Hope for a full life

Some days start off so well in our home. Yesterday morning Ariel had a “first” and we were so excited. Our usual morning routine involves helping her get through her morning routine which involves a bathroom visit, brushing her teeth, rinsing her mouth with a Dixie cup and wiping her face with a moist washcloth. In the past, most of the steps were performed semi-independently with hand-over-hand support. Now, we tend to mostly use verbal prompts to help her along. Nemo is able to perform all of his bathroom a steps independently except for the occassional “parental” tooth brushing event. I needed to give all of this background to show how outstanding yesterday was for Ariel.

She actually opened her bedroom door and went to the bathroom all  by herself.  Now, some people would read this and misinterpret our excitement. Our excitement is based on the fact that she is not only becoming more independent, but also because she did not get distracted by any sensory stimuli along the way. Just a few months ago, she may have started playing with the water inside the toilet bowl or simply run to the kitchen to tap on the stove and may have ignored her urge to go to the bathroom. Ariel has incredible intellect, but she can be easily distracted and thrown off course by a sound, a light or even the wind. So yesterday morning’s events give us hope. We have hope that with just a little help and a lot of patience, Ariel can have a full life.  What is a full life? I believe it is a life where you are able to make beneficial decisions about yourself and/or others. Any physical, mental or emotional disability can affect an individual’s ability to live a full life, so every step toward any level of independence is worth more than words can say.

Biking inside the house…Biking outside the house…baby steps

They say when you have children that everything changes. Well, I must say that is definitely true in our home. We have become the kind of parents that are very “free” thinking due to the kids’ special needs. For example, we allow the kids to play ball, blow bubbles, even play running games inside the house. Those were all no-nos when I was a kid. We have rules and guidelines, but I find myself allowing them to have more freedom indoors.  When they were young toddlers, I started to bend the rules because we actually had to teach them how to play. As a baby, Nemo would sit and stare at a corner and rock back and forth for long periods of time unless I engaged him in some form of play. Ariel actually seemed more functional than Nemo until she turned 17  months old.  Soon I found myself teaching her how to play as well.  Socially they just seemed to be stuck or off course even though the autism diagnosis for both Ariel and Nemo came years later.

So what does this all have to do with riding a bike? Well, Nemo has been struggling with learning how to ride a bike without training wheels and Ariel will not even go near a bike unless it has a horn she can honk. These facts lead me to try to get on the internet and search for help. I found the “Lose the Training Wheels” program, but when I called, they told me that the camp is only offered to children eight years old and above. I felt crushed for about a minute and then I put my thinking cap back on. Soon we found a handle that you can attach to the bike and help your child learn how to ride without training wheels called “Bike Balance“.

We bought and attached the handle to his bike. Now all we  needed to do was build his confidence. I guess confidence often starts at home…literally. We have allowed him to ride the bike inside the house for the past week and a half or so.  Today, he trusted me and himself enough to take the bike outside (in 90 degree weather).  I told him, “Don’t worry. I won’t let go of the handle until you’ re ready.” He looked intently into my eyes and said, “Okay.” As the sweat poured down my back, I wondered what I had committed myself to. But then I looked at his big, proud smile and I knew it was worth it. Baby steps, right? Will Ariel ever ride a bike? Only time and patience will tell what either of them will ever do. They are full of potential. Just like all parents, we are here to help them along the way.

First Blood…I missed it

Last night Ariel fell down and skinned her knee for the first time. It was on my husband’s watch, so I get to blame him if she ends up with scarred knees (smile).  After I arrived home my husband told me what happened, and I made a lighthearted comment like, “oh darn, I missed her first fall.”  As soon as it came out of my mouth I realized that it actually did matter to me. I asked, “Did she cry?” He said, “Yes, but only for a few minutes.” Of course I pictured her screaming in the middle of the street and feverishly searching the gathering crowds for my face.  Of course none of that really happened. Did I mention that I have a hyperactive imagination? Regardless, my husband did a good job handling the situation. He said the only thing that he was unable to do was squirt her cut with our “ouch-free” saline. Ariel ran from him and screamed, “NO,NO!” when she saw the saline bottle. Naturally, I am  now wondering  if a freak infection has now started to fester under her band-aid (hyperactive imagination). On a  previous post I wanted “me time” and this post it seems like I do not want to leave Nemo and Ariel alone. So which is it? Both.

Summer crawl…where is the Fall?

Okay, I may be persecuted for my desire to have more “me time”, but I must admit that I long for the Fall. I actually look forward to missing Nemo and Ariel. Ariel even tries to sychronize our breathing patterns and feel the vibration of my words by placing her little hands on my neck very firmly.   From a distance a stranger would think she was choking me. It does not hurt one bit, but it does remind me how close we have become because of and despite the autism diagnosis. Before we had children, my creativity was wasted on projects with very little meaning. Now my husband and I must find ways to reach our children on a daily, no, hourly basis.  Of course, during the Summer I bare the brunt of it during the day. In the end it is all for a very good cause. 

After an incredible yet tiring game of freeze tag this weekend Nemo said, “You are my shining star mommy”.  He did not know that I actually started the freeze tag game to help develop his gross motor skills and improve his balance. In his mind I am just having fun, and that is the way it should be.  Apparently “untherapeutic” play has been my goal all summer long. When Fall arrives will I miss being “on call”  at all times? No. I will simply appreciate the fact that one day they will not need me as much as they do today. I think all parents strive for that.

Alzheimer’s and Autism and the Primary Caregiver

I do not know if there is any connection between the two diseases, but they are both part of my life. When my savvy, slick, witty grandfather was diagnosed with Alzheimer’s, my grandmother’s life changed forever. It was a slow slippery slope toward his decline, but now the inevitable has occurred.  He needs round the clock care and my grandmother has been providing that for him. After a rough flu, my usually strong, smart,  and funny grandmother recently had to be hospitalized. Caring for her husband  as well as herself proved to be too much. Needless to say, the entire family is scrambling in a panic. I must admit that I am panicked as well. What happens when the primary caregiver goes down? Who picks up the slack? If someone takes on the task, will they do it well?

Pondering my grandparents situation, I thought of our own. Our children are on the spectrum, but Ariel is the most severe of the two. Once in a blue moon, when we actually have a babysitter, I write down almost three pages of instructions for the the sitter. The list usually consists of the details of the schedule, the foods, the medicines, and the rules which Ariel and Nemo live by on a daily basis. Most of our friends have not witnessed Nemo’s tantrums, so they would be quite shocked if they baby sat for or us and had no clue how to handle him. As for Ariel, she can be sweet as candy one minute and bolting into traffic the next. How do you prepare someone for that? As for daily care Ariel still needs certain foods cut, support while dressing and bathroom assistance. Would someone be able to do all of these things and still love, tickle, hug and take them out in public? We are praying that we will never have to find out the answers to these questions.  Legally we must be prepared, but there is no way to prepare emotionally.

As for my grandfather, Alzheimer’s keeps stealing his memories. The effect has all of his children asking, “Do you know who I am dad?”.  I do not even bother to ask him. I simply announce who I am over the phone or even in person. Part of me is afraid of asking. It is the same kind of fear that I have that Ariel will just walk off with a stranger one day because they have a shiny bracelet or a bottle of bubbles. In the end, Alzheimer’s is slowly taking my grandfather away from all those who love him, and autism is preventing Ariel from truly connecting with all of those who love her. We can only watch and pray. Watch and pray.

Ultimate Connection

The last few days have been quite eventful. Nemo had yet another session on his bike with raised training wheels. All I can do is quote Jesse Jackson and say, “Let’s keep hope alive.” His fear of falling is sabotaging every attempt his father makes to help him to ride his big boy bike. We have been here before, but each new milestone brings new challenges. I remember Nemo’s extreme fear of going #2 in the toilet. I think he thought he was going to get flushed into the water. There was also his extreme fear of walking on cracks in the cement, walking on snow and walking on grass. You would never guess he had any of those fears today. How did we get through it? One scream at a time, lots of TLC, extreme patience and a good old-fashioned dose of “Do it or else”. In the end Nemo always seems to overcome his fears. The journey is just wrought with drama.

Another significant event took place at a local park. Nemo, Ariel and I were there  day before yesterday. It all began horribly. Ariel began crying and saying, “Go to the car.” the minute we arrived. On the other hand, Nemo ran happily toward the jungle gym without a care in the world. I tried to calm Ariel down by taking her over to the swings, but she was inconsolable. I was at a loss. She usually loves the swings. Regardless, I had to give Nemo at least a few minutes to play. As usual, other parents stared at me like I had the most recent strain of the swine flu. Over the years I have become quite good at looking aloof and quite unconcerned. I just focus on whichever child is melting down and ignore everyone else around me. In a way, I have learned to become somewhat autistic. I tune out the world on a regular basis. Is that healthy? Probably not.

The best part of this story happened when I decided to take a walk with the kids. The park has nature trails that go on and on. Ariel started the walk on a happy note. We skipped, raced and sang. Then all of a sudden she lost it again. She tends to decide for all parties involved when an event is over. She screamed and stopped walking. I continued walking and waved “bye-bye” in hopes that she would follow. When we were a few yards away from her , Nemo shouted, “We cant leave Ariel!”. I asked him why and he said, “…because we are a family”. He ran back to get her. Took her by the hand and she reached back. Nemo and Ariel showed me that day that despite any differences they may have, they are ultimately and beautifully connected.

Locked out

Yesterday we decided to eat dinner outside on our deck. Everything seemed to be going pretty well. My husband cooked chili, and I made the rice. The sun was shining brightly, Ariel was skipping in the back yard and Nemo was playing music on the idog. By the looks of things no one would think we were a sleep deprived family with two children on the autism spectrum. We were even listening to adult easy cheesy music which Ariel would usually protest.  Perfection came crashing to a screeching halt when Nemo kept pressing the idog’s play button. The idog was not connected to an ipod so it was playing its own programmed “music”. It was annoying and very loud. Did I mention that there was no volume button on the idog?

When we could not take the auditory torture anymore, my husband asked Nemo to give idog a rest. Nemo did what I never dared to do as a child…he talked back to his father. This was not Nemo’s first time talking back, but it shocks me each time he does it. So, my husband sent him inside the house. Nemo stomped into the house. We figured he would cool off in a few minutes, and then we would call him back outside. Then we heard, “Click, Click”. My husband said, “He just locked us out of the house.” Thankfully, my husband had his house key in his pocket. The question that comes to mind is: If an angry six-year old locks you out of your own house, what will he do when he is an angry teenager?

Fleeing from insomnia, embracing melatonin and training wheel trauma

Okay, I do not believe in jinxes, but I was almost afraid to write this part of the post. Drum roll please….Ariel slept through the night for the past three nights. One variable may be the addition of 2 mg of melatonin to her night time routine. We tried melatonin about three years ago, and it worked for about a week. I am praying that the effect does not wear off this time. I feel like a more “likable” mommy with more rest. Ariel is also a more “cooperative” little girl.  Sleep is a wonderful elixir for the mind. As I write this post, Ariel is having her most successful  “home-based” speech therapy session to date.  Her teacher is asking her questions and Ariel is actually answering some of them.  If her sleep pattern continues to improve, first grade will be less of a trauma/drama for all of us.

As for Nemo, the time has come to train him ride his “big boy” bike without training wheels. My husband raised Nemo’s training wheels a bit off the ground in order to get the process started. Yesterday was day one of his training. I was not home, so I can only share what I was told and what I heard. Just by chance, I happened to call my husband’s cell phone a few minutes after Nemo had attempted to ride his bike. When my husband answered his phone, I heard screaming, crying and my usually laid back husband sounded a bit intense.  He said, “Honey, I’ll call you back”.  After things calmed down, my husband called and told me that Nemo had yet another meltdown brought on by extreme fear. Nemo actually tried to ram his own father with his bike. Our usually sweet, silly,geeky Nemo does in fact turn into a miniature version of the Hulk when he feels intense anxiety or fear. I was not surprised by his behavior, but Nemo was surprised when his Dad commanded him back into the house. What will bike training session number#2 be like? I plan to be gone that day also…smile.

I brought a book…She hugged a tree

Ariel and I  made some seemingly irrational choices today.  I  took Nemo and Ariel to the park and I brought a book with me. Was I hallucinating? Was I delusional? No. But, for some reason I threw my  juicy romance/mystery novel into their snack bag. It was just a last minute whim. I always see other moms reading while their children play nearby. We arrived at the park and I delivered the usual “Do not….blah,blah or else…” speech to the kids. Nemo and I shook hands to seal the behavior agreement and, Ariel started laughing when I said, “No running away.”  I looked up toward the shady park and saw moms sitting on benches, reading their books, talking on cell phones…nirvana.

Our park adventure began with both kids wanting to go in opposite directions. She wanted the swings. He wanted the slides/fort climber.  So I pushed Ariel on the swing and watched him climb and slide. He is more independent, but I still feel guilty sometimes that I have to cater to my daughter’s needs more frequently. Regardless of my pangs of guilt, I had  to focus. Five minutes into our wonderful park experience another child lined up to take a turn on Ariel’s swing.   I counted down…10…9…8….and so on. When I got to number one Ariel seemed okay, but then the reality of leaving the swing behind set in. She said, “GO TO THE CAR!!”. I was able to coerce her little body toward the climbing/slide area. As she pouted loudly, I encouraged her to try the slide. She did- once. After sliding, she found a tree and examined it for a few minutes and then hugged it. Then she also became fascinated by a pine cone. It was as if losing the swing meant losing the rest of the park. She did not look toward the swing, the slides or the other children in the the park again. An hour later we left. Nemo was sweaty and happy. By then Ariel had made a pile of pine cones and (of course) I never touched my book. In the end we both made peace with our inability to have everything that what we wanted. That’s life after all.

Sonambula… autism, sleepless nights…an attempt at poetry

I found myself creeping out of your bed again
I pushed away my sandman and encouraged yours to come
I struggle with your sheets which are wrapped around my foot
If I make the wrong move at the wrong time, I am trapped
Please be kind to me sweet mattress
Do not squeak

Your breath is even now
Your small body has finally succumbed to evasive sleep
I continue to inch my adult body out of your kid sized bed
Your breathing pattern changes
I freeze
I pray
You continue to sleep

A few more centimeters and I am free
Turn the doorknob slowly
I am out in the hallway
I listen at your door
Silence

I am sleepwalking now toward my bed
It is almost six AM
I beg my sandman to return
I ask for sleep until you wake

(This “poem” was written in the early morning after yet another sleepless night with Ariel.  She woke up at 12:30 AM and did not go back to sleep until about 5:30 AM. My husband took the first shift with her and I took the second shift. So please forgive any cheesy, wordy language.)