Fun and Frivolous Results

Last Saturday morning, as the boys were getting breakfast fare out, I told them that they needed to serve cake first. Their reactions were quite different from what I expected. Ryan's eyes opened wide in disbelief. Cam paused for the brief moment and then wrapped his arms around me and said, "I love you, Mom." Nick observed his brothers in silence and moved the cake to the table.

I expected the boys to be surprised; I also expected some confusion or hesitation. Usually, my kids follow a black and white mode. The schedule. They don't vary much. I really thought I'd cause a commotion. Nope. They rode the strange tide as if they were used to unpredictable situations.

Breakfast started off with cake followed by fruit, muffins, and turkey. Lunch was left overs. They had already guessed that eggs would be a part of dinner. Of course, they wanted another round of dessert.

So my teens with autism are showing flexibility and adaptability!

Fun and Frivolous

I made a cake last Sunday, just for the fun of it. No birthday. No special occasion.

Confusion.

The boys didn't know what to say. They looked perplexed and confused. They didn't understand that it was ok to make a cake.

That made me think about how much we do because there is a reason. For kids with autism, a schedule is a dictate for life. NOTHING happens unless there is a reason. Life is black and white. Gray is cause for confusion. While a schedule can make life easier, it can make life bland. I want my sons to be able to enjoy life, not just "have to do" things.

During this Advent Season, this is one lesson I will teach. Spontaneity. It's ok to do things without planning. Autistic kids have a difficult time if things are not predictable, but life doesn't happen always according to a plan (does it ever?). Nonetheless, life can still be enjoyed.

My plan for tomorrow is to have our meals backwards. Dessert for breakfast. I think that will be a pleasant surprise. It might totally throw their world upside down. However, I don't think they will argue. Much. They might even paraphrase Bill Cosby about chocolate cake for breakfast--it has eggs, milk, wheat--a great breakfast! We'll end with eggs for dinner.

I never knew baking a cake would cause such a stir!

Cheering For A Normal Conversation!

"Our team scored 24, and their team earned 41."

Nick was not happy that his high school football team lost in the playoffs. Nick was discussing the game with his grandpa last weekend. I was right next to my dad, so I listened with interest. Nick had started the conversation which intrigued me. It's always an adventure when he talks.

I immediately noticed the sentence structure and word choice. Usually, Nick uses very simple sentences and repeated words. This time he had used different verbs and correct tense. WOW. He also used a compound sentence. Yippee. His speech continued to show incredible progress since his chelation over the summer.

Ok. So most people would be bored with the grammar of my son's speech, but this is a kid with autism whose speech is extremely limited. He can be difficult to understand. The other person must exercise patience to allow Nick the processing time needed between his sentences. Most of the time he uses related words vs the correct phrase.

For example, most people would not dare to ask a person, "How many pounds are you?" The message is received, but it's not normal to ask using those words. The question, "How much do you weigh?" would be normal question to not ask. Nick was using correct terms, not related terms. The correct tenses and structure are cause for applause too. Nick was easy to understand. THAT IS A FIRST. (Whether that question should be asked at all is another obstacle to autism--knowing when not to ask certain questions.)

Nick finished the five minute conversation by saying that he'll cheer for his football team next year. He is not going to give up on his team. Likewise, I'll continue to root for Nick's continued speech improvements. GO, NICK!

Photo credit: ElvertBarnes

Chelation Summary

Chelation is highly controversial. I didn't like the idea. My sister (critical care nurse) and brother (chemist) warned me not to do it. The research I did several years ago highlighted kidney and liver damage, even death. The cost was prohibitive.

We tried other methods to help the boys' health, but nothing was removing the metals in which they constantly tested high: aluminum, mercury, lead, arsenic, uranium, are but a few.

In July my husband and I decided we would try it with a very careful eye on the boys. Nothing outrageous happened. We were encouraged. Within a few weeks, Ryan and Nick were talking more. Within the next few months both were much more active in school. Class presentations, dances, even dating!

Would I recommend chelation? Yes, but with absolute caution and after all other methods were exhausted. It is very expensive, and I can't deny that I'm putting meds in my kids. Consequently, we are not continuing chelation at this point. We are happy with the results thus far.

To see actual progress details and dates, please read the blog entries in August, Sept, and Oct.

Amazed and Thankful

Both Ryan and Nick went to the Homecoming Dance, and they both had fun. I am amazed that they wanted to go. I am thankful that they could go together with friends. They are still quite shy and quiet in most circumstances, yet they are courageous enough to keep trying. I wonder how many times they felt like quitting. I have often thought of the kids who walk away because they don't understand my boys. Then I think of my boys and how they felt when left alone.

I can't get into their brains. I have asked how they think or what they think. Quite often, they can't express their thoughts.

I remember when Ryan was four years old, and he couldn't talk. He couldn't say, "I love you." He didn't want to be hugged or touched. The walls in my house had dents from him leaning back to avoid hugs. At that time I had no idea he had sensory issues.

When Nick was two, he could say, "I love you," but it was one word at a time with long pauses between the words. "I"... "love"... "you". He had not progressed at all when he turned three.

Now I see them interacting with peers. Many classmates are patient with Nick and Ryan; many are not. I still can't help but be amazed and encouraged by my own kids--teens with autism--not giving up.

I am very thankful for my heroes.

Chelation Leads to a Class Presentation!

It's been three months since the boys have had their four IVs of chelation. We have seen much progress in their socialization. It's even better when people outside of our family notice. We received an email from Nick's biology teacher stating how well Nick did on a presentation.

Wait!

Nick gave a presentation? YEP. He spoke in front of his class. This was not a requirement. This was for extra credit. So Nick didn't HAVE TO do this presentation. He WANTED to do this. Nick spent a week working on this project about food, specifically watermelon.

Here is what his teacher emailed us:

Hi Mr and Mrs Johnson,

I just wanted you to know that Nick did a fantastic job presenting his project today. This was over and above what was required, but it was for extra credit--as well as bringing the watermelon for the class to sample.

He works so hard in my class. I wish I had 100 more of him to teach. I am glad I have the pleasure of having your boys to teach.

Ron S.

So here's to continued success and progress!

Two Autistic Teens Go To Homecoming Dance!

Ryan and Nick are at their high school's Homecoming Dance. Since their chelation in July, both have been talking and conversing quite a bit. This is beyond what I had ever hoped for. Ryan is on a date, and Nick "carpooled" with a girl he knew from kindergarten. They are socially emerging!!! Quite an accomplishment.

More Improvement After Chelation: A Real Conversation

It has now been several weeks since we finished the first round of chelation IVs, and we are seeing and hearing about vast improvements in speech.

About a week ago Nick and I visited Michael, Cody's big brother. Michael had a few friends visiting, which surprised Nick. Like most kids with autism, Nick didn't like the unplanned visitors. I told him we could stay in a back bedroom for a while. He liked that idea. When he got hungry, Nick ventured into the kitchen to get food. While in the kitchen, Michael introduced Nick to Ted. Ted started to ask Nick a few questions on the subject of music, and Michael made sure that both Nick and Ted knew that the other played an instrument. Then Michael left.

Meanwhile, I was in the bedroom reading, and I noticed that Nick had been gone a long time. I went to the kitchen to check on him. I found him talking to Ted. I stayed and listened for about five minutes. They were talking about percussion instruments. I returned to the room to read my book. Time flew by.

"Hey, MOM." I looked up to see Nick. "Mom, I had a long 'conservation', didn't I?"

It took me a moment to understand. "Conversation?" I asked. Nick nodded.

I didn't know how much time had lapsed, but enough for me to read several chapters. I asked Nick, "You've been talking all this time?"

He beamed, "YES! I did good, didn't I?" I agreed.

The next day I found out how long that conversation had been: over 45 minutes. My Nick talked with Ted for almost an hour. Michael said that he heard Ted and Nick talk about music, school, girls, and sports. I was shocked that Nick could talk that long!

There was a time not too long ago that Nick could talk with someone for about five minutes, and then Nick would have to lie down and rest because he was mentally and physically exhausted. Talking for Nick was like running a marathon to an athlete. However, this time Nick was not tired, and he was a happy kid!

Nick had a real conversation!

Chelation IS Working!!!

The boys have undergone their four chelation IVs. The last of the IVs were given a week apart. During the last visit, I was given a "lab kit" to collect urine for each boy, so we'd know what was actually being drawn out of the boys. We are waiting for those results.

July 26, 2011
Second round of IVs. The boys complained that the IV solution was cold. That was it.

July 28, 2011
My sister called to tell me how her husband had noticed how well Nick could communicate. Her husband relayed how he could see Nick ascertaining information and forming thoughts in his head. He could see Nick thinking. Nick made a statement. Then Nick asked questions. Nick spoke clearly and slowly. My brother-in-law answered Nick's question. A few more questions followed. The process was SLOW, but my brother-in-law was amazed to watch the process. I suppose it was like watching the gears work in a huge clock. I was so happy to hear that Nick spoke clearly, and he was on topic. Too often, Nick swallows his words, and his topics are random. PROGRESS!

Aug 2, 2011
Third round of IVs. The boys drank a ton of water all day. No behavior issues. No health issues.

I've noticed that Ryan is talking much more. Of course, he talks about what interests him, but he's talking. Incessantly. Ryan? It was quite a joy. My dad also noticed that Ryan was talking more. It was really weird hearing Ryan's voice so much.

Aug 9, 2011
Fourth round of IVs. The boys vied to be first to get the IV. Nothing else to report.

Aug 12, 2011
About Nick:

Today he had an issue re PE. The good stuff:

1.) Nick was able to articulate his problem. (This is usually the first hurdle--knowing what the problem is!)

2.) He was patient enough for an hour for me to try to solve it. With every unsuccessful attempt, Nick remained composed. I finally found someone who was willing to help, but we still did not have resolution.

3.) Nick was willing to go to class with only the potential of a resolution. (WOW)

4.) Before he went to class, he was able to tell me what he needed to do and in the correct order. He didn't speak as slowly as he normally does when he was telling me this list. It was as if he could think AND talk simultaneously. He spoke clearly, using perfect English. (Double Wow)

Usually, Nick lets the anxiety build until he can't function. He literally can't think, speak, breath... THIS was just the first visit. Later in the day, he actually was problem-solving by himself.

August 18, 2011
Stuart missed one IV, so he received his last IV this past Mon, which was a week later than the other boys. He has been sick since he received his IV on Mon. He's had a fever of 101.5. He ran his system down by working too many graveyard shifts. I don't recommend doing the chelation if the person is not well! I am thankful that the other boys were done last week, and they are doing fine. I am happy!

Overall, I think the chelation has helped the boys. I still want to see what may result over a longer period of time. I am not really sure what to look for, but what I've seen so far is very encouraging. Very Positive!!! My boys with autism are talking!

photo credit:http://www.flickr.com/photos/roodee/

Is Chelation Working?

We started chelation on June 28, 2011. There are different methods to chelate: sprays, pills,and IVs. The IVS are the most expensive, but they are also most efficient, getting into the deeper tissue quicker. We chose this method because we wanted to get as much of the toxins out as we could during summer. Also, if there were any side effects, we'd be able to monitor the kids 24/7. The office staff assured us that there was nothing to worry about. I smiled, but I screamed in my head, "THESE ARE MY KIDS. There's plenty to worry about, like their well-being!!!"

This was to be the first of four IVs given. We spend two weeks building the boys' systems with probiotics and vitamins as well as getting rid of the yeast in their digestive tract.

Here is a brief description as to their behaviors after the initial IVS:

June 28, 2011
Overall, I'm encouraged. The boys are acting normally. No aches, pains, behavioral issues, etc. Initially, their arms hurt. They all consumed a ton of water yesterday and today. They feel fine. I am relieved. The nurse said that if there were any negative reaction, it'd be fairly immediate. All is well. Cameron has swelling at the injection site, but ice will take care of it.

July 3, 2011 As far as Ryan and N goick, they had headaches for a few hours the day after. Cam and Stuart had no headache. It's been 5 days, and I'd never guess that they underwent a procedure. So far so good, ie no behavior issues or serious physical ailments.

July 8, 2011 Today I told the boys we were going to visit a family. The boys protested as they don't like to socialize much. I told them that we'd stay for 30 minutes. We ended up staying 2 hours plus. After the initial ten minutes of discomfort, things started clicking. Ryan talked with a girl. Nick and Cam had fun with the rest of the gang in the pool. When visiting people that the boys don't know, they are usually isolated. Nick is quiet, and Ryan is stoic. Today they were having fun WITH peers. I didn't know my own kids. They are talking!!!

It's just mind boggling. I'm not sure what to expect with each day/visit, but I am encouraged so far!

photo credit: nukeit1 from flickr

Overwhelmed: Understatement Part 2

In part 1 I outlined what my husband and I did to treat our autistic boys. Many years have passed since their diagnosis, and we still find ourselves researching potential therapies and treatments. Our boys have progressed to a point that many think that their autism is mild. I suppose that is good. However, my boys have autism, full blown autism. It is not mild. Their minds still function as autistic. They have learned how to regulate themselves in public. As a family, WE have undergone many therapies. Some are "normal". Some are "alternative". The point is that our boys have progressed, but not due to any ONE treatment. We also continue to hope for more progress; thus, the search continues.

Over the summer we decided to chelate. This has been nine years in the works. We first started testing for toxins that long ago. I was startled when the results included arsenic, mercury, lead, aluminum, titanium, and uranium. There were many more metals, but THOSE metals registered. I knew from my biology and physiology classes in high school that it was not good for those metals to be in a human body.

ARSENIC? I feared the police coming to my door to haul me off for poisoning my kids. Where was arsenic coming from? Where was any of it? We had moved into a new house just a year prior. The schools were also newly built. It was really hard to comprehend, and now we were told that those metals needed to come out.

Chelation. I had never heard of it. In fact, I tried to research keylation, as I didn't even know how to spell it. Very frustrating. Once I found the word, I didn't like what I found. Research showed me a very controversial, dangerous protocol. Liver and kidney damage. Death. Just a few concerns.

As the years have passed, new methods for chelation have been developed. We have continued to test and monitor the toxins in our boys as well. This past set of tests indicated high levels of lead, arsenic, and cadmium in all of our boys. We trusted out doctor's recommendation to chelate as we have done everything else, and the boys' bodies have not been able to eliminate the toxins. Unfortunately, this is also very costly.

We chose to do the IVs, rather than pills or sprays. Over several weeks the boys have received the IVs. I have kept a log of notes, but I am still waiting to see vast improvements. I'm still holding judgment.

photo credit:Mykl Roventine

The Battle Ends: Summer School Results

Summer school ended. Ryan and Nick both earned As in the computer class. Wish it were that simple!

The class was very frustrating for the boys and us. This class consumed our summer vacation time. We spent hours with the boys and their assignments. Ryan caught on fairly well, but Nick was extremely frustrated.

My husband and I shared Nick's frustration, but ours was directed at the teacher and administration. We met with the teacher and principal or vice principal several times. Our main concern was the content of the class, not the speed of the class. The course catalog described an introduction to the computer. Instead, this class demanded a creation of a small business, which entailed business plans and goals and much more. I won't go into the details here, but the frustration was really due to the administration focusing on the speed of the class, not content.

Before I had signed up the boys for this class, I had talked with numerous people at my boys' schools. I talked with counselors, psychologists, case managers, and teachers. They all agreed that this beginner computer class would help my kids throughout high school. It would also be a needed life skill. All were on board.

My husband conveyed this to the summer school hierarchy. The vice principal of the regular high school was called. (I assume this as we never saw her on the summer school campus.) She told the summer school principal that we never spoke with her.

I felt like I was thrown under the bus. After that call, the summer school administration refused to work with us, even though we had an IEP. They simply stated that "this is what we're going to do." We had no more say.

We could have hired an attorney and fought it. However, the energy and money to do so would have been more than we could generate. Maybe the school counted on that. My husband and I decided to spend that time and energy teaching the boys ourselves. THAT is why the boys earned As in that class.

This makes me rethink the home schooling vs public schooling. Parents always remain the primary educators, no matter what!

Feeling Neglected?

Dear Blog,
It's been over a month since I've written a post. I'm sorry. It's not that I don't think about you. In fact, it's quite the opposite. I think of you every night, specifically when I can't sleep. All sorts of notes to myself are written in my mind to write about this or that. Unfortunately, come morning, I'm tired, and the duties of wife and mother call, let alone the doctor on the land line and the therapist on the cell. By the time I have a few minutes to write, I forget all the thoughts from the night before.

Life also has been BUSY. I know everyone has a busy life. It's who we are. Please know that I am not neglecting you on purpose. Sometimes I'll even think that I need to write a really good entry, so I'll do it later when I'll be undisturbed. Again, unfortunately, that time never comes.

So hold on, Dear Blog, and I'll resume writing in a bit... maybe tonight. (No irony there!)

Yea, we'll see!
Sheryl

Overwhelmed: Understatement Part I

When my boys were first diagnosed with autism, I had no clue what autism was. I just knew it was not good. I remember the doctor telling me, "There is no cure." Of course, we first did what mainstream medicine dictated: drugs. For two years our boys were on prescribed drugs. The effect was simple: My boys were drugged up. They did not progress, and the symptoms did not diminish. Also, the drugs were suppose to treat symptoms, not the cause.

It was by accident that we took the boys off their meds. Mike and I thought that the other spouse was giving each boy his med. After several days, we realized that we had run out, and the boys had not received medication during that time. We noticed that there was absolutely NO difference in their behaviors, moods, social skills, etc. We decided not to continue with the meds, and do our own research.

I attended conventions and read books. New vocabulary words entered my head. Social stories, NT, non verbal, therapies, chelation just to name a few. Social story? NT? Obviously, the presenters at these conventions thought that everyone was knowledgeable about abbreviations and the general lingo. I was a newbie. Bummer. I was lost.

What made matters worse was, back in those days, I had just received a computer. I had no clue how to use it, so I started my research via the library. It took a LONG time to get the hang of reading and researching on the computer. I also did not have a lot of time to read. I had autistic boys who demanded my attention ALL THE TIME. And I did work. I was self employed, teaching piano. My husband also worked full time and attended school full time. I was crazy, but that's another story.

I found bits and pieces of information, and we tried what seemed to be easy steps. My husband was with me every step of the way. I had no idea that I was embarking on a prolonged hunt. Now I understand why the puzzle piece is the emblem of autism. There are so many facets to figure out. There are so many variables to consider in the treatment of autism. Back then, there just was not much to find about treating autism; certainly not in one place.

Here is a current list of treatments from Generation Rescue, which did not exist when I first started my search. Seven years after starting my search, I see that I have done just about everything on this list. Only a few remain untouched, and those will be explored in the next few days.

From Generation Rescue:

The following is a list of biomedical treatments to explore with a physician in order to help heal the body:

1. Follow the gluten-free, casein-free, soy-free diet and remove other food allergens.
2. Help the gut heal with: antifungals, antivirals, digestive enzymes, and prebiotics and probiotics.
3. Increase nutrient levels through vitamin and mineral supplements including: quality multi-vitamins and multi-minerals, high-dose B6, magnesium, fish oils and fatty acids, amino acids, melatonin, sulfation, glutathione, and natural detoxifiers.
4. Remove metals and toxins from the body through: anti-yeast protocols, methylation, chelation, Mb12, Valtrex, and homeopathy.

When applied in conjunction with biomedical treatment, certain traditional therapies have been shown to support progress for individuals with autism spectrum disorders.
Traditional Therapies: Early Intervention Programs, Speech Therapy, Occupational Therapy, Physical Therapy, Social Skills Therapy, Relationship Development Integration, Sensory Integration, Hippotherapy, Music Therapy, Neurofeedback, EEG, Auditory Integration Therapy, and Craniosacral Therapy.

Our 21st Anniversary: For Better or For Worse

Exactly 21 years ago, Mike and I took our wedding vows. We were both 25. While we knew that these vows were serious, we never could have imagined what they entailed. I don't think anyone truly "understands" what marriage is, when stating those vows.

Mike and I had five years of marriage before our life with autism began. We then lived through six years of dealing with the symptoms before any of our children were diagnosed with autism. Then within six months, our youngest three were diagnosed with autism. Rather devastating.

Eight months later I was pregnant. I was scared that this next child would also have autism. How much could a mother endure? How much could the parents endure? The marriage? Unfortunately, I miscarried. Again the same questions. I found that as I grieved for our miscarried child, I also grieved for our other kids. Their lives were changed. So was ours.

One of the vows we took included the "for better or for worse". Autism fits both categories. Never did we think that our children would be diagnosed with disabilities. No one prepared us for the financial, emotional, and spiritual burden that specials needs kids bring. We learned via "on the job training".

We have gone through all the ups and downs together. The key has been acceptance. Simple as that sounds; marriage is about acceptance. We accept each other as we are; we accept our kids for who they are. We help each other to live to our greatest potential; we help our kids to live to their greatest potential as well.

To express the self sacrifice on both parts of wife and husband, well, it is impossible. It is just what we do. Our kids have demanded more and more from us, and we give and give. Sometimes, I don't think we have more strength, yet somehow it comes. I give much credit to the power of prayer that we've endured autism. Ultimately, it is because we love each other, that we give--to each other and our kids.

Here's to a Happy 21st Anniversary and many more.

The Battle Begins: Trust The Parent?

The first Monday morning of summer school I went to the school early to talk with the computer teacher, Mr. L. I informed him that my two boys had autism and IEPs (Individual Educational Plans-- big name for the educational goals that teachers and parents set for the child). The teacher said that he would get everything from the computer. I offered my cell phone, and he replied that was on the computer too.

The first week of summer school passed. Nick was very frustrated. He had a D+. If anyone knows Nick, he or she would know something was terribly wrong. This is the child that is the perfectionist. Back in March he had one A+, three As, and one A-. He was NOT happy because he did not have straight As. The A- was not good enough. The next report card showed five As. Nick was happy.

So this D+ was not good.

Ryan had a B. Ryan is the one who can wait til the Earth fades before pulling out a book to study.

I tried to figure this out. I asked the boys several questions. I received some conflicting answers, but what was clear was that the special accommodations that were listed on the IEPs were not being implemented. Nick and Ryan are suppose to get extended time on assignments and tests. That was not happening. Nick needed that time.

The following Monday morning my husband and I showed up with copies of the accommodation pages from the boys' IEPs. Mr. L refused to accept the pages. He said that, since these papers did not come from the administrative office, he could not accept them. There were legalities involved.

I was stunned. NEVER in my life had a teacher refused these papers. In fact, teachers usually expressed gratitude, "Thanks. It usually takes the office days or weeks to get these to us."

Mr. L asked me if I understood. The Mama Bear in me challenged him, "No." I took a breath. "No, I don't. I've never had a teacher question my integrity before." I had to restrain myself...

My husband and I walked to the administration office, and we talked with the principal. She said, "You need to understand that we have 1300 students here. It's going to take time." I bit my tongue.

The next day I made an appointment with the vice principal and the teacher. The vice principal, Mr. Z, was a teacher that knew from Nick's junior high. When we arrived at the classroom, Mr. L was busy at the computer. We sat down. Mr. Z asked if I brought copies of the boys' IEP so he could read them. I laughed. Here is an administrator asking ME, the untrustworthy parent, if I had copies. He couldn't get copies from the computer in the administration office? He was going to TRUST ME, the parent? How daring!

The meeting was successful, but I couldn't get over the irony of the teacher vs the vice principal. One refusing the IEP from me, and the other wanting a copy from me.

Just another day in the life of being an advocate for my kids in the school system!

photo credit:TI CC-40 (Set: 30)

Summer School Adventure

For the last two weeks my teens with autism have been in summer school. It's a four hour course, four days a week, for four weeks. It's the equivalent of a semester of school. I asked Ryan and Nick if they wanted to try this class. My hope is that their regular school year will be less stressful by taking a required class over the summer. They will be able to focus on one class, which is much easier for kids with autism to do.

I also have an ulterior motive. Ryan and Nick are very different, and I hope that their skills will benefit each other. For example, Nick is a perfectionist. He will study until he knows it, even if he fills himself with anxiety. No breaks. This sounds like a mother's dream; he has an incredible work ethic. However, he gets chest pains, shortness of breath, and headaches. Not good.

On the other hand, Ryan is laid back when it comes to studying. There is always tomorrow, even if that final is tomorrow. Ryan has little concept of time. If there is a worksheet to complete, he can do that. There is a definitive beginning and end. However, studying? NOT going to happen unless he is prompted by me.

Another idea is that Nick, who is very social, will enable or inspire Ryan to talk. Nick has a difficult time talking, but he's not afraid to try. Ryan can talk quite well, but he prefers to not engage in conversation. Nick will self-advocate; Ryan will not.

We'll see how the two compliment or compete with each other.

Photo creditPargon's photostream (408)

A Guilt-Free Mother: Fantasy or Science Fiction?

I just read a book. That in itself is an accomplishment because finding time to sit and read really does not exist with a family of teenage boys. Seriously, with all that has been happening in my life, I thought it was time to read this book that a friend gave to me years ago.

The book, Guilt-Free Motherhood by Joni Hilton, is an easy read, and it offers typical, common-sense advice. However, I found that other moms simply laughed when they saw the title of the book. I have to agree. Is any mom ever guilt-free?

One friend quietly queried me, "What genre is it, fantasy or science fiction?" At first, I didn't know what she was talking about because she asked so softly. She glanced at the book. AHHH! I replied, "Both." We laughed. After a few minutes, I corrected myself. "It's a comedy." She thought that was a better description. My conclusion is that trying to be a guilt-free mother is actually all three: fantasy, science fiction, and comedy.

What other job requires relentless imagination to solve problems? What career demands unlimited patience to overcome obstacles? What profession necessitates an endless sense of humor to relinquish perfection? Motherhood entails this and so much more!

One comment in the book is worth mentioning. The author advises to let kids know that I enjoy what I do for them. Basically, if I resent giving my time and effort, it isn't a gift of love. I took this further, that this gift can also be rejected. Sometimes my kids don't want what I've done for them. That is a hard pill to swallow, especially when I've sacrificed to accomplish that task. However, that is love--a willing sacrifice for another. It's also a choice for the other person to accept it or not.

I also think that guilt is not all bad. Guilt can keep us moms on our toes. Just like I try to teach my boys that they can learn from their mistakes, so can I. Then move on. Don't dwell, but do learn.

It helps to have some room for fantasy, science fiction, and comedy in motherhood!

I Am A Frog?

Another mom of a special needs kid recently compared me to a frog. Really. She said that there is this anecdote of a frog in a pot, and I'm the frog. ?? I'm embarrassed that I had to look it up. Here is the story:

A live frog is put in a pot of cold water. The fire is turned up. Unless the frog jumps out, the frog is unknowingly cooked.

So I am the frog. I have been experiencing some heat from the fire of life, and I am aware the fire has been on. I can't jump out of the pot, as that would mean leaving my family which is not option. How do I survive this boiling pot of water?

The only conclusion is to get a heat-resistant lily pad! Now I have the challenge to figure out what that lily pad is in reality.

photo credit:jronaldlee

Angels or Hellions?

I gave birth to the sweetest, cutest kids on the Earth. They were angels, or so I thought.

They are growing up. Not so cute and sweet anymore. Hellions? They back talk. They decide when to obey and when not to. Or do they?

One of my sons who will not be named decided to try the above scenario. It did not work. My son got angry. Unfortunately, I did too.

After we both took time away, I sat my son down. We talked it out. We both apologized. Then I explained why the Good Lord put the fourth and fifth commandments so close together. When children forget about the fourth commandment, which is honor your father and mother, parents can't kill their offspring, as the fifth commandment states--you shall not kill, even though the parents might be tempted.

My son got a laugh, but he understood. Parents are human too. We can make mistakes, just like kids. The point is to keep trying our best, and learn from our mistakes. Keep going. Keep loving!

photo credit:treasureofthesea

Consoled By A Little Fat

A mom must remain optimistic. A sense of humor doesn't hurt either. Sometimes kids, even with autism, unknowingly provide opportunities to laugh.

Case Study:
Over the last six, stressful months, I have put on a few pounds. These pounds are definitely not needed nor wanted. I voiced that thought. My son, Ryan, heard me. He tried to console me, "Mom, you are not REALLY fat. You're just A LITTLE fat." I was not sure how to react. He was sincere. He spoke the truth as he saw it. I ended up laughing.

Here is an autistic teen trying to make me feel better. Of course, I would have preferred no mention of "fat". I had to laugh and go with it. I also noted that Matt is developing empathy in a relationship; that is not typical of many kids with autism. So I applaud Ryan.

Mixed-Sorted Laundry

Nick surprised me by doing the laundry yesterday. I expressed my gratitude, and I had to suppress a giggle. I hope I hid my shock. Why would I have gratitude, giggles, and shock? Well, Nick did the laundry!

Last April I worked a seasonal job, and I asked for someone to take the responsibility of washing clothes. Nick volunteered to do the laundry. I taught him how to sort by colors, which temperature to use, and what each cycle meant. I showed him how much detergent to use. He did quite well after several practice runs. While I worked, he did fine.

Well, several months have lapsed.

Yesterday, he sorted the clothes by dark colors, whites, and towels. I watched him do the first load. He picked the towels. He tossed them in the washing machine. He put in the correct amount of detergent on the correct cycle. YEA. He remembers! All my concern faded quickly, and I left.

About an hour later, Nick announced that he had switched the loads. Everything was going smoothly. I smiled. I could focus on other items demanding my attention.

Another hour lapsed, and I walked by the laundry room when Nick was switching the current load from the washer to the dryer. I noticed a mix of white and dark clothes coming out of the washing machine. ??? I saw him sort the clothing. What had happened?

Nick explained that he put in the white clothes, but there wasn't enough to fill the washer. He knew that he could only run the washer on a full load, per my instructions. Consequently, he put in the dark load to fill the machine. The whites remained on the bottom, and the dark clothes were on the top. They were still separated. Really?!

From his perspective, yes.

He had sorted the clothes. He followed Mom's instructions to not run the washer unless it was full. He did as directed. Literally. Nick was proud of himself!

Yes, Mom could scream, laugh, or frown. I chose the laugh.

I did explain that the reason for sorting is to NOT mix them in the machine. I showed Nick how to change the water level in case this ever happened again. I had to rephrase the instructions of the "full washer". TRY to run the machine as full as possible. If it isn't full, either wait until there are more clothes, or switch the water level.

Only time will tell if this lesson is learned.

Life with teenagers who have autism. It keeps me on my toes. Definitely need to keep a sense of humor and optimism.

photo credit:Average Jane

Do Not Worry--Easier Said Than Done

Matthew 6:33-34

³³ But seek first his kingdom and his righteousness, and all these things will be given to you as well. ³⁴ Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

This is my favorite passage out of the bible. It answers all worry and strife.
First, seek God. He made us. I just wish He gave us a roadmap in plain English, especially when it comes to raising our children--with and without special needs. I guess that would be too easy, and that would not make us seek Him out.
Side note: If it's any consolation, a line in a movie made me feel much better about raising kids. Paraphrased, in all the history of mankind, not one child has been raised right. (Mrs. C. please help with the name of that movie, starring Jimmy Stewart.)
Second, God will provide us what we need. We may disagree with the timing and with the things required, but He will provide. I think this is the hardest to accept.
Third, it says, ..."do not worry..." How much effort and time are wasted worrying, and does it solve anything? No. I think moms are wired to worry, but we'd be more effective if we overcame it. Sleepless nights spent thinking about something that we can't change only produces black circles under the eyes and crabby attitudes. Of course, that is easier said than done.
Here is more of the passage:

Matthew 6:28-34

²⁸ “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin.²⁹ Yet I tell you that not even Solomon in all his splendor was dressed like one of these. ³⁰ If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? ³¹ So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ ³² For the pagans run after all these things, and your heavenly Father knows that you need them. ³³ But seek first his kingdom and his righteousness, and all these things will be given to you as well. ³⁴ Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Footprints with a Twist-Part II

There is no doubt that the imagery and faith conveyed in the poem, "Footprints in the Sand", are beautiful, personal revelations by the author. I am positive that many people have found consolation and hope via this poem. In fact, I have found inspiration by reading this poem in times of difficulty.

So why do I say my experience has been different from the warm and fuzzy ending? When I have spoken with people about this, I usually get a laugh and a comment, "That's twisted." So be warned.

When I have been carried, I have not necessarily gone quietly. I was probably carried in a fireman's hold because I was kicking and screaming. I could have been carried, well, dragged which would have left a stream of lines and footprints, indicating I was trying to run away. I was carried like a rebellious child throwing a tantrum because I didn't like what was ahead of me. I didn't want to face it. I didn't want to deal with it.

It? What is "it"?

I certainly didn't volunteer to be a mother of two autistic teens, let alone of four kids with disabilities at one point. I didn't want to mourn a child lost in a miscarriage. I could list a myriad of issues and problems. Alas, everyone has things to handle, and everyone's ability to do so varies. So who's to judge what is a hard life or who's problems are bigger?

I like happy endings. I root for the underdog. I like things simply stated. I acknowledge what is left unsaid. Some things just can't be expressed through words. Both love and pain make us grow, whether we want to or not. The only solution I see is trust in the Good Lord, whichever way he carries us. It's an act of faith that gives me hope.

Footprints with a Twist-Part I

Most people are familiar with the poem of "Footprints", and the usual reaction is a favorable one, "I really like that."

I disagree.

The end of the poem says that the Good Lord was present, actually carrying the individual at the lowest part of his/her life. That is the warm fuzzy-ending that makes everyone happy. Note that I am not disputing it. I have been carried many times, probably more than I know.

One thing is missing: how is the individual carried?

I suspect most people would envision a warm envelopment between a loving parent and child. I can easily see a father's hug shielding his child from the world. He carries his child effortlessly. He comforts his child, assuring that his child is protected. No harm will come. No hurt. His child is loved. His child needs to know nothing more, but His love.

My experience is radically different.

photo credit: almostsummersky

Footprints in the Sand

Footprints in the Sand

One night I dreamed I was walking along the beach with the Lord.

Many scenes from my life flashed across the sky.

In each scene I noticed footprints in the sand.

Sometimes there were two sets of footprints,

other times there were one set of footprints.

This bothered me because I noticed

that during the low periods of my life,

when I was suffering from

anguish, sorrow or defeat,

I could see only one set of footprints.

So I said to the Lord,

"You promised me Lord,

that if I followed you,

you would walk with me always.

But I have noticed that during

the most trying periods of my life

there have only been one

set of footprints in the sand.

Why, when I needed you most,

you have not been there for me?"

The Lord replied,

"The times when you have

seen only one set of footprints,

is when I carried you."

Mary Stevenson

Copyright © 1984 Mary Stevenson, from original 1936 text, All rights reserved

Perfect Hope

Do not anticipate problems with apprehension, but with a perfect hope that God, to whom you belong, will free you from them accordingly. — Quiet Moments With Padre Pio

photo credit:DieselDemon

Do Not Be Anxious About Anything

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. The peace of God, which transcends all understanding, will guard your hearts and your minds in Christ.

Philippians 4:6-7

Worry. Anxiety. Concerns. Problems. To all of them I say, "Ick." Who needs them? Nevertheless, we get them, whether or not we have special needs kids.

I know we can decide to be happy or not, but always being an optimistic eludes me. Sometimes screaming just is easier. Or being totally silent.

There are a few biblical passages or famous sayings I have found that help me get through those moments when I am less than good ol' Pollyanna. I try to focus on one for a few minutes each day, usually in the morning before the chaos begins. That translates into "before the kids get up". I am not a morning person, so I'm only up a few minutes before the herd.

I have had several moms tell me that the above quote from Philippians hits home. It's part of my "email signature" right now. I don't know how many people actually read it. I do know that some have found inspiration from it, just like I did.

So for today, it is still one moment at a time, trusting Christ will see me through. Therein lies peace.