Christmas 2011

- from Christy

We spent weeks in preparation. The Christmas tree was filled with non-breakable ornaments, the decorations were all arranged just out of reach, and now it was time to purchase presents. Jeremy and I devote a lot of thought to our gift giving. Our children are spoiled just by nature of living in the United States, but we try to give thoughtful gifts without going hog wild. (For anyone non-southern reading this post, "hog-wild" is a term referring to being "so wildly excited as to be irrational or devoid of good judgment.")

Olivia and Jack tend to be very easy to please. Their wish lists are short and include items that they have been interested in for some time. This was really the first Christmas where Judah was aware of the gift giving and celebrating. I'm convinced he would have been thrilled with a lump of coal in his stocking. Jalen is not terribly hard to please either. He is pretty clear about what interests him. Last year he was into dressing up, and so he got a full length mirror and a box of dress up clothes and hats. This year he has been interested in microphones, telephones, cameras, and stethoscopes. This may sound very normal, but Jalen fixates on items and carries them around all day long. That is where the behavior no longer appears normal, and would be considered atypical.

Josiah is another story entirely. Trying to figure out the perfect gift for him is a nightmare. We have the same desires as other parents. We want to be confident that we have found the perfect gift. One that brings him instant excitement and causes his little face to light up with joy. But the truth of the matter is that we rarely feel confident about our purchases, and we most often don't get the joyful response we were hoping for. Every birthday and every Christmas, we try nonetheless.

Jeremy and I were pretty sure that we had nailed it this year. Because Christmas fell on Sunday, we decided to celebrate a day early. We knew that Christmas Eve morning would come, and we would ALL be thrilled and happy and feel special. Christmas Eve morning did come. Josiah did well for the first little bit, and he even seemed to enjoy his first small gift. But, it didn't take long for him to get overwhelmed and disinterested. I tried over and over to draw his attention to the presents I was opening for him. He would sit down long enough to enjoy some candy from his stocking, and then he would go back to swinging in his swing, and staying on the outskirts disengaged and agitated at times. We were not surprised by Josiah's behavior, and we certainly weren't angry. I asked Jeremy if it still bothered him, and he said of course it was still heartbreaking. There are some aspects of this disorder that cause the same pain again and again.

I kept my emotions in check until Papa and Meemaw called to hear about the excitement, and, as always, I welled up just hearing my Mama's voice. She let me have my moment of sadness, and then it was time to buck up. I had four other children running around excited and ready to take on the day. And after the excitement settled a bit and a good nap was had, Josiah warmed up to his presents, and has been enjoying some of them ever sense. Yes, we did a great job of choosing gifts that Josiah would enjoy, but we had to be patient and let him find the joy of the gift on his own timeline.

 Moments like this make us treasure our faith all the more. How thankful we are for an eternal hope, and for the promise that one day all Christians will experience perfect joy together in heaven. We are so grateful for God's gift of His son Jesus, for the sinless life Christ lived, and for His sacrificial death on the cross that provided a means for us to be forgiven and saved. Yes, we have an eternal joy and hope!

Feeling Atypical

- from Christy

The holiday season is upon us. Thanksgiving, Christmas, and New Years bring a flurry of parties and get togethers that keep our calendars booked and our stomachs full. I have always loved getting together with family and friends, and many people who know me well might even label me as outgoing. (Ok, stop the snickering.) Jeremy would be the first to tell you that, in our early years of marriage and parenting, I pleaded for us to "go out" every weekend. I longed for social interaction! In a lot of ways, things haven't changed. I'm still the girl that loves a house full of people and lots of good conversation. But, in some ways, I couldn't be more different.

If I'm being honest, having children who have developed in an atypical fashion has left me feeling quite atypical myself. It's more than just the common complaints of motherhood like feeling out of touch or trying to communicate with burnt brain cells. There is an anxiety for me that comes with being around normal people with their normal children. I know the word "normal" is not politically correct, but it's true none the less. When you're lost in your own world, when you can't talk, when you can't stop moving, you are not normal. You are different. The politically correct word is atypical. And, when you care for someone so atypical, you feel different and not normal. Atypical. Well, at least I do.

I adore my family. They do an awesome job of loving and supporting us, and are always there when we need them. Over the past year, whenever we would plan family get-togethers at my parent's house, I started having a lot of anxiety leading up to the time we would meet. I think more than anything it has to do with seeing so clearly just how different our boys are. I long for Josiah and Jalen to interact with their cousins. I want so much for them to sit around the table and eat with everyone else. With seven cousins and three siblings, we have ten typical children who are growing and developing normally. And when the babies in the family passed Josiah and Jalen in development, it only served to make me more emotionally raw. I really don't want to be the spoil sport, the party pooper, the drag who cries at every function. Right now, my strategy for combatting this is to show up early. If I get there before the party starts, I tend to get the emotion over with. It's not ingenious, but it helps. I am determined not to let this spoil the joy I have in spending time with family.

This is me letting Jeremy know that I was having a hard time.

It has also become increasingly difficult for me to take those all too important breaks from time to time. I'm ok if Jeremy and I go out for a few hours, but, even then, dinner and a movie is about all I can handle before breaking out in a cold sweat. Leaving Josiah is just plain hard. The real anxiety comes when I have to go to functions by myself. Mind you this only happens a few times a year. It's the conversation that often gets to me. Autism is such a huge part of our lives that I find it hard to talk about anything else. I end up feeling awkward and tongue tied. We just had a lovely ladies Christmas dinner at our church last week. I had a lot of fun, but it wasn't without its bumps. I welled up with tears a few times, and sent several texts to Jeremy to check on Josiah. The important thing is that I went. It is therapeutic just going, and I ended up having an enjoyable evening.

This is Jeremy's thoughtful text back. I love him!

If you're a parent of a child with special needs, you may know just where I'm coming from. The amazing thing in all of this is that God is the giver of faith and He also created us to be emotional beings. It is natural to struggle with fear and anxiety at times, but the point is just that. We should struggle. It is when we allow ourselves to become paralyzed by our emotions, that we fail to trust in the giver of faith. We have to remind ourselves again and again that God has a purpose and a plan that we can't begin to fully grasp or understand right now. Feeling atypical is just one of the means of stretching us and molding us into the people and parents He want us to be.

2 Corinthians 12:9, "But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.'"


   

   

A Message from Meemaw

What a privilege to be asked to contribute to our children’s blog.  I have laughed and cried along with them as I have read each entry.  My message is from the perspective of “Meemaw” and to discuss some ways that Bob (Papa) and I have tried to come-alongside Jeremy, Christy and their children in the midst of what will be a lifelong trial – one filled with many joys but also with many frustrations and things that are just down right hard.

Meemaw and Jo in the snow.

How are grandparents to help?  By all means the worst thing you can do is say, “I’ve raised my kids, now they can raise their own;” or, “I am just too busy to help.” Everyone can do something! Thankfully, we live near our children which affords us the privilege of seeing our children and grandchildren often and allows us the opportunity to be of help to them.  Let me give you some concrete ways that I believe have proven helpful:
 

1. Pray often for your children and grandchildren.  This can be done no matter how far away you live.
2. Don’t be quick to judge!  Bob and I are not living the minute by minute trial that has been entrusted to our children.  Our policy is to offer advice when asked!  
3. Be sensitive when Mom and Dad need a break.  Let that break be what helps them most and not what might be most convenient to you.  We’ve found that Saturday mornings seem to work best and do our best to offer that at least once per month.
4. In the words of my dear mother, “Open your eyes!”  In other words, be observant to ways you can relieve stress  - wash a load of clothes, clean the bathrooms, pick up toys, pick up siblings from school, wash the dishes, clean hand prints off windows (unbelievable sometimes!), provide a timely meal or money for one, etc.  You get the idea.  Those day to day tasks that can seem so overwhelming when you are at the end of you rope both physically and emotionally.  
5. Be a sounding board!  Sometimes Mom and Dad just need to unload, and it may not always be pretty. Let them blow-off without judging.
6. Have a sense of humor!  (I have to admit that can be difficult when a “Poo Digger” was not worn and should have been!)
7. Love those grandchildren!  They are each a precious gift from the Lord whether typically developing or not.  Find ways to spend time with each to show them that they are special to you.
8. Thank the Lord for each grandchild you have!  Each one has been equipped to do God’s will and serve the purposes He has planned for them.
9. Recognize that God in His sovereignty has given these precious children to all of the family to display His glory and for our eternal good.  Pray that the Lord will further His Kingdom through these special children.
10. Hold fast to each moment you have.  None of us is promised tomorrow.  Treasure the time the Lord gives you with your children and grandchildren.

These thoughts have been somewhat random and certainly not exhaustive.  Hopefully, they have provided some ideas to those of you who may be grandparents of special needs children to begin thinking of ways to encourage your children and grandchildren.  How we praise the Lord for each grandchild He has graciously given to us!

Meemaw with Jay back when you could hold him still.

Papa and Meemaw

- from Christy

I have vivid memories of my Grandparents coming to visit our family when I was growing up. There was always great anticipation for their arrival, and I remember that very often there was a "to do" list that they insisted be ready for them to complete during their stay. My grandparents were hard workers, and their language of love was giving and working around our house to ease the burden of chores and time-consuming projects that my parents would otherwise have to complete. Don't get me wrong, we had a lot of fun during their visits too, but they always left us in better shape than they had found us in. It was a blessing to my parents and a lesson for us kids.

Scroll forward several years. My grandparents are all with Jesus now, my parents are now the grandparents, and I am the grown child who is now being blessed. My Dad and Mama have always gone above and beyond to help their children out. They're always available and always willing to go without, to change their plans, to arrange their lives all for the purpose of loving their children and grandchildren more and better. I am convinced that no one works harder at this than Bob and Jane LaTour.

Dad and Mama have been there for every birth and every trial and every moment in between. In God's perfect sovereignty, Jeremy and I are now in a place of even greater dependency on my parents. Josiah's needs are so tremendous that we are really only able to leave him in their care whenever we need to be gone for any significant length of time. The boys' needs make keeping up with things around the house challenging to say the least. My parents are ALWAYS helping out with laundry or cleaning or yard work. You name it, they do it. But they don't just provide for our physical needs. Jeremy and I turn to them during those very emotional times too. Mama calls every day to get the run down on how we are holding up. They understand like no one else how hard this all is at times, and how much of an emotional roller coaster we are on. They do a great job of not judging us during our weakest moments while still encouraging us to focus on God's perfect wisdom and plan for our lives.

I often become concerned about being too needy, concerned about monopolizing my parent's time, concerned about burning them out, and concerned about how we will make it in years to come if something ever happens to them. Bottom line, we didn't choose Autism - it's part of God's plan. I have longed from time to time to just have a moment of "normalcy," a moment where we weren't so needy, a moment where we could just go and be like everybody else. But that is just not what God has planned, and I know that we are safest, and best, and happiest, and most joyous when we are smack-dab in the middle of HIS plan. How thankful Jeremy and I are for my parents, and for the fact that God is using them to help in practical ways and using them to help sustain our hope in His eternal purposes. We love you Dad and Mama, and can't thank you enough for all you do!    

Impulsivity

- from Christy

Impulsivity (or impulsiveness) is the inclination of an individual to initiate behavior without adequate forethought as to the consequences of their actions, acting on the spur of the moment.

Thank you Wikipedia for that definition. While technically accurate, it fails to truly comprehend the destructive nature of this behavior when it comes to Josiah. A more exacting definition of impulsivity in Josiah would be the need to touch everything and everyone, often times destroying or injuring said thing or person. Do we tell him no? Constantly. But the reality is that he does not understand or he does not remember that the behavior is inappropriate most of the time. Don't get me wrong, I'm sure there are times when he is being an absolute stinker, but it is impossible to discern when it is one of those times. Whether it's dumping the contents of the refrigerator all over the tile, violently clearing everything off the counter tops, tossing his cup of drink after every third sip, grabbing at food and slinging it everywhere, pouring the volume of dirty dishes from the sink, pulling people's hair, licking people's faces, sticking his finger in people's nose or mouth, the impulsivity is constant and relentless. In the case of this morning about 5:00am, he stepped on Mama's net-book screen and crushed it. In the past minute, he dumped a glass-full of dish water from the sink, pulled Judah's hair, knocked my glider rocker over, and snatched part of Judah's toy sending him off the deep end. And he is now standing in front of me naked. Time for a Poo Digger.

Josiah's need to perform self-stimulatory behaviors only magnify his constant motion and impulsive urges. In the Autism community, this is referred to as stimming. Stimming is "a repetitive body movement, such as hand flapping, that is hypothesized to stimulate one or more senses." In the video below, you see Josiah engaging in one of his favorite stimming behaviors. Needless the say, the arms of my couch do not accumulate dust. Don't you think pioneer women would have loved to have Josiah around during the pre-vacuum era when dust and dirt had to be beaten out?
                   
Dr. M., our developmental pediatrician, explained to us that the neurotransmitters in Josiah's brain are not firing properly. The neurotransmitters that cause you excitement or fear, fire in Josiah's brain on a second to second basis. This is the cause of his constant need to move, and his inability to gather himself and focus. Jeremy and I don't know how this makes Josiah feel, but we can only imagine that it is exhausting for him to always be "on."

 

You can hear Judah in the background talking about Josiah.

The decor in our living room consists of a crib mattress, slide, trampoline, and swing hung form the rafters. We have bins full of toys that are suppose to give Josiah input to calm his senses. The hope is that he will use this equipment to get his energy out in appropriate ways.

The crazy thing is that he does all of this with a cherubic smile and innocent shine in his eyes. There's sheer joy and excitement in his movement most of the time and, occasionally, a little deviousness too.

Are our reactions always holy? Far from it. But we do have moments when perspective is our strength and God allows us to react in love and understanding. Sometimes. Jeremy and I know that my laptop is just a thing and our stinker meant no harm. The Risperidone that Josiah is taking is supposed to help regulate his agitation, irritability, and impulsivity. We are thankful for two out of three today, and pray that in time Josiah's impulsivity will calm.