boys with autism – sherylscript

ImPerfect Motherhood

I told my then two year old son, Nick, to use his fork while eating. He complied. He picked up his fork in his right hand, and proceeded to feed himself with his left hand. Not exactly what I pictured or expected, but he did what he was suppose to do.

That illustrates motherhood. Not exactly what I expected, but what it is suppose to be.

I’ve not been a perfect mom, but I’ve been busy raising perfect children, five boys to be exact. It is a work in progress. I must continually “guide” my perfect boys. Correct them, admonish, encourage, enlighten, cheer, etc. The list is endless, but at some point, they will be perfect young men. HA. A mom must have a sense of humor.

My boys are almost grown. If I could do it over again or give a young mom advice, I’d not sweat the small stuff. However, I’d pay attention to the small stuff. It’s those silly moments of mistakes or unpredictable moments that make the memories.

One of my favorites was five years ago. I purchased raw milk to the tune of $10 a gallon. I told my boys that they had to be careful to not spill. Of course, one of them spilled the full glass of “white gold”, and they all became statues. No one said a word, but simultaneously, they all moved their plates and started lapping up the spilled milk off the counter. It was the funniest moment. My boys became human vacuums, and there was not much milk left to clean. Not one drop hit the floor.

And they were shocked when I laughed.

Then there was the time I was teaching the boys how to sort laundry and load the washing machine. Sort by color and run a full load. So my Nick, about ten at the time, sorted the whites and the darks. Since neither load was full, he put both loads in, but the whites on one side and the darks on the other. Then he ran the machine. I had been home to see the loads sorted, but then left, thinking he had it down. The picture tells a different story.

To read that full story, click here:
http://sherylscript.blogspot.com/2011/02/cody-surprised-me-by-doing-laundry.html
Again, I had to laugh, and I kept teaching.

I was not always laughing. I have shed many tears. My heart broke when my youngest three were diagnosed with autism. Working with teachers, therapists, and doctors, even priests, and family members… the years were long and hard, but now my boys are working or going to college, something beyond what the specialists thought possible ten plus years ago. My heart is now overjoyed!

Prayer and laughter are a must to any mama. We all have our journeys with our children. Each one special. Love them and enjoy them. They grow up too fast. The days go slowly, but the years speed by quickly.

I now lament the two miscarriages now more than when they occurred. I’d have a 14 and a 4 year old. Of course, they’d be boys. Garrett and Caleb. I can only dream what their lives would have been, but this is also a part of motherhood.

A mother’s love is the only love that, if successful, is the parting of the two. Three of my boys have moved out. They have had their struggles, but they call and we talk. Maybe they take my advice or not. That is ok. I have done my best, and they are young men making their way in the world.

Now I look forward to grandchildren. Yes I have two, but I’d love more.

Cameron vs Camp Pendelton

Looking down the barrel of the gun

Cameron left yesterday with his JROTC class for four days at Camp Pendelton in Southern California. I read out loud to Mike everything that we are signing away on the release form, and Cameron was loving it: (injury from but not limited to) flying projectiles, explosions, flying and motor vehicles, live munitions… The list goes on.

Activities involving massive weaponry would make any mom worry. Not me so much. Instead, I worry about the military base surviving Cameron. I think we should have had the administration on the base sign a waiver releasing us from lawsuits as they are bringing Cameron onto their field…

My dad introduced Cameron to real firearms when Cameron was quite young. We wanted to ensure that Cameron, as well as all our boys–even with autism, knew how to use and respect guns. Consequently, my dad has taken the boys to a shooting range. Since then, Cameron has been working on marksmanship randomly, and he loves it. He has decorated his room with the paper from his target practices.

I am not sure where Cameron’s interest grew. Perhaps, video games and movies have inspired and enticed him. He has joined the marksmanship club at school, so he continues to learn about the weaponry as he practices.

Cameron has found a hobby he likes, and he is quite good at it. Through the JROTC, he should learn the self discipline necessary to handle the dangers presented. Of course, they don’t use live ammunition on campus, but guns still demand to be treated with care and maturity. Cameron can be quite “spirited and enthusiastic” when given an opportunity to be unleashed!

Cameron is thriving on it all!

Here’s a link to Cam at target practice: http://sherylscript.blogspot.com/2014/07/in-spirit-of-second-amendment-learning.html

Your Boys Give Me Hope

Ryan, Nick, Cam. A few years ago. Windy beach day.

Last Friday, I was shocked. I was leaving church when an elderly lady stopped me to ask a question. “I hear your boys have a touch of Aspergers. How are you working with that? “

Several thoughts went through my head at once, yet I wanted to answer this woman concisely but thoroughly. I must have hesitated too long. She continued, “My grandson has been diagnosed with autism.”

Once she said that, I answered, “My boys have autism. 299.0. No aspergers. No high functioning autism. Full blown autism.”

Her face reflected astonishment. “I know your boys. They are so polite, and they talk to me.”

Now it was my turn to be stunned. I am always surprised when someone outside the family says that my boys “talk” with him or her. How “talk” is defined by each person varies, but the social interaction of any sort is remarkable. That makes me smile. My boys are conversing to some level–independently.

Wow!

We continued our discussion briefly. I outlined the therapies that have taken place in the last ten years. I described the sensitivities and issues my boys faced back then, like non-communication and intolerance to transitions. I mentioned the prescribed meds and the switch to a clean diet.

At the end of our five minute conversation, this woman’s face showed some sign of relief. “Your boys give me hope for my grandson.”

That just made my day. I was almost in tears. I remember being in her shoes, hearing the diagnosis of my boys. I know the long road that lays ahead of this boy and his family. I am glad that his grandma can tell his mom that she knows some boys who are progressing well, despite autism. Or better yet, with autism.

Fighting For My Medical Records

Last week I had to contact the surgeon who removed the tumor because the tumor has returned. I found out that this surgeon is no longer at the office. I was never notified that the doctor was leaving her practice. I was given a number of her answering service and told that my message would be passed on.

The next day I called again and was more specific about the urgency of receiving a return call. I was immediately connected to the doctor. She seemed rather cavalier to learn about the tumor. She conceded, “It certainly sounds like it’s back.” This doctor referred me to another surgeon and said she’d be glad to release my records to him.

I called the office again and asked for my medical records. The person I spoke with said that the doctor had taken all of her records, and the doctor would only release them to another doctor. I said that was illegal. I could hear a sigh from the other person, and she said, “You will have to take that up with the doctor.”

I cringed. Why is this doctor not willing to give her patients their medical records? With all my encounters with doctors regarding my boys’ autism, I have never been denied medical records.

I read the state medical board website which confirmed that this surgeon could not withhold my medical records, especially since this was a case of “continuity of care”. I studied and memorized several phrases from the website. I sent an email using several of these phrases and formally requested my records in writing.

The next morning I called the answering service. I emphasized to the person taking my message to include “illegal to keep my medical records”. The call ended, and I was closing my flip phone when it started ringing. The surgeon herself was on the phone.

I explained I wanted my medical records, and she could not withhold from me legally, especially under the “continuity of care”. She gave me several reasons why she wouldn’t release my records. This surgeon obviously doesn’t know me. I am not going to take no for an answer.

The first excuse was, “I’m treating all my patients the same…” I cut her off. I didn’t care. I repeated, “It’s illegal for you to withhold my medical records.” She was willing to release my records to another surgeon or primary care physician. For every excuse or reason, I simply repeated the mantra “It’s illegal.” She finally agreed to fax them to me.

The next day she called me to say that she couldn’t release my records without a written consent. I told her about the email. She looked and verified that she had it. Within two hours, my fax happily printed out my medical records.

I remain suspicious as to why she didn’t want to release them. I read them and found nothing weird or unknown. I am disappointed that I had to spend the time and energy fighting this battle to get my records. This doctor stole time and energy that I could have spent with my boys. This doc will never understand the impact of her actions.

Thank You For Your Consideration

My Nick

So, the other day I asked the boys if they wanted to come with me to run a few errands. I was going to end with dinner out, but I didn’t tell them. I was curious if they’d be willing to help me out.

The responses I received were mostly typical. Ryan and Cameron chimed in unison, “NO!”

Nick, however, responded with a surprising response, “I thank you for your consideration, but no thank you.”

My mouth dropped. I was stunned. That is the most Nick has put together without hesitation and rehearsal. Not only that, but how courteous. How polite. I asked him if he had heard that somewhere. He shrugged his shoulders. I am not convinced, but I will let that be his secret!

I smiled. AND I thanked him.

I ended up doing my errands alone, but everywhere I went, I had a smile! My boys with autism CAN answer with more than a one word answer spontaneously.

Dinner out would wait for another day.

Prepping for Surgery

I tried to describe this experience to a friend: The “something that may be cause for concern” is a “nothing to worry about” that “needs surgery”.

I’ve seen a few healthcare professionals recently. At every appointment, I’d hear the same tip-toe dance. As the medical visit progressed, the doctor or nurse became very reluctant to speak. The above quotes were uttered by these medical professionals, just not how I have strung them together.

This reminds me of all the testing Ryan went through before being accurately diagnosed with autism. Ryan was two years old when we started seeking medical help. At the age of 5, he was initially diagnosed with PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified), meaning there was something going on, but the docs didn’t have a clue. As the years passed, ADD, ADHD, OCD, and speech delay were added to the list. Doctors couldn’t agree. Just for humor, I added ABC and XYZ to the list. When Ryan turned 7, he was finally diagnosed with autism.

I have since learned that medical and educational professionals like to “ease” parents into a potential diagnosis. They seem to think that is acceptable, and we parents appreciate the steps leading to a devastating reality. NOT TRUE. At least, in my case, I’d prefer to be told the worst case scenario, and then ease up if necessary. Each diagnosis that Ryan endured broke my heart more and more until it was finally shattered with the diagnosis of autism.

So now it comes to me and a lump. Each nurse or doctor initially told me not to worry. However, when each heard my family history of “lumps”, the demeanor changed.

My father has survived several types of skin cancer, including melanoma. He has also survived lung cancer. Twice. The last time he was given 4 months to live. That was 13 years ago, and he is alive and well. I call him a walking miracle.

So out will come this lump. I told my sons individually. Each reacted differently. Stu freaked. Ryan and Nick accepted it quietly. Cam was on the phone, telling his friend all about it. They understand that, as of now, it’s just a lump. When it comes out, it will be sent to the lab, we’ll find out if it is something more serious.

I am still not worried about me. I am concerned about my sons and being to progress without guidance, so the focus this summer will be to give them opportunities to problem solve and be independent. Of course, all parents strive to teach their children to be independent. It will just take a little longer for my boys with autism. With or without me.

Tennis Today: Oh–Schedule Change

Today was suppose to be another tennis match for Ryan and Nick–at their home school. I dropped off the boys (because I have another boy to get to baseball practice). As I was leaving, the coach waved for me to stop. I drove closer to him, and rolled down the window.

“There’s been a change,” states Coach W. “Today is an ‘away’ game. Yeah, the schedule says ‘home’, but…”

Change. Sudden change. Oh what fun for boys with autism.

I thanked the coach for letting me know. I told him that I’d let the boys know. So I pulled into a parking space and ran to the boys.

Although the rest of the team members were picking up the tennis balls, racquets, and gear, no one had told Ryan and Nick what was happening. I told the boys briefly that the location of the game had changed. I made sure one of them had his cell phone.

Ryan seemed to adapt quite easily. Nick had a look of apprehension on his face. I told Nick not to worry. I encouraged them to have fun and do their best. I also said to stay together and call when they were back at their school. They were the last to get on the bus, but they seemed at ease.

Another round of plans end in a “surprise”. I am bummed that I’ll miss this match. I’ll find out how it all turns out when they get back. 🙂