Extremes

There are so many mysteries around autism. In my experience as a mother as well as a therapist, one of the hardest things to deal with is the extreme differences in behaviors that are often hard to predict.

For most of Ridge’s life, I expected resistance and complaining when we went anywhere- school, grocery store, trips, etc. The limited food interest was a constant problem too but then every now and then, my son might try something new and like it! Those moments were great but it would make me think that he COULD act differently more often.(And I would feel manipulated)

As a therapist, I would take data on the time it would take to start and complete homework. I tried positive reinforcement, prompting, and behavioral contracts. My data would show months of noncompliance with very little change and then one day, he decided to stop the fight and did his homework immediately and without any assistance. I wanted to see a progressive line of improvement but this is not how it went. I shared my data with my ABA teacher and he said, “Asperger kids blow our data and don’t follow along the expected course.” You don’t say???

This is confusing to other people as well. Teachers often judge my son as “able” and so they seem to get angry at him when he does not comply. Family members are confused as well. I felt that they often thought I was the cause. How could such variation be possible without clear changes in the environment or the plan? (It must be the mom!)

How many of you have been questioned why you put up with these behaviors? How many times have you heard that a good spanking would stop it? It is so aggravating to hear stuff like that because although maybe they want to help, they don’t understand the situation and are basing their suggestions on the assumption that we are at fault and that corporal punishment is the cure. 

I have come to the conclusion that especially Asperger folks need to feel in control and not coerced. They are so intelligent and quickly respond with counter control measures when they feel pushed. Schools are based on rules and routines that may or may not have legitimate reasoning. In fact, why do most schools require a silent lunch? Shouldn’t we encourage positive social interaction in a natural situation? I know kids get loud but the constant policing of noise levels makes me nervous too. In a way, I don’t blame them for pushing back against stupidity.(But , we all have to learn how to blend in somewhat to navigate the world.)

At home I have seen wild variations in behaviors without any commands whatsoever.

Earlier this week, I picked up Ridge from school and headed to the CrossFit gym as planned. He looked angry and  reasoned that he needed to go home because he had an end of year English test the next day( March is the end of the year?) I was struggling to see how the afternoon class would interfere with the test the next day and took him anyway. Once we got there, three athletes were completing a competitive work out for the CrossFit Open Games. We cheered on the amazing display of strength and endurance. CrossFit is a very close knit group where cheering for others is normal so he was used to this. Suddenly, he was out of his “funk” and when they finished, he decided that he wanted to do the same workout. The coach tried to suggest that he do the scaled version but he said he wanted to do the same workout that they had done with the “prescribed” weights for an adult male. (I did not know at the time that his dad had bet him $20 if he could beat his score.)

The next 25 minutes was grueling to watch as he threw up 95 pounds and hit the ground and up again to perform countless burpees. He was so exhausted but at the last minute he gave it everything and beat my husband’s score by 6 seconds. He stumbled outside, collapsed and threw up.

I was afraid that he would end on a negative note and never want to come back but then one of the men came over and congratulated him. He told him, “Ridge, you gave a tremendous effort and it reminds me that I can do more too. You are raising the bar for all of us. Great job, man!”

Maybe that is tricky part – finding the true motivations that our kids are working for. Thoughts are private events that we can’t observe like outer behaviors.

All I can say, is that I have seen amazing changes in my son. Often times it has to do with a person that he feels comfortable with that has encouraged him.

I have become a role to him that is more than a mom. I am often the cook, organizer, clothes washer, planner, checker, preparer, motivator, problem solver and other executive functions for him. I am more than a personal assistant though.

I have been pushed into roles I did not want. Advocate, fighter, mystic, and survivor. Most of us have become she-wolves in digging deep for answers that are not apparent.

“Ahhwooooo!!!!” to all my sisters in this pac! We are not alone in the wild ride!FullSizeRender.jpg

Can ASD Make You Sick?

Several studies have shown that parents of children with autism experience more “high aggravation and rage” than parents of any other special needs. There are “unique stresses” with our group.

Yesterday,I had my first mammogram since my cancer treatments started about 2 years ago. Breast cancer does not run in our family and advanced stages of rare triple negative breast cancer is very serious. I know three other moms of children on the spectrum that also have developed serious health issues. This is not a coincidence. The stress is real and I believe that this leads to a higher risk of disease.

Like many of you, I became a very vigilant mom in order to help my son. I studied various theories and read research. I was guided by others to look into Applied Behavior Analysis and hired a therapist. Then we hired a speech pathologist and an Occupational Therapist. Of course there were many doctors-the pediatricians, the developmental pediatrician, the dyslexia specialist, the neurologist, the cardiac pediatrician, the allergist, the chiropractor, the psychologist and the list goes on and on…. Just managing my son’s appointments and shuttling him around required a great amount of time and energy.

My career as a teacher had to end.

I did not want to quit. It was my outlet to see other people, get a check , and feel appreciated. Dragging my son to various therapies and working with him was an uphill fight. He was aggressive, violent and defiant. My husband was not on board with the ABA and often sabotaged the plan. I struggled to find answers and luckily I met a few moms along the way as well as my behavior analyst that kept me sane. My mom witnessed one of my son’s daily melt downs and she passed out. She told me that if she had had a child like him, she could not have dealt with it. (I told her that I was not given a choice.)

I heard the story from another wonderful mom of her going to an autism support group. The ladies were introducing themselves and sharing their children’s diagnoses. She said that her son had Asperger’s and one of the group members said, “You are so lucky!!! Your son just has a few behavior skills to learn!” My friend hid the bruises on her arms and left the group.

When you throw in the responsibilities of other children, meals to prepare, and household chores you have galaxies of more issues and stress. Most of us feel guilty for not being able to give as much to our other children.

Siblings are often jealous that they are ignored or expected to help more. I made the mistake of trying to accommodate them too much. I found myself exhausted , angry and depressed. I quit going to the gym regularly because it was too hard. I needed to sleep when I could but that didn’t seem to help a lot either. I tried medications but they seemed to make me worse. My ship was sinking and it seemed that no one in my family could swim. My dog paddling around was not enough to sustain us.

Fighting the school lead to a major distrust and feeling of isolation. I could not go to church services with a child acting out. Joining community activities was nearly impossible. Just going out to eat was a huge challenge.  The only thing left-isolation.

My life as I knew it ,was gone.

Somehow I started reading novels out loud to my son and when he finally allowed himself to delay his anger and fear for a chapter or two, we were able to see patterns in the stories and then he could not get enough. I would read from sunup to sundown and be totally hoarse. But, something was changing and I just went with this new thing. I had to rebuild my life with lots of new things.

Eventually all the work was making progress and my son was able to handle school without the daily dramas and fights. We moved to Texas and thankfully my son has continued to be successful even in public school. We don’t have any more specialists.

The years of stress had taken its toll and when I was diagnosed with cancer I was very angry. How can the work of being a super ninja mom, sustaining the family under fire, and battling the system for my child’s rights end this way?

There was an old country song that said, “Work your fingers to the bone, and what do you get? Boney fingers, boney fingers!”

If you can relate to any of my story, please know that you are not alone. You have not done anything wrong. “The struggle is real.” takes on new meaning for us.

Yesterday was terrifying because they found something in the mammogram. Even after an aggressive schedule of chemo, a modified mastectomy, 7 weeks of radiation, daily meditation, eating healthy foods, and strenuous exercise -something was amiss. As they worked the ultrasound, my body started to shake and I felt myself preparing for more bad news. This time I wondered if there would be no more fighting. I was pretty numb when the radiologist announced that it looked benign.

My thoughts are with the other moms that are on this path. Maybe God can use me to help someone else. This is the message I hope to spread :

Take care of the care giver!

The message is not enough. The WAY of taking care of the care giver is the real puzzle to solve.

I know that you have read articles about taking care of yourself first, setting limits, keeping balance, focusing on gratitude, joining support groups, getting help from professional mental health counselors, yoga, mediation, and spending time with hobbies.

These things are helpful BUT this knowledge is not enough!

I am working on a game that will reinforce the behaviors you need in order to navigate the world of Aspergers with a more positive, powerful and enlightened center of being. Yep….that is my goal. It is coming into reality and I am excited about sharing it!

For now, please know that your work is not in vain. There is a higher purpose than what we may not be able to see at the moment. We are sisters bound together by common struggles in a new world. We are pioneers. Lets play together to survive and thrive!

You are more than you can even imagine. Please accept my respect and love for who you are! A new day is dawning…

This was the card my daughter made for me two years ago as my chemo was completed:

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Perfect Day

Yesterday was about as perfect of a day as I could imagine. I am trying to sort out why it went so well and I am wondering if part of the reason was the contrast around it.

Earlier this week, I took out some time to groom my horse. He has a little curl in his main and it always gets ferocious tangles. I worked on it for about an hour and then had the idea to add coconut oil to help untangle the mess without ripping it out. Another hour later, he was tangle free and I was happy although covered with sweat, mud and horse hair.

I had not noticed that the left over oil had melted and gravity had sent it right over to the edge of the table at the exact spot I had left my phone for safe keeping. My plan had failed and coconut oil had seeped under my case. The phone still operates but the screen is dark except for the very top part.

The next day,I took my daughter for a hair cut and debated about what to do with my phone. I have started to depend on it for texts, internet use and email throughout the day and not being able to use it was frustrating and freeing. I read a book as I waited for her.

I stepped back to see Maddie in the chair with her beautiful long hair cut off and being stepped on the floor by the stylist. My stomach turned and I felt myself falling into a terrible emotional spot. My rational mind was saying that it was just hair but my heart hurt. How could such a beautiful thing by thrown away and not valued?

Maybe since my hair has never grown back completely since my chemo, I have more of an appreciation for hair. Maybe she was tired of brushing it and keeping out tangles. It seemed worth it to me. Neither she nor the horse seem to care anything about their beauty. It is all a projection on my part. It is hard for a parent to accept that our children may not want to be who we think they are.

Yesterday was different. As this was Maddie’s last day with us , we had decided to spend the day together. I planned out a few reinforcements to entice Ridge with-mainly Subway sandwiches and a large Sprite.

We worked out at Colt’s CrossFit, had a fun but not very healthy lunch, and then headed to Guadalupe State Park. I had packed some fruit and we had some rafts although the river was still pretty cold. Ridge has been there a few times before and so he was less anxious. Luckily it was not crowded and we settled on the grass by a tree. Before long we had eased into the cold water and enjoyed picking out pretty rocks. Ridge fought the current and threw rocks. The kids laughed as they made fun of one of my teacher’s sayings “don’t fight the river” they had heard on a cd a hundred times.

We noticed the bluebonnets and other wild flowers popping up and rested in the sun.

We went home and cleaned up, had supper and headed to see Zootopia (of course with candy and popcorn)and a final trip to Walmart. It was the first day I can think of that we were together all day and actually had fun!

Even with all these activities, there was no complaining, no melt downs, no anger… There was a bit of resistance at first , but then it seemed that Ridge made up his mind to have fun and we all had a great time.

It seems that resistance has been a major theme in our lives for so long that I forgot what ease and freedom were. One person’s problem becomes everyone’s problem in a family.

Life with autism can become a very tangled mess. Regular maintenance is best to fix issues before they get too big. Sometimes you may need help but that often leads to more issues. In the big scheme of things, those tangles may mean nothing. I hate to admit that my work may not have been needed.

For me, having a plan helps. Just a positive expectation is not enough. Planned reinforcements are needed at times for everyone to keep moving towards the goal.

The river keeps flowing wether we float along or we fight it. I am tired of the fight. Maybe my rough edges have been tumbled down some. My goals are changing too- peace and happiness are more important than anything else.

The river is life – there are times when it is scary. We may be able to navigate it but never completely control it. It passes quicker than we can understand. Don’t let the tangles keep you from seeing the bigger picture.

Inclusion

As a teacher the term “inclusion” meant that a special needs child would be in your room. This could be with or without an assistant. Sometimes this worked out well and sometimes it was just a forced situation that didn’t work at all. 

For the child , this can be stressful or if done correctly it can be meaningful. There are so many factors to consider – if the child has support , a friendly environment, the demands of the situation, noise level/energy, structure, etc.

In a few circumstances, it is best to work with highly sensitive children alone or very small groups until they are ready .Forcing them into a loud and chaotic environment will likely trigger many behavioral problems.

Most children do benefit from inclusion however. The teacher, therapist and parent must be very careful to set the child up for success. The other students watch to see how the teacher especially accepts , tolerates , or rejects the “special child”. I have seen examples of the child being treated like a celebrity and almost overly celebrated. Sometimes the child is allowed but pretty much ignored. Sometimes the child is outright rejected and the teacher reacts by making war with the child and parents. 

The best cases I have seen is where there is good communication between all involved . The child needs support, the teacher needs support and if the special Ed teacher and therapist work together it can be done. There must be a willingness to really listen and prioritize the needs of the child. The classroom teacher is responsible for many and yet sometimes it is that person that ends up creating and implementing the extra support plan. 

As a teacher, I found that the parents were my best source of support and ideas. However, I know a couple of special Ed resource teachers that are as good as any BCBA I know with writing good objectives, taking data and creating a tailored behavior plan. 

As a parent you are not there to implement anything. The best you can do is find a school that has responsible, qualified, and kind teachers. Create a positive and open communication with your child’s special Ed teacher and praise them every chance you get. Find out what they actually do for your child and let them see how you want success for everyone.

If you start getting those annoying tattle tale like emails of what your child has done wrong every day at recess, PE, or the cafeteria, call a meeting. This is not what inclusion should be . It is a sign that the child may need to have more structure in place or maybe avoid those noisy unstructured activities until they are ready. 

Throwing a child into an environment and expecting them to naturally adapt is not a good idea. The sink or swim mentality may work if you came in as a swimmer but most of our kids need to start with floaties, a coach and a lifeguard. We must protect our children from drowning. We must teach them to swim and we may have to start in the kiddie pool. The best case scenario is that they learn without fear and enjoy swimming. Eventually we all get thrown in but hopefully we can teach our kids how to navigate the pool with successful progression. You can’t get there by never getting in the water either. It is a big pool out there – lets do our best to prepare our kids !

Mental Alchemy

Alchemy-a seemingly magical process of transformation, creation, or combination.

Ridge loves melting metals. He has successfully cast objects made of aluminum, copper, and brass. The metals require differing amounts of heat. He has learned how to do this from YouTube videos. He likes to skim off the impurities that rise to the top as the metals become fluid. He uses great care in handling the hot objects and has learned patience as time is an important factor. Once the metals are liquid like, he pours them into molds and allows them to solidify again.

I see this same process in his own “seemingly magical process of transformation.”

Six years ago, I picked him up from his bus stop on March 9. He told me that he had an “awakening” at school. He described how he was thinking about his thoughts and behavior and suddenly it dawned on him that he could control his growling and anger. There had been no diet changes or medication and I was struggling to find what had stimulated what seemed to be a sudden neurological change. It may have been a combination of factors-being in a new school, reducing demands and heavy doses of ABA seemed the perfect combination for him to start anew. From that point on, he made rapid changes in his behaviors as well as jumping three grade levels of reading in one month.

Maybe the “heat” was the stress of extreme meltdowns and failure that brought out many “impurities”. The combination of consistent reinforcement and practice helped to him to become a more socially acceptable and functional person. Time and persistence has continually shaped his behaviors and thinking.

It is a constant process of refining and transforming as he exceeds expectations and recalculates to other goals. The amazing thing is that he is self managing more and more. He knows this process. He still likes having help but I can see that my job is more of a cheerleader than a coach. Yay!

Happy Awakening and Re-birth Day , Ridge.

 

 

Ouch

Once bitten…

Fear is an excellent tool for survival. It gets us out of danger and makes us think before actions in order to protect the body. Spirit is beyond the body and has no need for fear. 

Our egos love fear because it guarantees jog security.

We have a choice however and don’t have to live at the whim of our worries and fears. Spirit wants you to live with joy and peace! 

This may sound good in principle , but I am not sure if I stay in joy and peace all the time. Yesterday one of our big dogs bit the littlest one. “Winnie” was bleeding and crying and an emergency vet visit was required. The whole scene was dramatic with blood, crying and hysteria. Ridge loves this little dog and seeing her in pain sent him over the edge. (The vet bill sent me over the edge- but at least they took VISA.)

I am so thankful that Ridge has empathy with humans as well as animals these days. Winnie got stitched up and slept in my arms all night. She “told” Ridge all about her pain this morning and wagged her tail at the same time. He assured her that she would be ok and went on to school.

The dog that bit her came in and she wagged her tail. Unlike with people, dogs tend to live in the moment and don’t carry the burdens of the past.

This afternoon, Ridge told me that the veterinary office demanded payment up front because they have had many times that an animal is treated and when the owners get the bill, they just leave-abandoning their pets. He was very angry that a person could do such a thing. (I am trying not to be judgmental here.) I told him that sometimes the cost is just too much. Secretly , I was thinking of the times I felt totally overwhelmed with the “costs” of trying to raise a child on the spectrum.

The world doesn’t really follow the rules that we try to teach people. How confusing and frustrating it must be to a person that is naturally rule governed to live with so many “shades of grey” rather than black and white logistical thinking. It is hard to understand ourselves and even harder to teach how every person has an ego that they are operating from from that is unique. Our goals and objectives don’t always match. We do not perceive things the same way even when we are exposed to the exact stimuli. With this lack of unity, how do we ever  do anything together?

This is where I believe Spirit comes in. The highest part of who we are is connected to everyone else. That part is eternal and it operates from a system that is never divided. There are no differences. This energy is expressed in many forms but the basis is love. This is the connection that we share regardless of if we recognize it or not. It supersedes everything that we think we know.

Maybe this is our calling. Maybe “autism” is on the rise because we have to change and grow in order to understand these new people on our planet. They do not learn the same ways that the average person does.  They are intolerant of the toxins of this world. They are born with super sensitivities that demand attention. We can not simply put them in a boxed, one size fits all mediocre education program. Nope- they force us to be more. They are the catalyst that  “bites” our hearts and directs our attention to question and change the world we live in. Answers are coming that will change everything that we thought we knew about the brain, the heart, and our souls.

We all have access to the infinite intelligence that knows the answers. The trick is in removing our blocks to access this information of higher Truth. We are coming together to strengthen this connection.

So, I am sending an open invitation out to “infinity and beyond” to create miracles for all of us. It is happening! Join up!

Step Four-Gifts

Spiritual help is always present. But for me , it was hard to always see and feel. I know that there are reasons beyond what we can understand of why autism is increasing on our planet. I don’t believe it is a curse. It is actually a great gift.

What a challenging thought! I have seen melt downs that make horror movies pale in comparison. I have met families in such deep states of fear and grief that there seems no recovery possible. I have lived through extreme anxiety and depression. I wonder if my stress and worry lead me to cancer. But , yes, I still believe that autism is a blessing.

Here is what Spirit tells me:

You have all the power of the “multi-verse”within. The trick is that your focus will determine your experience. You must become aware of your thoughts. This awakening changes everything because you are then able to choose your path of experience.Your heart will guide you to the reality of Truth. Fear only limits your perception and it is attractive to the ego. Spirit is Love in everything. This does not mean that you should avoid anything, but move forward knowing that Truth will always win. Your role in the dramas of life is to realize your power to choose your reality.

Autism forces you to change. It forces you to question the “what is” and opens thoughts of “what if”. This is a gift given to those on the edge of transformation. Take the hero’s journey and add to the collective good for all.