We have answers!

Micah had an outrageous skin outbreak about two months ago.  My gut had been telling me that it had to be more than just eczema.  Granted, his eczema has always been worse than most cases but this was just different.  Skin really red, like a sun burn.  Extremely itchy.  Then peeling...scratching and dead skin falling everywhere.  Patches of red rash and areas of skin not affected...almost a lacy pattern.  He had broken out like this in the past and we were always told it was just eczema.  I was not willing to accept that answer any longer.

This picture is from a stock photo I found on the internet but this is what he looked like.  Does that look like eczema to you?

The dermatologist made a decision to do a skin biopsy.  He wanted to rule out two diseases - PRP (Pityriasis Rubra Pilaris) and Job's Disease (yes, like Job in the Bible).  It would take a week to get the results.

I did what every other human being with the internet does while waiting for results.  I Googled and self-diagnosed.  I also dug into the Word - the Book of Job specifically.
Job 7:4-5 shook me to the core as I saw my child within the words.  Job is talking with one of his friends about his struggles.  He says, "When I lie down I say, 'When shall I arise?' But the night is long, and I am full of tossing till the dawn.  My flesh is clothed with worms and dirt; my skin hardens, then breaks out afresh."
I shared the story of Job with Micah and read this particular passage to him.  Discovering that someone in the Bible had suffered with skin issues in the same way he had - in a strange way, it seemed to bring him peace.

Micah's biopsy results came back.  He indeed had both Eczema and PRP.  PRP is a rare skin disorder. It causes the skin cells to rapidly produce which causes the inflammation and peeling of the skin.  The cause of the disorder is not yet known.  The treatment for PRP is a medication called Methotrexate.  This medication causes the skin cells to slow down production.  It is not typically given to children as it can affect liver function and cause other rapidly producing cells (blood cells) to drop.  Micah would have his blood checked often to ensure his blood count does not decrease.  If it does he would have to come off the medication.

Micah has been on the medication for a month and a half.  We have seen an amazing improvement in his skin!  His skin is so smooth and clear.  Truly a miracle!

And guess what?  My mom found in some of the research about PRP that the disorder causes EXTREME EXHAUSTION because the body is working overtime to produce the skin cells.  It all makes sense!  Micah was sleeping so much because he was making skin!  Since he has been on the Methotrexate he has only slept in class once!  His teacher says it is like she is teaching a completely different child!

God answers prayers - we just have to be faithful!

battles vs. war

The past two weeks have been rough. And I have the battle scars to prove it.

Micah has been sleeping more and more at school. The teacher feels that sometimes it is to avoid the task at hand. Other times she believes he's so tired he just can't help it. Micah does not get quality sleep because of eczema. Some nights are worse than others. He constantly scratches and claws his skin, even though I slather him up with lotion and topical medication. The doctor prescribed hydroxyzine to help with the itch at night. Micah says that he sleeps in class because of the medicine. So. Damned if you do, damned if you don't.

Last Thursday the school called to tell me Micah was sleeping. They allowed him to take a 30 minute nap. They woke him and directed him to class but he got angry and threw a laptop on the floor. Thank goodness it was an older laptop and it didn't break. Regardless, he got suspended. When I walked into the classroom to pick him up he was lying on the cold tile floor, shirt over his head...sleeping. I mean a hard sleep. You know when someone wakes you up and you are so dead asleep that you get that "where the heck am I" feeling?

I was so infuriated with him over getting suspended. I mean, it is really hard to get suspended from alternative school, right? I had all kinds of retribution brewing in my head on the way home. He begged me all the way home to let him just sleep. I stood my ground. He was going to receive discipline. By the time we pulled in the driveway he was in tears. "Please momma, just let me sleep for a little while", he sobbed. I gave in.

He slept for 6 hours! He got up for 2 hours...he slept for another 9 hours! This was after sleeping the night before and the majority of the morning at school. Something is not right with this picture. Off to the psychiatrist, pediatrician, therapist and possibly sleep doctor in search of an answer to this mystery.

So...suspension. Then allergy shots. Oh, by the way...Micah did receive retribution for throwing the laptop. We started his allergy shots on the day he was suspended. No, that was not the retribution! Well, maybe for me it was but I figured I might as well make the most of the involuntary day off from work.

We tried allergy shots a few years ago. It was such a battle to get them done each week that we gave up. At the time, we had just gotten his diagnosis and had much bigger issues at hand. Micah put on a brave face going in but as soon as he got back to the nurse he freaked. We danced around and played the game for about 15 minutes. The nurse was growing annoyed and there were other patients waiting for their shots. I turned loose of my flip flops, wrestled him to the ground and restrained while the nurse did the shots. He screamed bloody murder! "Momma, why are you forcing me to do this? I'm not ready! Let me go!" The other nurses and patients in the back stared and whispered. As I turned him loose and got to my feet I realized I was breathing heavy and sweating a little. He's a thick, fiesty little booger! The nurse said, "momma, you gonna be ok?" "Yep. Not my first rodeo." Now I remember the reason we stopped! I can say that the second week - walked right in...took those shots like a boss!

We let the boys stay up a late to watch a movie with us. Micah freaked on me when it was time to go to bed. He was relentless about wanting to sleep with Richard and I. In hindsight, I should have given up the battle and allowed it. At the time, I stood my ground because he had been in our bed every night for the past two - three weeks! We were both of the verge of needing chiropractic intervention!

The arguing escalated quickly and turned physical. He kept pushing and screaming. If anyone in the house was sleeping, they weren't now! I told him that if he kept kicking and pushing me I would have to restrain him. He continued on so I moved him to the floor. He kicked, head bucked, bit, screamed. He called me a "fat, fucking sumo wrestler" and a "douchbag". (side note: I had a very frank discussion with him a few days later about what this word meant. Yeah, probably not gonna use that word again)

It breaks my heart when this happens. I hate watching my child fight this inner battle. I feel guilt - if I had just given in and let him sleep with us he wouldn't have escalated to this point. The enemy tries to take residence in my brain - telling me I am a failure of a mother. After about 30 minutes of a hard fight he breaks. This allows me to break too. I let go of this monster I don't even recognize and take my sobbing child into my arms. We sit on the floor together, rocking, and we pray. We pray boldly and I feel God's presence folding us into the cover of his feathers. Under his wings we find refuge. (Psalm 91:4)

I lay Micah in his bed and leave the nightmare of the past week as if it never really happened. Psalm 91:4 ends by saying: His faithful promises are your armor and protection. The battles are not over. Dare I say there will be many more to come in this child's life. But - God promises us protection during these scary times. There will be victory in Micah's life - of that I am sure!

There's No Crying in Baseball

I am a cry baby. I am. I cry…a lot. I am the girl who cries at weddings and sappy, sad movies. I boo hoo during The Notebook. I cry when my feelings get hurt or when I am overwhelmed with joy. I cry about injustice in the world. I cry when I am missing a friend and also when I see that friend again after a long time. I celebrate victory if I make it through a meeting with my boss without tears. I cry when I am angry. I make it about a block down the road after saying goodbye to my family. I even cry at those stupid Publix and Folgers commercials at the holidays. Damn commercials! Today, I cried at a pee-wee baseball game. I know what you are thinking – “There’s no crying in baseball”. But cry baby over here…cried. The tears came for two reasons. It was Noah’s first baseball game. He looked so cute, yet so grown up in his uniform and batting helmet. I envisioned the years to come that will spent in the bleachers, through rain and cold, cheering his team on to victory. He was so proud of himself and I was so proud for him. Noah always gets the short end of the stick. Our world revolves around Micah and his needs. Noah waits patiently, always in the shadows of his older brother – waiting for his moment to shine. Today was the day! Micah - the other source of my tears. Tears of frustration and embarrassment. Tears of defeat and longing for a different set of circumstances. I picked the boys up from school with only minutes to get Noah to the ball field. (Why make parents get children to a game by 5:00pm? Doesn’t anyone work these days?) Micah begged me to take him home first. I explained that I had to get Noah to the game. I knew he did not want to go. In the back of my mind I knew it was a bad idea to take him. I rationalized – he has been doing so well and it has been so long since he has acted out in public. He could make it through one game. It would mean so much to Noah to have him there, cheering for him. As soon as we made it to the bleachers it began. I am not sure why it took me by surprise. Didn’t I remember the chaos that ensued at the soccer field? The screeching rants. “THIS IS SO STUPID! I WANT TO GO HOME! THIS SUCKS, WHY DO WE HAVE TO BE HERE???” I guess it shocked me because it had been so long since he has had a public meltdown. As I try to process what went wrong tonight I realize the reason there has not been a meltdown recently is because we have not pushed Micah out of his comfort zone. There is peace as long as he feels safe and can remain in his own little world. We have not pushed interaction and participation with other children at church and small group. We have allowed him to retreat to the bedroom to watch Minecraft videos and listen to music instead pushing him to interact with the family. The push into the unknown tonight sent him over the edge. There was screaming, cussing, flying of fists, biting, and clawing. I saw the stares and I heard the whispers. It was quite the show. I calmly said “Stop”. I physically restrained, bobbed and weaved, and removed fingernails from my skin. I reassured him that when daddy arrived we could go sit in the car. I rubbed his back and applied deep pressure. I prayed. I felt completely powerless in the moment. All of the confidence I had built up over the last year, the tough “Autism mom” armor I adorned was destroyed during this battle of wills. The façade gave way to tears. Several months ago my tears would have brought on more rage from Micah. Tonight, my tears were a gateway to his sobbing - and surprisingly, remorse. Remorse! This is HUGE! Score one for team Micah! Micah was able to pull it together and so was I. We enjoyed the game. He cheered for Noah. Noah was up to bat and Micah yelled to him, “You just have to swing when the ball comes toward you.” For the first time Micah was able to show support to his brother. We have a lot more games in our future. I pray that Micah will be able to come out of his world for long enough to return the support that Noah gives him on a daily basis. Hopefully, if there is anymore crying in baseball from this momma they will be tears of pride and joy. Side note: Noah’s team won and we celebrated with ice cream.

Nothing complicated about it....

It has been about six months since we have consistently gone to church. It just got too hard. We went to a wonderful church with wonderful people but it ended up just not being right for us. The church even had a special needs program. I don’t know what it was that caused Micah anxiety but he fought us kicking and screaming every Sunday. When we were able to get in the doors of the church he would refuse to go into the children’s program and then fall asleep during the church service. After several Sundays of begging, pleading, screaming, sweating….just to get the kids dressed and in the car –  you know the deal - “WE ARE GOING TO CHURCH AND PRETEND WE ARE A NORMAL FAMILY AND YOU ARE GOING TO LIKE IT”. It was exhausting. So…we gave up.


The longer we didn’t go, the easier it was to just not go. A friend of mine is on staff at a church in Pennsylvania and they have an online sermon. So, we hooked the Nook up to the tv and started watching every Sunday. (www.lcbcchurch.com/media - check it out!) I got so much out of the sermons but there was something missing. I missed connection and worship with other believers. I knew we had to get back into church…but where? The one thing I really love about LCBC (Lives Changed By Christ) is their premise of “Love God, Love People”. How uncomplicated. “God, I want a church like that for my family.”

We started visiting different churches. I felt like Goldilocks. This one was too traditional. The next - too big. Too snobby. Too many rules - spoke and unspoken.  As I was stalking Facebook one day I noticed that a friend was “checked in” at Simple Church. What in the world was Simple Church? Out of all the millions of churches in Rome I had never heard of Simple Church. It was a fairly new church and come to find out – very close to our house. We decided to check it out.

That was a little over a month ago. Simple Church felt like home from the moment we walked through the door. There were no complaints (or sleeping) from Micah – which is a very high compliment. The whole family has been eager to go to church each Sunday – no begging or screaming. When I think about it, I am amazed at what God has done with our family over the last month.

The second week at Simple Church Noah was baptized. He had been baptized as a baby but wanted to be baptized again since he had made a decision to give his life to the Lord. The third week (Mother’s Day), Micah gave his life to Jesus. This was the best Mother’s Day present I could have ever received! The assurance that both of my children would be with me in heaven!

In all honesty, I worried that Micah would never be able to understand the abstract concept of faith. A relationship with someone who he could not see…talking with someone who he could not (audibly) hear talking back to him. It’s hard enough for him to connect with people. In his aggressive meltdowns, he would often curse God and voice his allegiance to the devil. He would sob – questioning why God would make him suffer with eczema and autism. Some of the awful things he would say was said to hurt us. But I think he was really wrestling with God. We would pray with him and he would be distant, non-believing that God truly loved him and wanted a relationship with him. We would tell him that he could push God away and say whatever he wanted in his anger but God would never stop pursuing him.

Mother’s Day Sunday Micah took the communication card out of my hand during the singing. He checked the box “Today I gave my life to the Lord” and he showed me. I told him to put his name down next to it. Then Richard took him over to talk and pray with the pastor. Micah wanted Richard to do the talking for him. Richard told him, “Buddy, this is all you. If you want this you have to be the one to tell him.” Micah said three words that changed his life – “I want Jesus”. It was that simple.

Micah’s struggles have not disappeared but he is more at peace…happier than I have ever seen him. The Holy Spirit can comfort him in a way that Richard and I aren’t able. I am not sure what turned things around for Micah but I sure am thankful for answered prayer. Maybe Micah realized that a relationship with Jesus doesn’t have to be complicated. He asks us to follow him, to love God, and to love people. Not complicated….Simple.

Connections and Consequences

The first time I heard the word “Aspergers” I was listening to a news clip on the radio. The story was about two middle school girls who had fed cake laced with glue, Tabasco sauce and modeling clay to classmates. The students became ill and the girls were charged with 12 counts of aggravated assault and intent to commit murder. The father of one of the girls came forward and said he felt like his daughter’s diagnosis of Aspergers may have played a role in the incident. At the time, I remember thinking that was the most insane thing I had ever heard. This dad was obviously trying to make excuses for his daughter’s behavior.

I then read the following piece of commentary on news program following the story:

Sheila Wagner, the assistant director of Emory University's Autism Center stated that “Children with Asperger’s Syndrome must have IQs that fall within the average to the above average range, so these are children that have a lot of capabilities, but they often have many social difficulties and behavior problems. They do not have the same amount of social skills, she added. They're very immature, often times very socially naive, socially vulnerable to others out there and their influences.” Asked if it could have played a role in the incident, she said, “The connection would be in just not understanding the consequences of an incident like this.”

The girl's charges were reduced and they were sentenced to probation.  I wonder if they learned their lesson.

This story resonates within me as I think about the series of unfortunate events occurring in our homestead as of late. Micah’s impulse control is at an all time low. He expects instant gratification with everything. If it does not occur right when he thinks it should then “all hell breaks loose”. Honestly, hell hath no fury like an ASD child who does not get what they want!

A recent example of this was his birthday money. Remember, the money he wanted to spend immediately at the Dollar Tree? We explained to him that he will likely get more money at his party. Then he can put all the money together and get something much better than a dollar store item. But…OH NO! He threw such a fit! Guess what? He racked up $50 at his party. He was able to go to Walmart and get a really cool Star Wars light saber. “See Micah, wasn’t it better to get this cool light saber than some dollar store toy?” “Yeah.” What will happen the next time? He’ll throw the same fit.

Don’t get me wrong. I really am not worried about that type of impulse control. I can brace myself for those moments and weather the storm.  I hope his lack of restraint may improve as he ages. What has me losing sleep is the lengths at which he has been going to get what he wants, when he wants it. I fear he is headed down a path that screams INCARCERATION and I don’t know how we are going to stop it.

It all started when he was four years old and we went to Kohl’s Department store to get my husband a pair of pants. We told the boys the reason for our shopping trip before we went into the store and emphasized that we would not be buying them anything. As we ventured towards the men’s section, Micah spotted a t-shirt with a huge monster truck toy attached to the hanger. [Dear marketing department: DO NOT PUT STUPID PLASTIC TOYS ON T-SHIRTS JUST SO MY KID WILL WANT IT] We told him no and continued to head in the direction of men’s pants. That was when our sweet four year old took off. We looked under all the racks of clothing, yelled for him, got store security involved. He was no-where to be found. Rich and Noah went to the car as I frantically continued the child hunt with store security. My panic elevated as did my blood pressure. My phone rang and when I answered it I heard my husband say “He’s out here. He’s at the car and he has the shirt.” So….what you are telling me is that my four year old snatched the shirt, made it past the few lanes of cashiers and ran across the parking lot to our minivan? Yep, that sure is what he did. He was determined that he was going to own that shirt. In case you are curious, he did not succeed.

The stealing has become more sophisticated as he has gotten older and more technologically savvy. This child knows more about computers, hacking and password/code breaking than I ever care to know. A few months ago, he downloaded $75 of Microsoft points on the Xbox. We thought we solved the problem by password protecting the game system. This past weekend I woke up at 4:30am to find him at the computer, my wallet in tow, trying to buy the computer version of Minecraft! [Guess what he was going to get for his birthday present that night? Guess what he didn’t get for his birthday present that night?] My husband got an email that same morning from Paypal notifying him that someone tried to change his Paypal password at 3:39am. This morning I find him in the living room at 6:30am playing the Xbox (which he was grounded from) and later find out that he used my credit card to order Xbox Live. I ask him, “Why would you order Xbox Live when we already have it?” He says, “Because I couldn’t get on our Xbox Live profile (oh yeah…password protected) so I created a new profile and ordered it for that profile.”

I know some of you are thinking I am being overly dramatic (HA, me be dramatic?) and maybe I am. I try to be light hearted about it – joking to others, “My son is either going to make us a lot of money when he grows up or be in a lot of trouble”. But deep within I fear what consequences life may hold for my precious boy.  (I don't think the other inmates will find his portrayal of a kitty cat as amusing as we do)  Is it really  stealing since it is just from his parents?  I think so.  What happens if we ignore it or make light of it - when will his scope broaden?  A lot of praying going on in this head and heart of mine. I know some think that we have not disciplined enough over the years or that we have spoiled him. Maybe these things are true. I have never pretended to be a good parent. If anything I question why God has given me (queen of inconsistency - who flies by the seat of her pants) a child who requires so much structure and consistency.

Children his age may argue or become angry when told “no” or “not right now”. They may retort “that’s not fair”. But eventually they accept what is being told to them and concede. When Micah reacts to these disappointments – his primal, caveman comes out. “Me…want…Me….take. Me….angry…me…punch you in the face.” He then takes matters into his own hands – does whatever it takes to end the struggle, the craving, the impulse. No regard with what happens next. He does not and possibly cannot make the connection between his actions and the consequence of his actions. He is currently on a strict chore schedule to pay back the money he owes us. We have considered taking him to see the Juvenile Court Judge, a tour of the local jail, talking with police. We have considered hiding purses and wallets each night, an alarm on his door, a fingerprint recognition for the computer. I honestly do not know that any of these will make him think twice about stealing the next time.

Ignacio Estrada said “If a child can’t learn the way we teach, maybe we should teach the way they learn”. I could not agree more with this statement, but I am at a loss of how to get my child to learn this crucial life lesson.

Note: Sheila Wagner was also quoted as saying “the act of one child should not be the image people have of this [Aspergers] syndrome. I would hate to think everyone would think that all individuals with Asperger's are capable of something like this because it's just not true.” I want to stress that I am not generalizing Micah’s behavior or any deviant behavior as a norm of Autism Spectrum Disorder.

Celebration of Life and What Dreams May Come

"We must let go of the life we have planned, so as to accept the one that is waiting for us"

-- Joseph Campbell

Tomorrow is Micah's 9th birthday.  We had a birthday dinner with Rich's side of the family on Sunday.  He got an awesome Minecraft Cake!  Tomorrow I will be taking cupcakes for his class.  Saturday he and his cousin will have a co-birthday at the bowling alley with friends from school.

We had an issue today when his Great-grandfather send him a card and five dollars.  I don't know when we will learn to be more strategic with things like this.  As soon as he opened it, he wanted to go to the Dollar Tree and spend it.  No amount of convincing could make him understand that the most logical thing to do would be to save it until the weekend to see if he got any other money.  Then he could put the money together and buy something better than a $1.00 toy or 5 $1.00 toys that would be broken in a few short days.  The meltdown lasted about a half an hour - lots of "you don't care about my birthday" and "you just want to torture me".  Lots of hitting himself on the head and throwing rocks at my head.  (We were trying to take a nice family walk at the lake)  Needless to say it turned into a fiasco!  I was able to get the $5 back in my possession during one of his diva moments where he threw the money in the lake.  I was able to fish it out and put the soggy mess in my pocket (all without falling in - that is impressive, knowing my klutzy nature).

So far his birthday celebration has had some ups and downs but tonight I am struggling with something much deeper than cake and balloons.  My child is about to be 9.  His grandparents have asked me what they should get for him.  I'd really like for them to give him something that is not tangible and won't break in a couple weeks to a month.  But, bottom line: I just don't know.  At 9, most kids are involved in something - church group, sports, Cub Scouts, music lessions....

Micah's main interest, dare I say only interest, is in electronics/video games.  If it has a controller or buttons to push and he can be in control - that is what he wants to be doing.  I am having a real issue with this.  I know that video games are a typical male interest, but it is not usually their only obssession.  I worry that if we don't find him a broader range of interests he will continue down a narrow path of isolation. I know that he has a creative side in him and like others in my family, including myself this is a way to release and find solace within. The hard part is figuring out his mode of creativity.

I have mentioned several ideas to my parents of "out of the box" gifts that they could give him.  Guitar lessons, gymnastics, Kung Fu, art lessons, lego camp.  They said they are willing to do whatever we want.  The problem is that we can't decide on anything.  Don't get me wrong, I have no irrational dreams of this sweet child ever playing a sport.  He made it clear early on that he had no desire.  (My other child can't wait to put a helmet on and a ball in his hands)  I just draw such a blank when it comes to Micah.  When we talk through each idea there are always barriers - what if he hates it and we have wasted the money.  What if he gets mad at the instructor and throws the guitar and breaks it.  What if Kung Fu back fires and he uses it in ways that are contradictory from that which it is intended.  There are risks associated with any of these ideas but should that mean we never try them? 

I just want to find a way to bring him more joy.  But maybe my struggle is in trying to create a future for him that does not and potentially, will not ever exist.  Maybe the road he chooses to walk cannot be easily explored within a functioning extra-curricular.  This is just not where I thought we would be with him at 9 years old.  A friend of mine once told me that I may have to dream a different kind of dream for Micah, given his challenges.  I believe that is true.  However, believing it and being able to let go enough to do it - two different things.

When asked what he wanted for his birthday he did say "I want to go to Atlantis" - you know, the all inclusive vacation destination.  Yeah, me too buddy.  Me too.  I guess that is a dream we can both share!



Happy Birthday Micahboo!  We love the snot out of you!
Whatever path you choose - we will support every step,
although you may have to tell your momma to not be so controlling!





Perspective and Prayer

Micah had his first appointment with his new therapist today and although he made me stay in with him I think it went fairly well.  She is different from the last therapist in that she is going to make him talk.  I am sure this will annoy him to no end, but fingers crossed that she will make progress with him. 

After the appointment we had a little time to kill so he talked me into going to the pet store. We looked at the fish, snakes (shudder), spiders (double shudder), lizards, guinea pigs, hamsters, cats and dogs. They even let him play with one of the puppies. He begged for a puppy or a hamster. He teetered on the verge of meltdown. I promised we would come back after every therapy session and that seemed to suffice.  

Oh how this helped his heart! He loves animals so much more than humans. :)  I wish we could find him a little job helping at a pet store or dog kennel or the animal shelter.  Maybe when he gets older.

We then went to see his dermatologist.  He had a flare up of his eczema a few weeks ago and had to go on an oral steroid.  His skin was good for a couple of days after ending the steroid. 
Sunday we noticed a few bumps.  Some looked like bug bites while others were more concerning.  Monday night he was itching and picking like crazy.  The bumps were multiplying and several were puss-filled.  It was insane how quickly they became infected.  Thank goodness we had the follow up with the dermatologist today.  She did a skin culture - could be strep, could be MRSA - won't know for a week. 

We left with more prescriptions - topical steroids, topical antibiotics and a suggestion of going back to the allergist for allergy shots (been there, did that, did not get the t-shirt - we quit before they told us not to come back!).  Now that he is a couple of years older we may attempt allergy shots again.  He balked at her when she mentioned them but I explained that it would help the eczema and better his chances of owning a cat when he gets older.  That raised an eyebrow....so we will see.

I fully intended to write a lengthy blog post tonight - about all of the stupid medications and doctor's appointments, the fact that CVS is the only place in town that knows me by name, my mounting prescription bill each month....Moan that it takes an hour to lather Micah down with all of his lotions and potions, which by the way, goes over about the same as giving a cat a bath. 

That is what I intended....I was annoyed and tired and wanted everyone to be fully aware of how over it I am!

                                                                         BUT

then I sat down to catch up on facebook and read this:

http://jakesfightagainstewingssarcoma.blogspot.com/2013/04/jadedtired.html

and I saw this:



My sweet cousin Jake - starting 9th chemo treatment today!

My perspective shifted.  Ya know what?  Eczema is irritating.  CANCER ABSOLUTELY SUCKS! 

Jake is an amazing kiddo who has superhero parents!  I hope you will join with me in lifting Jake and his family up in prayer.

We have lift off

Micah has been at his new school for a week.  He was supposed to take the bus to the school on the first day, which caused me to be a nervous wreck.  A new school and a new experience of riding a bus!  I ended up taking him to school that first morning because the bus did not come.  I found out later that the bus was just running late.  God's mercies that morning were probably more for me than him.  He probably would have been just fine - stepping off a brand new mode of transportation into a whole new learning environment.  Probably....but, given how he reacted when we got to the school  - probably not.

Anxiety set in as we pulled up.  He cussed, kicked, cried.  I pulled, persuaded, prayed.  The teacher worked hard to encourage him into the building.  I reminded him of the message our Pastor shared the day before from Isaiah 41:10 "So don't be afraid.  I am here, with you; don't be dismayed, for I am your God.  I will strengthen you, help you.  I am here with My right hand to make right and to hold you up."  (The Voice)  Micah screamed, "I know...but I still don't want to go!"  It must have been divine intervention because somehow I got him to go inside.  He sat on my lap and as the teacher talked

about bugs and teeth and donuts his grip on my arm loosened.  I slipped out the door and repeated the Isaiah 41:10 mantra for the rest of the day.

Micah rode the bus back to his home school for after-school care.  It must have gone well because I did not get a call.  He met me at the door that evening and the first words out of his mouth were, "AWESOME DAY!"  An awesome first day and five other equally impressive days.  Day two the kiddo boarded the school bus like a pro.  He made a friend.  He has been telling us about what he is learning about.  He has been smiling and laughing. 

I almost feel guilty about being apprehensive about sending him.  This has been what he needs.  I pray this winning streak continues. I do not know if he loves school now or if even likes it.  I CAN say with confidence that he does not HATE school anymore. 

An unexpected gift

"They" say that you always take more pictures of your first child than your second.  "They" say that with each additional child the number of individual pictures of subsequent children dwindle.  The problem was that I had zero (0) baby pictures of Noah.  Our computer crashed several years ago and we lost everything.  At least we thought we had.  When Richard was able to restore the computer I made sure to save all of the pictures to a SD card.  At least I thought I had  until I went looking for it.

About a year ago Micah, Noah and I were looking at a photo album filled with Micah's baby pictures.  Noah asked where he was in the pictures and I responded, "you weren't born yet."  When we finished looking at the album Noah asked to look through his album.  I had to tell him that I didn't know where his pictures were.  He burst into tears and told me I didn't love him.  Ouch!  I have been racking my brain since that day, trying to figure out what I did with that SD card.

Today I went on my Snapfish account (which I have not used in a very long time) to start a project.  Once I figured out my old password and logged on I could not believe my eyes!  There in front of me were all of the pictures from our old computer, including and most importantly, Noah's baby pictures!  I guess I uploaded them all instead of saving them to a card.  I spent a couple of hours looking through them, sharing them with Noah - smiling, laughing and remembering.

My memories of their childhood are so fuzzy, especially Noah's.  He often asks me to tell him stories of when he was a baby.  Why can I only remember a few big moments?  Things went by so fast.  I was so depressed and overwhelmed.  I was trying to be a mom, a wife, work a stressful job.  I spent way too much time re-hashing mistakes I had made in the past and worrying about the unknowns of the future.  I have spent many a night demanding my brain to remember!  Hating myself for letting that precious time slip  through my fingers and wishing like hell I could go back and re-live it all. 

Looking at those pictures today, I could not get over how beautiful he was!  (still is)  He was such a rolly polly with the biggest chipmunk cheeks!  In those pictures I can see his personality today - his peaceful soul, his forgiving spirit, his hiliarious sense of humor. 

Today, I was given a gift.  

You take the Good, You Take the Bad

Two weeks ago Micah had an awful weekend.  It was a warzone at our house.  We were all on tip toes, hoping not to step on a land mine.  I have no idea what set him into this tailspin.  Friday night he melted down so badly that I had to physically restrain him.  He clawed at me, tried to bite me several times, called me every name in the book.  He told me that he wanted to rip my heart out.  Rich was able to calm him enough to get him in the bed.  He then scratched his ezcema to the point he was bleeding.  He said he wished he could get the blood out so he could die.  Rich and I tried to comfort him and calm him but whatever was raging inside him needed time to be unleashed.  Around midnight he slept soundly.  I dragged myself to bed, cried and begged God show us how to help our sweet boy.

Saturday morning started with a bang.  By noon he had lost every priviledge - the Xbox, the Nook, the computer.  The only leverage I had left was an afternoon play date with his friend.  It was obvious that he wanted to go and there was no doubt that we needed the break from him.  I just worried about how he would act once he was at their home. 

I know it sounds awful to say that we needed a break from our own son.  I feel guilty for thinking it, saying it, typing it.  But guilt does not make it less true.  Richard and I rarely go out without the children or spend alone time with Noah.  I could not have been more thankful for his invitation to a friend's house. 

Noah was VERY upset that he could not go with Micah to the friend's house.  When we told him that we wanted to spend some alone time with him, he cried and said it was going to be the "worst day ever".  We went to Party City, mattress shopping, bowling and out to dinner at The Olive Garden.  It was so much fun to give Noah some undivided attention.  Life usually revolves around Micah and his needs.  Noah gets the short end of the stick so to be able to hear him say "that was the BEST DAY EVER" at the end of our parent/child date made my heart sing!

Sunday afternoon Micah had another meltdown.  Instead of restraining, Richard suggested we try what is call the Burrito.  We took his large blanket and wrapped him up like a burrito.  It is similar to swaddling a baby.  This actually calmed him pretty quickly.  We laid him in the bed and after a few minutes of flailing around he fell asleep. 

We have been talking with his therapist about different techniques to get him calm.  One suggestion is a weighted vest or blanket.  My mom is looking into making him the blanket.  The pressure provides the sensory input that the body needs.  The blanket works along the same lines as the "squeeze machine" that Temple Grandin designed.  http://www.grandin.com/inc/squeeze.html

Side note: Temple Grandin is a fascinating woman!  To learn more about her - http://www.templegrandin.com/ ; http://www.youtube.com/watch?v=cpkN0JdXRpM (movie trailer)

My cousin, Heather Crandall, sent me the following from a friend of hers who made one of these weighted blankets.

I have been working on a sewing project on and off for the last 3 weeks. I volunteered my lame sewing skills to her and got into something way over my head.


I made a twin size weighted blanket, some of you might know what that is; for children who fall under the Autism Spectrum Disorder sensory issues can be a problem and having weighted things on them helps desensitize.

The blanket is for a young boy with autism and likes pressure on his skin. It is very large, 7 vertical columns by 11 horizontal rows each filled with 1.5 ounces of pellets.

As you can imagine as the blanket was getting filled it was heavier and heavier and my lines were all over the place. I was getting frustrated and all kept thinking about As you can imagine as the blanket was getting filled it was heavier and heavier and my lines were all over the place. I was getting frustrated and all kept thinking about was the frustration this little boy must have. Think about having language in your head that just can't be expressed. Think about being suspended for behaviors he to lack of communication skills and frustration. Think about never going out to dinner because you can't find a baby sitter because no want dot watch your kid. Think about your own family uncomfortable with you visiting because THEY don't have the skills to deal with your hold nor do they care to acquire them. Think about fighting or the same education rights for your child that every other student gets automatically .... I can go on and on. As the blanket get heavier I kept thinking of the sacrifices families of ASD children make. I became more and more determined to finish. It isn't perfect, them lines aren't straight and the boxes aren't even but the finished product will bring joy to one special little boy. (Joann Weil)

I am so thankful for Ms. Weil's insights and for my cousin sharing it with me.  We have not yet found the solution to crazy days like these but we will not stop trying.  These days definitely make me thankful for the good ones.  The days when Micah is able to clearly communicate this feelings, there is a smile on his face and light in his eyes.  I hold onto those days like a life raft, believing that God will have the victory in Micah's life!

School changes

I will never forget the first IEP (Individualized Education Plan) meeting we had with the school after receiving Micah’s diagnosis. We handed them the documentation from his psychological evaluation. We told them about the referral our pediatrician made with the Autism Clinic at the Children’s Healthcare of Atlanta and promised to make them a copy of any records we received. The tone of the meeting shifted, softened. For the first time since entering that school, my child was no longer considered the “bad kid”. He took on this different label but somehow it seemed to shed light on the behaviors that baffled them for so long. I know that for us, as his parents, life finally started making sense.


We warned Micah’s kindergarten teacher at kindergarten round up. She said, “I’ve been teaching kindergarten for 20 years – there is nothing that I haven’t dealt with”. She was singing a different tune by Back to School Night. “I’ve been teaching school for 20 years and I have NEVER dealt with anything like him.” THANKS! I WILL TAKE THAT AS A HUGE COMPLIMENT!!!! We knew Micah was different but we also knew that he wasn’t this horrible kid the school was making him out to be. The principal would insist that he get out of the car when we pulled up to the curb. She would open the door and boisterously bellow “GOOD MORNING MICAH! COME ON, GET OUT, LET’S MAKE IT A GREAT DAY”. Her intentions were good but she interpreted his refusal to exit the car as an act of defiance. We saw a frightened little boy in the back seat, wearing his winter coat in April with the hood tight around his head who was reeling by the pitch and volume of her voice and the abrupt manner with which she dealt with him. I did not have a stellar kindergarten experience myself so I made my husband tell the principal about the trauma she was causing Micah every morning. I would like to believe that Micah (and one other wonderful little guy with autism who had the same reaction with her) is the reason she no longer handles the car rider line in the morning. 

The school told us that they would need to do their own testing. They could not take the documentation we had received from mental health and medical professionals and make changes to Micah’s IEP based on said documentation. So over the past several months Micah has had a psychological evaluation done by a school psychologist. Tuesday we met with the school and received two pieces of news that threw us into a tailspin.

The school recommended that Micah be referred for a special education program called GNET (Georgia Network for Educational and Therapeutic Supports). I figured this was coming. His teachers have been dangling at the end of their ropes with him. He is either sleeping in class or having a meltdown. This program would place Micah in a classroom setting with 6-8 children, grades K-5th grade. The classroom would have one teacher and one or two parapro teachers. They teach academics in the morning and social skills in the afternoon.

I wish I could say that my first thought was about how great this program would be for him. How he would receive individualized attention. How they would work with him on social skills. No. Not my first reaction. My first reaction – tears. Then anger and frustration, which produced more tears, which made me angry for crying more! My second thought was that of Micah being in a classroom all day with 6-8 other students of all ages who have melt downs and bad behavior. What in the world would he learn from them!?! Apparently, this thought escaped my mouth because I was handed tissue and assured that this was not a placement for juvenile delinquents or children with conduct disorders.

Just as I was settling into the idea of the alternative educational setting and my brain starts to form rational questions, the school psychologist begins to speak. He tells us of how he observed Micah in class and interviewed him. He explains the testing he did and how well Micah scored on the intelligence and academic performance scales. The psychologist then reports that although Micah has been diagnosed in the past on the Autism Spectrum, he feels Micah is best described as a child who is depressed and irritable. [PAUSE…..cock head to one side….wait, what?]

It all happened so fast. The referral for a new “special” school for “kids like him”, the change in diagnosis from ASD to Depression, continued special education eligibility as EBD (Emotionally and Behaviorally Disturbed), call next week to set up a tour of the new school, sign here and here, have a nice afternoon. I left the building confused and defeated but also furious. Furious that I had not taken that damn copy of the Parental Rights this time. What just happened and what does this all mean for my amazing little boy?

All that finally made sense to us had instantly become blurry. Has my child been depressed since the age of two when we first noticed that his differences were not just a phase he was going through? Is depression the reason why he has limited interaction with his family members? Why he pretends my co-workers are not standing in front of him, trying to talk with him? What about his brown diet or the struggles we have putting lotion on his eczema because he cannot stand the way it feels on his skin? Does he struggle to connect emotionally, bang his head or punch himself in the head when he is frustrated because he is depressed?

We continue to believe that Micah’s diagnosis of ASD is the correct diagnosis. What we are not sure of is how much to fight the school’s diagnosis and whether to question the placement in this new school. Of course, the most important thing for us is to ensure Micah gets the most appropriate services and treatment. We just want to make the right decisions for our kiddo. So, lots of special prayers going on in the Bryant house in the coming weeks.

Baby Steps

We have found a new therapist for Micah. She asked to meet with just Richard and I the first time which was very encouraging. We had hoped to find a therapist who would partner with us and give us feedback on how best to help him. She met with us two weeks ago and after an hour (actually approximately 42 minutes, but I will get to that in a minute) she suggested Richard and I meet with her a few more times before meeting Micah. We agreed but slowly came to a realization. Meeting with us a few more times probably means the problem is not him….it’s us!


Ok, I will take ownership of that. This parenting thing does not come naturally to me. Me, the woman who paid $200 to a lactation consultant to learn how to do the one thing that is supposed to occur naturally between mom and baby. Parenting does not come naturally to me, especially parenting a special needs child. My pride was a little dented by what her invitation for therapy implied but inside I was thankful that someone had recognized our cries for professional help and extended a hand.

Let me get back to the reason why our first therapy session was cut short. The school has my number on speed dial and no sooner did we start diving past the surface, they sent out the “bat” signal. I explained that we had to leave to get Micah from school. He was banging his head on a window and refusing to move out of the middle of the hallway. “Ok, well I guess we are done here”, she said with a smile. We smiled back as if to say, “Welcome to our world.”

Micah was suspended for three days. He had thrown food in the cafeteria, thrown school supplies at a student, kicked a teacher, thrown over a desk and well, you know the rest. The kiddo pulled off the supreme suspension schedule. He got sent home that Friday. Monday was a holiday and he was not to return to the school until Friday. I do not understand what school suspension is supposed to be teaching the child, but that is a topic for another day.

One of the things we are working on with the therapist is getting Micah to connect emotionally to what he has done. We made him write apology notes to the teacher he kicked and to the class. You may think, “duh, that is lesson one in Parenting 101” but for Micah this task is exceptionally difficult. He has muscle weakness in his hands and does not grip his pencil the right way which causes a lot of pain when he writes. He HATES writing!

“Dear Mrs. ______, I’m sorry”.

We pushed. Why are you sorry?

“Dear Mrs. ________, I’m sorry for kicking you”.

We pushed harder. Why are you sorry for kicking her?

“Dear Mrs. ________, I’m sorry for kicking you. I know I hurt you.”

After a good hour I was satisfied with that. I think he connected emotionally….as much as he can.

“Good job honey. Now sign the letter – Love, Micah.”

“WHAT???? LOVE???”

“Dear Mrs. _________, I’m sorry for kicking you. I know I hurt you.” SINCERELY, Micah

The Resurrection

My mom suggested that I start a blog about our parenting experience. As I pondered the idea I realized that I already had a blog started. The blog was started back in 2008 but it did not have a focus. It was just a modge podge of life thoughts and as my thoughts became more complicated, the blog fizzled. So, I decided to pull up that old blog and try to resurrect it.


My last post was the night before my 34th birthday entitled “Not Knowing the Answer….”. Two years ago. I had no idea how much my life would change over the next two years. I had no idea that a short time from that post we would get information that would change the way we related to each other as a family, the way we related to the world. Just a couple of weeks after my 34th birthday we received the diagnosis of ASD, Autism Spectrum Disorder.

One would think that knowing the diagnosis would give us the answer I was seeking. That could not be farther from the truth. Many doctors, therapists, psychiatrists, IEPs….later we have more questions than answers. Autism is a crazy thing. I am leery to share our experience for two main reasons.  My first fear is judgement.  I struggle with the thought of others judging my family situation and my parenting.  But, let's be honest...those of you who judge are going judge regardless of whether I write this blog.  The second reason is because I do not want people to think I am generalizing. The saying could not be truer “When you have met one child with Autism….you have met one child with Autism”. A friend of ours says “that is why it is called a spectrum”!

Our experience with Autism may be very different from your experience or from the stories you have heard about the disorder. Some of my stories may ring true for those of you non-autism parents.  Hopefully, by sharing our experience it will bring about awareness or maybe it will help some of you realize you are not alone in all of this.

So….here goes….