Walking in a Winter Wonderland!

We have had over 30 inches of snow this season already. Noah loves the snow. He enjoys sledding, making/throwing snowballs, building snowmen, and eating snow. After one of our BIG snowfalls, I shoveled out a path to the swingset and under his favorite swing so that Noah could play. He was so happy.

The Calm after the Storm

I read the last two entries I created and was worried that some people reading this blog may think I am ready to jump off a bridge. Do Not Worry! Apparently it is easiest to blog when I need to vent.



Noah has shown wonderful improvement and progress over the last two weeks. The head hitting and banging occurs less than half the amount of time it was occurring a month ago. He has also demonstrated more interest in his toys lately. Before, he was just stimming with a flip card. I also do not need to prompt him as much as I had in the past. Now, when I say, "I love you", he says it back without further prompting. And I hear laughter in the house now. I sure did miss the laughter. Every home with children should have laughter.

We have a long road ahead. Additional foods will be eliminated from Noah's diet as we delve deeper into gluten, casein, and yeast free diet regiments. Medication may be altered. But at least we have found a path to follow. I think it will be a good one.

Thelma and Louise

This is difficult to admit, but there have been fleeting moments in time when I just want to get in a car and drive. Drive and not look back. Escape. When things were at their worst in our house, in the past few months, I have just wanted to leave.

Of course, any mother who has such thoughts then feels guilt. I shared these thoughts with a friend. Me and "K" first connected because her son also has autism. We started going to Autism Society meetings together, then started having dinner before those meetings, then doing things together as families. Our husbands get along, and so do the children. She also shared a time a few years back when she left for a day, just to escape her home too. The guilt I feel when I have those thoughts has not lessened, but I at least feel as if they may be normal in my circumstances.

I think back to the movie Thelma and Louise, where two friends "escaped" their lives by just driving. I envy the freedom they had(of course, I would never engage in any of the illegal activity!). In the end, Thelma and Louise permanently "checked out" and never went back. I, on the other hand, cannot fathom actually leaving. Even when things are at their worst, there is always hope. Thelma and Louise did not believe that. They thought there was no way out. My storms will pass, and the rainbow will be worth it all.

A Made For TV Movie

Lately, I feel as if my life is like one of those "made for TV movies." You know the ones on Lifetime that depict really dysfunctional families. The ones that make you feel so blessed that your life is nothing like that.....

Noah has been free of all medications for two full weeks. Brian and I made that decision together after a few months of medicine choices that did not work. We decided it would be beneficial to see what Noah looked like without any medicine. He has been taking psychotropic medicines for two years. Who is Noah without any drugs? Sounded like a good idea at the time.

Our Noah is now slamming, hitting, banging, and slapping. He is injuring himself over and over and over. It is painful to watch, and my heart bleeds. I cry myself to sleep as I listen to my son in the next room bang his head against his bed post until the early hours of morning. He has stopped sleeping. He has stopped wanting hugs. In fact, when I offer to hug him, he literally pushes me away and screams, "Go Away!". Last night he threw himself on the floor, arms and legs and head banging the tile floor, while crying and asking, "What is wrong with Noah?". (He sometimes refers to himself in the third person.) Now his sister is crying, Brian is holding him, and I am crying.

Obviously, we made another poor choice. Something needs to change because we cannot go on like this. Today, we started Noah on a gluten-free diet. We also gave him medicine. All medicine has side effects. We hate the side effects of this medicine, but we hate the effects of no medicine even more. I guess that is what it is all about. Weighing out the effects of meds vs. no meds.

Now we wait. Wait to see if we can eliminate the head banging, slamming, and screaming. Wait to see if we can go back to being a family blessed without distress and tears on a nightly basis. I just want my Noah back.

Contributions to Society

I connected with a gentleman from Ohio on Facebook, and he inspired me to write this blog. This man was diagnosed with ASD as an adult. He stated, "There are those who do not want to be fixed or cured, and I'm one of them. I fight for my right to exist." He then shared a number of web sites that he has created for his cause. This is my favorite. I hope you are as amazed and surprised by it as I was.

http://vids.myspace.com/index.cfm?fuseaction=vids.individual&videoid=38647308

Look at me, Mom!

The Wisconsin Early Autism Project (WEAP) entered our life two years ago. Basically, we have line therapists in our home approximately 30 hours a week. They work one-on-one with Noah trying to improve everything from communication skills to daily life skills. One of the programs, started one year ago, was to have Noah learn to ride a bike. It has been a slow, steady pace. Sometimes I thought it may not ever happen. Two weeks ago, it happened. Noah is riding a bike. On his own.

WEAP started last Fall by taking the bike into the house and having Noah just sit on it. Then the therapist would lean the bike to the right. Noah was taught to put his right foot down. Once he mastered that, they moved on to the left side. He was then taught to steer the handlebars in the opposite direction that the bike leaned. These exercises taught Noah the concept of balance.

Then we moved the bike outdoors. Noah would ride the bike with the therapist holding the bike. Then the therapist ran next to him with her hand on his back. The day finally came two weeks ago where the therapist could no longer run fast enough to keep up with him. Brian and I also did these exercises with Noah on the weekends. His bike riding skills have continued to improve with practice.

I can't begin to explain the feeling of pride I saw on Noah's face when he yelled, "Mom, look" while riding that bike. Every single accomplishment in his life is so HUGE when compared to the accomplishments of children who do not have autism. He has worked so hard for this day to come. I could not be more proud.

Now, we just need to learn how to brake.....

Happy Birthday

We celebrated Noah's 9th birthday while camping for a week at Long Lake. He requested a Wall-E theme this year. When Noah actually uses his language to request something, I try my darnedest to provide him with whatever he requested. However, the Disney/Pixar movie Wall-E has not been showing very long and I was unable to find the typical "party" supplies (i.e., plates, napkins, treat bags, etc.). But this is my Noah, and he used his words to make a request. I created a cake by stacking three 8 x 8 cakes on a plant stand with wheels. I decorated the cake with frosting, and topped it with binoculars for Wall-E's eyes. It was a success! Noah thought it looked like Wall-E!

Since I couldn't find Wall-E themed items for the treat bags, I went with a Space theme. Rockets, milky way candy bars, and glow sticks were a hit with the kids.

Noah's cousins were all there, as we were camping with most of them. We played games on the beach, ate potluck dinner at the campsite, and sang "Happy Birthday", and opened presents. Noah enjoyed his day. Camping in itself provides smiles. Add cake and presents.....Wow!

I look forward to finding what another year brings. If the past is an indication of what the future brings, then I expect great challenges as well as amazing accomplishments. I will embrace every challenge and every accomplishment one day at a time.

Flipping vs. Flapping

Noah used to pick up books, DVD cases, or other flat rectangular objects to flip up and down in front of his eyes. This "flipping" seems to provide him with a calmness, or an ability to tolerate his surroundings. He tends to do it mostly when he is unsettled, or anxious. Because we did not want him to flip books and DVD cases, I created some flip cards out of cardboard and shiny wrapping paper. Noah likes these alot, and requests them often. This way, books can have the purpose they were made for....reading. "Flip time" is incorporated into Noah's schedule on an hourly basis (or more frequently) as a reward after work completion. This schedule has worked well until recently.

Noah has now started to flap his hands in front of his face, or on the side, when he does not have his flip card available. My question now is, do we provide more flip time to avoid this flapping? After all, a flip card can be taken away (much like a nuk), but a flapping hand cannot (much like a thumb). I don't want flapping to become a habit.

Sometimes, when you engage in a behavior for long enough, it goes from being a needed behavior to just being a habit. Is this flipping a habit? No. I don't think so. It seems to go deeper than that for Noah. He behaves like an addict does when the flip cards are taken away, but it is not an addiction. It appears to be a life line for him. He just cannot handle the noise, crowd (even 1 other person in the same room as him can be crowded for him), or anxiety.

We will just do our best to keep Noah occupied with other things to prevent the flapping from becoming ingrained. I hope the flipping will lessen as we get the anxiety under control. Until then, we just do our best....

The Little Sister

When Hannah was born in December, 2001, Noah became a big brother. As she developed into an energetic, playful toddler, Noah referred to her as, "The Little Sister." To say, "Hannah", he needed to be prompted by my husband or myself. Hannah is now an independent, beautiful 6 year old girl.

Knowing that Noah is developing at a slower rate than his peers, I knew that someday Hannah's skills would surpass his academic, social, and language skills. I wasn't prepared, however, for that day to come so soon. Hannah is now reading, comprehending, analyzing, and questioning beyond the skills of her older brother.

I am so proud of her when Hannah takes the lead in public, in a motherly way, and holds Noah's hand. She claimed just a week ago, "Don't worry, Mom, I'll help Noah." It dawned on me at that moment that without ever telling her that he required more assistance than she, that she had figured that out on her own. Her intuitiveness to his situation is amazing, and my heart soars with pride when I see her helping Noah. On the other hand, I fear for her future when my husband and I are gone. This is a huge responsibility for her to undertake, and I hope it does not become an obstacle to her future.

All parents worry about the their children. I quess we will be worrying about both our son and our daughter long into the future. I plan to embrace every step of the way.

To Medicate or not to Medicate, that is the question

It has been such a roller coaster ride these past couple months. We had decided, after school personnel and in-home therapists commented on Noah's lack of attention, that we would try some medication typically administered to children with attention deficit disorder. But the Adderall we tried appeared to coincide with this aggression we had not seen before. Noah began hitting his head, stomping his feet, and yelling "No!" at us every time we placed a simple demand. These behaviors stopped when I decided, on my own, to discontinue the Adderall.

Then we went to see a pediatric psychiatrist to discuss other options. She gave great advice on vitamins, diet, etc. She also prescribed a new medication, typically given to children with attention deficit disorder. This one is called Vyvance and we were told it would not have the same side effect as the Adderall. Today marks one week that we have tried this medication, and I had to call the psychiatrist's office today to say we need to stop this one as well. Noah tantrumed for over 2 hours today. No one could comfort him. I have not seen him in this state before, and I hope to God I never will again. He hit his head repeatedly; so hard that he started to cry and say, "ouch". With tears in his eyes, Noah slammed everything within reach. He hit me, he hit a therapist. I truly believe he did not want to behave this way, but did not know what to do to stop.

I am actually hoping that the behavior we saw today is a side effect of the medication. That way, if I stop the medication, then the behavior will stop.

Finding the right balance between behavioral therapy and medicinal therapy is so exhausting. It is a very unsteady process, like walking a tight rope. And just when you think you have it figured out, the balance shifts.

Recovery

Many of the books I have read about autism are written by mothers of autistic children. I enjoy these books because I can empathize with these women; I feel their pain when they first hear the word "Autism", and I feel their unparalleled joy the first time their child says, "I love you." However, I am finding that the majority of these books describe the child as having "recovered" from autism. I have never believed that there was a cure for autism, and I had not heard until I read these books that anyone could be "recovered." Sometimes I have hope, dreams if you will, that this could be true. My Noah could possibly recover from autism. My Noah could behave just like a neurologically "normal" child. Could it be true?

I just have not seen any signs that he will recover. He has made progress over the last couple years, but nothing that would indicate in any way that he could recover. The progress has been slow and steady, but the academic, language, and social gap between him and his peers is increasing.

Anger is the feeling I am left with after I think of this "recovery" the books tell about. How dare they bring up my hopes, just to have me feel let down when I consider the facts of my own situation. These books tell of moms who worked nonstop 24/7 with their child. Women who refused to accept that autism would be a life sentence for their child. I am left wondering, "Am I not doing enough?" "Is it my fault that his accomplishments have not compared to these children portrayed in the books?"

Noah, I believe, is a more typical child with autism than the children I read about in the books. I constantly remind myself of that. In the meantime, I will continue to celebrate every new vocabulary word and every small step that takes us closer to our ultimate goal - For Noah to reach his True Potential, whatever it is.

A Place To Go

Sometimes I just need a listening ear. Someone who doesn't try to solve the issues, or change the way things are. They just listen, so I can vent.

This blog is what I hope will be that listening ear. And if I can help just one person in this world to know that they are not alone in what you go through as the Mom of an autistic child, then I will feel I have done good.

That is not to say, I do not like advice. I have read most of what the library in our town, and the surrounding towns have to offer on the subject of Autism. I have read stories of Mom's like me, stories of children like mine (and some NOT like mine!), and reports from the so-called professionals. I have tried the gluten-free, casein-free diet. I have had ABA therapy in our home. We are seeing a new psychiatrist this afternoon because we are willing to try medicine.

I have embraced this Autism that crept into our home shortly after our son turned two years old. I love his smile, his twinkling blue eyes, and his love of all things simple. He has changed our lives in ways I cannot explain. We are blessed.