WWE (Wacky Wrestling with Everyone)

"You wanna fight?" is one of Davids favorite phrases. It usually involves a lot of crashing, throwing, spinning, jumping, and "squishes". It is a GREAT technique used to ward of meltdowns.  When I sense a melt down coming on, or David getting frustrated, I start squeezing him tightly and initiate a fight. Sounds kinda crazy, right? A lot of people think that autistic children are sensitive to touch, and they're right! David has HUGE tactile sensitivities but in the opposite sense of what you would imagine. He loves hard, hard touch and can't stand it for someone to lightly touch him. He often shies away from kissing and cuddling (except with me) and hates for people to casually touch him in passing. He will give you a hug, but you better get ready because it is a "take a step back and run full force and jump in your arms" kind of a hug! He loves being spun around in a circle and slammed on the couch. Flipping and jumping goes great after a crash into the bean bag!

Tactile dysfunction can be overly sensitive, under sensitive, or a combination of both to touch. David is considered a sensory seeker which means he is constantly touching, crashing, and feeling objects to gain his knowledge about them. Sensory seekers are constantly getting into trouble for touching things they shouldn't, crashing into people, and generally being rough with objects. The important thing to remember is that they are not trying to get in trouble, but rather trying to get the right sensory input that their body needs.

Davids biggest sensory need time seems to be right when he gets home from school. After I observed this for about a week, I came up with a plan to counteract that meltdown time. I scheduled wrestlers to come over and wrestle with David! I called on the amazing men in my family to dedicate an hour a week to come over and wrestle with David for me. He loves the special attention he gets and the physical touch he craves. It is hard work and very tiring because he is non-stop for a full hour. He doesn't feel pain as much as other children and can dish it out as much as he takes it! Monday and Saturday night is Daddy fighting time. Tuesday is "Uncle Brian" wrestling time. Wednesday is "Uncle Cliff".  I pick up the slack three nights a week. It fills my heart with warmth and love to see these guys enriching David's life. Its a small gesture that will have a big impact on his behavior. He is forging bonds with them (and that is something that takes him a llloooonnnggg time) and whether they realize it or not, they're making a friend for life.

Squishes with Uncle Cliff

"He got me!"

Watching the road for Uncle Brian's car

"he's here!"

"oops... I forgot to take care of me!"

Parents all around the world  have learned how to put themselves on the back burner. You learned how to eat standing up at the counter with one foot rocking the infant seat . You  learned how to function on sleep that comes in two hour intervals followed by hour long nightmare calming sessions, feeding and burping , and sick breaks. You have learned the joy of having an audience in the bathroom no matter what it is you're doing in there (animals included). I think we sacrifice things without even realizing we're doing it. It's just part of being a parent I guess. It becomes second nature.

David requires so much of my energy and time that I didn't even realize I wasn't taking care of myself! I have spent the last 4 1/2 years of my life watching, analyzing, and trying to interpret every sound he has made. Before, when he was non-verbal, I would spend my day just trying to come up with ways to communicate with him and how he could communicate with me. We would have, on average, 5 different doctor appointments/therapy sessions a week for the past three years. So when I saw a picture of myself from last May, right after the Autism Speaks walk, I was shocked at how  big I looked. I knew that I hadn't been putting my health first, but I had justified it by the results we were getting in return with David! The diagnosis was was my only worry, treatment was my only focus, and results was what I worked on.

Here I am with my "simons" girls back in May 2012

The picture that opened my eyes to my weight

So here I am. 5'4" and 176 lbs.Size 16/14 pants and XL shirts. I decided right then and there that in order for me to be at my best for David, I needed to be at my best for me! I had an amazing example (mom) in front of me and slowly yet surely I started running, well walking fast at first! Learning how to control my eating habits and adding exercising into my daily routine, has helped me reach and surpass my goals!

went from a size  16/14 to a size 2 

Went from 176 to 118 lbs! 58 lbs total!

Excuse the face:) went from 36 inch waist to 26!

working hard on toning up and adding definition

I finally have the energy to keep up with him and the drive to work even harder with David on meeting his next set of goals. I feel good, look good, and now can BE good for the one who needs me most:) My main focus will always be my boys, I can't (and don't want to) get rid of that. I do realize now, how important it is for me to be as healthy as possible, so I can be around longer with them. I am excited to be a good example for them to follow!

my cup runneth over..

As I sit here and write this post, I have tears running down my face. Psalms 23 is a popular Bible passage that many people often quote. I couldn't think of a better verse other than Psalm 23:5 to describe my feelings today, "...He anoints my head with oil, my cup runneth over."  I am humbled, awed, and thankful for a God that hears and answers prayers.

At night, David often falls asleep quickly (thanks to medication) and I have the opportunity to observe and cherish looking at him in such a peaceful state. It is during this quiet times that I have taken to laying hands on my first-born and praying for him. Sometimes it' s handing his life back into Gods hands and asking him for his will to be done. Other times, it's interceding on his behalf for healing. Last night, I prayed for a specific request that David would be able to make friends at school.

His teacher confided in me last week that although David was adjusting well to the new class, he had yet to make friends. I think any parent wants their child to not only be healthy but happy. Social skills are very hard for ASD (autism spectrum disorder) children to develop. We work on social situations in behavioral therapy and occupational therapy and have been for two years. I have been to seminars on this specific subject and read many books. We often can't go out of the house for weeks at a time because he can't handle being out in public, other times he does great! Its really a day-by-day situation.

This weighs heavy on my heart because I know how amazing and wonderful he is, I just want everyone else to know that too! He is funny, sweet, observant, and tenderhearted. These qualities are often over-looked in others and the crazy, outlandish behavior is commented on. I think its important to be well-adjusted and not necessarily popular, but at least have some peers his own age that he can relate to and play with, so when his teacher told me he didn't have friends, I was upset.

Today, the day after I laid hands on him and prayed, his teacher came up to me in car-line and told me that David made two friends at school!! Mrs. Albert said that she had been encouraging two boys, Nathan and Chris, who have similar behavior (quiet) to interact with David. She told me that today they actually spoke, ran around, laughed, and played today! MY CUP RUNNETH OVER! Nathan and David walked out today and when I asked him if he had a good day playing with Nathan, he gave me a shy smile:)

I know this road is long and hard. I know there are victories and obstacles. I celebrate each milestone he overcomes and cry over each hurdle. This is just one of the many things I know he can overcome and succeed at! He continues to amaze me at the things he can accomplish and my heart swells with pride! It renews my faith that our Creator is in control over his life and hears our prayers! Please continue to pray for this new friendship and for David to have the confidence he needs in order to make new friends.Psalms 23:6, "For surely goodness and mercy shall follow David all the days of his life, and David will dwell in the house of the Lord forever.Amen"

my sweet David

the HULK!

It seems to me that I am in a constant in a state of observation. Most of my day is spent watching and analyzing every aspect of David's life. Trying to figure out if his medication is working, if he's hungry, or about to have a meltdown. Sometimes he completely surprises me, like the other day, he played with his cousin for five hours straight without any conflict! I was like, "Is it the medicine, a fluke, or just a great day?!" It's hard when he has the vocabulary and mental state of a three year old, yet a body of a five year old. He can't tell me if he likes his medicine or if he's having an "off" day.

The last time I wrote we were trying to decide if we should start a new ADHD medicine called Intuniv. Well, we are three medications past that now! Intuniv worked too well :) He slept 17 hours straight on it! As much as I enjoyed the break, it was obvious that he couldn't function on it. After we took him off that we tried Ritalin, a stimulant ADHD medicine. We received mixed results and after several consultations with his psychiatrists and teachers and four weeks on it, we decided that the stimulant medicine is the right way to go, but we were going to switch brands.

The stimulant gave him the control he needed over his body and movement but the side affects were really hard on him. He would turn into the Hulk! Think tiny angry person (not green, though)! Very aggressive in his tone and language, anti-social to a degree. So here we were back to the drawing board of what behavior do we want to deal with. Out of control behavior, yet happy; or calm and angry. After researching and talking with some other moms, we decided to try Focalin. Focalin is a stimulant ADHD medicine that is in the same family as Ritalin but without all the side effects. First week but we like it so far!

This doesn't mean that he is one hundred percent all the time, and I wouldn't necessarily want that from him! I love his challenges and personality but I do think he needs help with control. He has so much to offer everyone and when his body allows him, is really a sweet and gentle boy. He has had so many accomplishments and I really think we are slowly, yet surely, figuring it out.

He started this semester at school in a regular head-start pre-school class! Twenty-two students, two teachers, and David has his own Special-Ed parapro (facilitator) that works one-on-one with him in class! As nervous as I was, He has stepped up to the plate and knocked it out of the park! His teacher told me that  he is adjusting smoothly and really trying hard to fit in! I couldn't be more proud of him! I'm hoping that he will model some of the behavior from the "neuro-normal" kids and learn how to interact better with kids his own age.

Its a long hard journey, but we are making progress one day at a time:)

here are some photos of him ACTUALLY sitting still (very rare) with some of his favorite people!

Sitting still with "hannie" Anne:) 

Sitting still with "Tio" Uncle Adam 

Sitting still with "Nana" Nancy 

Sitting still with "Grampaw" Grampy Nelson

Making hard decisions

So, as any parent knows, you are faced with making hard decisions about your children's life. As soon as you announce you're expecting, you start getting bombarded with advice on a wide range of topics. Which pediatrician you should use, whether to vaccinate or not, and of course; to spank or not to spank. I think, that as a mom, my greatest fear is that I would make a wrong decision regarding David and his treatment. I am forever questioning the paths I have taken with him and wondering if it has helped/harmed him.

I recently read a book called, The Boy Who Loves Windows by Patricia Stacey. It is about a mother who's son was born with autistic tendencies and her heart-wrenching journey on his treatment and success. Every day for the first six years of his life, she explored and tried multiple therapies, all the while questioning herself. I found myself relating to her worries and concerns about treatment. "Is this the wrong/right one? Should I do more/less of this one? Is he connecting?"

One of the biggest decisions I had to make with David, was the decision to start treating him, not only with non-traditional/traditional therapies, but with medication. David has been in Speech Therapy for 2 1/2 years. Occupational Therapy for 2 years. ABA (Applied Behavioral Analysis) Therapy for 1 year. He sees a Psychiatrist every four weeks and has been seen by allergists, neuro-psychologists, play therapists, feeding specialist, nutrition specialist, and multiple other professionals at various times. He also receives all these therapies at school on a weekly basis on top of his weekly appointments through the private therapists.

We have engaged him in swim lessons to build strength and motor coordination. Gymnastics for balance and control.  I have built sensory areas for him in our house: crash pads, huge box of beans, spider balls, fidget toys, and weighted/compression vests. We participate in Music Therapy (3 months at a time) and a host of other activities.

After much research and debate, I decided that it was time to start David on medication back in February. It was a gut-wrenching time for us and it became very obvious that David needed more help than he was getting in his therapies. This was not a road I wanted to go on, especially since he was only three! I felt like I was failing him. Giving up to early. After talking with his team of private therapists/doctors and consulting with his team at school, we decided to start him on a medication called Risperidone. It is an anti-psychotic that help stabilizes his mood swings. It was like we found the missing key! His behavior was manageable and he was still the same impish, sweet boy that I love!

He's a real "super hero" in life!

Davids mood swing cycles were on about an eight week loop, and the first dose lasted for a couple of months before we had to up his dose. The second dose helped the cycle extend to a twelve week period! Form there it went to sixteen weeks. Clearly, I had made the right decision regarding this step. And then the bottom fell out... About a month ago, Davids mood swings started back up and we just figured it was time for a dosage change. After two weeks with no change, we upped it again. It had an adverse affect on him and things went hay-wire. Uncontrollable crying for hours, screaming fits, and his stimming (self-stimulating regulatory) behavior (head banging, stomping, and hitting/touching everything) went way beyond control. ASD kids do that to retain a sense of awareness to their surroundings like grounding themselves in reality. We stopped having play dates (except with my amazing cousin rachel/cliff and their sweet boy Cade. They really get how to handle him). couldn't eat in public, going to the stores were a nightmare, and school was a disaster. I felt like I was in a prison called home. reduced to exhaustion and tears.

So here I am again faced with two hard decisions. I know we need to find another medication for him as clearly the Risperidone has reached its peak effectiveness with David and I need to decide on whether  to add a new therapy for him called Floor Time.

Floor Time is a program started by Dr. Stanley Greenspan that focuses on engaging the child, gaining joint-attention, through play. I believe it will be a good fit for David but an expensive decision for us. Of course insurance won't cover it, and at almost two hundred dollars an hour (3 hour sessions a week) it would be a big obstacle to take on. And should I drop one of the therapies when I add this new one? Is this to much therapy for a four year old? If i drop one will it have a negative affect on him?

we also are thinking that instead of a mood-stabilizer medication that a non-stimulating ADHD medication would have a better result with David. We have already weaned him off of his Risperidone and started a new med called Intuniv but it made him lethargic and emotional. There is a possibility of adding a stimulating med on top of the Intuniv to help keep him focused and not stimming. I just don't know... It's hard because he can't tell me if the medicine makes him feel "funny" or not and to wean/start a new medication is a month long process.

So here we are at a pretty important intersection in Davids life and I am plagued with doubt and fear of making a wrong turn. I know that out of all the choices we are faced with, we will come out on top in the end. Each decision we have made so far, although challenging, has turned out to be the right one and I just have to have the confidence that whatever we decide it will the right one too. As a mom, you only want the best for your kids and for them to lead healthy happy lives. I pray, and ask you to do the same, that God will guide us and make the way shown on how to achieve this healthy happy life for David.

David my very own "Mr. Incredible"

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