and read it to me, I still felt sick to my stomach.
All those years ago when I had done all that initial research on Sensory Processing Disorder, I had become pretty familiar with Pervasive Developmental Disorders - The Autism Spectrum, and their different diagnosing criteria, etc. So I knew when he read it to me that we now had an official diagnosis of an Autism Spectrum Disorder. I remember suddenly feeling the need to be with my mom, but the best I could do at the time was call her. And then I had to collect myself, get everyone ready for church, and get out of the house (it was a Wednesday). Yancey brought the copy of the report to church and we sat and read it together. All those pieces had finally been put together, and as we sat and read, it was hard.
But we really had only reached a starting point -- and it was already mid-February.
Next, we received a phone call from the people who had done the evaluation. They wanted to meet with us. Basically to tell us that since his diagnosis was considered a developmental disability and they deal with mental health disorders, they couldn't help us.
So we were passed off, AGAIN.
Dioko - Pressing On
This time, though, we were blessed with diagnostic tests, reports, and official diagnoses. Something we hadn't had the month before.
I may not have mentioned yet that our children are on LaChip -- which is a huge blessing. John Brady's ASD isn't his only problem - he also has severely pronated and flat feet -- without his braces on he practically stands on his ankle bones. So he has to have orthotics -- which our private insurance at the time paid minimally to say the least. The one set we paid for before we signed up for LaChip was just paid off last month --- and that was 2 years ago! They're very expensive. So getting the kids on LaChip was a huge blessing even if all it ever paid for was his braces. (And if you imagine how quickly little boys' feet grow, you can imagine that one pair doesn't last a year!! We do good to get about six months out of them.)
But the down side is that Louisiana passed a law that requires private insurance companies to pay $39,000 per year for treatment related to Autism Spectrum Disorders. It's wonderful and actually progressive --- but Medicaid hasn't quite caught up. Lots of things are covered, but specific, targeted, intensive therapy isn't.
Medicaid may not provide, but God does.....and He will.....I have NO DOUBT.....so I press on to reach the end of the race He has called me to run.

Up To Date

One thing I forgot to do when we changed internet providers --- change information for my previous blog. Oh well, just have to start a new one.
Up to date: We have been on a journey of sorts in regards to John Brady since shortly before his second birthday. He wasn't talking, but we weren't real concerned -- considering he was born into a family already full of talkers, he probably just didn't "need" to talk. But our pediatrican wasn't going to let it go longer than 20 months, so when he still wasn't talking we began speech therapy. Shortly after his second birthday he said, "Mommy" for the first time. I can honestly say that I could find the date of Yancey Jr and Nancy Claire's first utterances of any form of Momma, but the memory of it isn't clearly etched into my mind. But that's not the case with John Brady....we had been working for a few months with a speech therapist when it happened. I still remember that he had indicated to her he wanted to go outside on the patio, so we opened the door and she carried him out. He turned around and pointed to me and she asked him, "Who is that, John Brady? Who else do you want to come outside?" And he looked at me and said it, "Mommy"......yep, when you wonder "if" they'll have words, you celebrate them much differently. And though there were typical speech issues, his vocabulary quickly expanded and as far as we could see it, we didn't have communication issues anymore.
But he began doing some other strange things, and had some other issues that concerned us. Individually they wouldn't amount to much, but when you put them altogether, especially now looking back, they were definitely significant. For instance, he was not just a picky eater....it went beyond that. There were foods that he would ONLY eat. I don't exaggerate when I say that months went by when the ONLY food he would eat were Oatmeal Creme Pies. Seriously. At that time his only words were "Mommy" "Eat" and "Pie"....so the poor child sat in a highchair eating Oatmeal pies all day long....it seemed to be the only way to keep him happy.
Then there were his "lotion" issues -- his favorite was Desitin, no, not Destin, Florida, Desitin diaper ointment. If he could get his hands on it, he smeared it all over his face and hands and arms. Sometimes his feet and legs, but rarely his torso. Often untimely, frequently frustrating, financially wasteful, and only funny in hindsight. If he was quiet, if you didn't have him in your view, you better worry. He must be into something.
We had to do a "baby-proof" like you've never seen the likes of.
Except, I forgot about under my sink in my bathroom area. The place where I stored all the tubes of red lipstick -- the ones that came as a Gift With Purchase, but the color I would never wear, but would never throw away for whatever reason. One day I did remember. Unfortunately, it was all over him, all in his hair, all on the carpet, the walls......I was so thankful that day for a Thermax.....I truly called my husband at work and said, "You better get on your knees right now and pray for your child!!"......I can laugh now, but I promise I was not laughing then.
So we began to wonder where the line of typical and atypical was drawn, and if we had crossed it.
And we would soon find out that we definitely fell on the "atypical" side of the line.
At that point, in addition to "developmental delay/speech delay", we were told that John Brady more than likely had "Sensory Processing Disorder". When we left that day, I can VERY clearly remember walking out of the building with a sick feeling but looking at my husband and saying: "At least they didn't tell us he has autism. That I couldn't handle." Yes, that's what I said. I won't ever forget it.
I also won't forget coming home to do some internet research on Sensory Processing Disorder. EVERY SINGLE article I read linked it to an Autism Spectrum Disorder. But there ARE people who have SPD that are not on the spectrum. And that's what I knew for John Brady.
I can even remember back then filling out online questionnaires and seeing their "diagnosis" as Pervasive Developmental Disorder, Not Otherwise Specified. That didn't mean anything to me then. Now I know that it's an Autism Spectrum Disorder, sometimes called atypical autism.
But as time passed, I did begin to suspect something else was going on besides Sensory Processing Disorder. There were so many times that I really suspected he would end up "on the spectrum", but his verbal skills always pushed that idea away.
Until last year when there was another assessment done and it was shown that though he has verbal skills, he lacks some necessary communication skills. You can't imagine what it feels like to be told that your child really has no empathy; that his emotions are 90% based on how something affects him, not on how anyone else feels. Or that he can't read anyone else's emotions -- to him there's little difference between excited, happy, angry, sad, frustrated, scared, worried, etc. He has two emotions he is able to act on or verbalize: Extreme Joy or Extreme Anger. So that was another kick in the stomach.
There were so many little things here, and there, that put together, and when finally put on paper and into ratios and scales and such, it came out just a few months ago with an official diagnosis: Pervasive Developmental Disorder, Not Otherwise Specified.
Okay, that's enough for tonight.....tomorrow I'll travel down the "road to diagnosis and help"....and since we're still traveling it......