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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Potty Training David's Way

( For the purpose of this blog, ASD refers to Autism Spectrum Disorder)

Potty training can be a difficult milestone to achieve with any child. But with a neuro-normal child ( what we call non ASD kids) it can usually be achieved through the traditional methods of rewards, sticker charts, and persistence usually within a couple of weeks to a month. I have been potty training David for a year and a half. . .

Potty training can begin anywhere from 11/2 years to 3 years depending on your child's readiness. That is a key word for parents of Autistic children. Although David is chronologically 4 1/2 years his mental development is around 36 months. I read multiple books and articles on potty training and thought I was ready to go. Waiting until David was at the right mental age was one of the keys to his success.

The problem with using traditional methods is that rewards work for neuro-normal children because they feel a sense of pride and accomplishments and ASD children often don't feel pleasure from pleasing their parents or teachers. While children are taught that potty training time is exciting, new, and grown-up it can be daunting and over-stimulating for ASD children. The bright lights, cold seat, the sensation of eliminating themselves can just be a nightmare. They might have difficulty understanding the logic behind the need to go. They are resistance  to change and may become very upset if their is an interruption to their routine.

David would go occasionally over the past year if the timing happened to be right and the moon and stars were aligned properly! He really regressed over the summer when school got out because he didn't have the social pressure of going like he does at preschool. We had David at a private preschool for his 2 year old class. They wouldn't let him enroll in the 3 yr. old class because he wasn't potty trained. At that time we didn't have an Autistic diagnosis only the Sensory Processing Disorder and Language disorder. So I went through the county and had David enrolled in a special-ed preschool for 3 year old at a local elementary school. He really flourished there and they would encourage him to go to the bathroom at school. He would go occasionally and seemed to make progress. We signed him up for their 4 year old program too. His teacher, Mrs. Jeanne, an angel from God, informed me that David was going all the time in class. He was 100% potty trained at school, yet he couldn't go for me at all at home.

We worked for several months in ABA therapy and even signed him up to be on the waiting list at the Emory Autism Center. They have a unique potty training program that's really intensive for ASD kids. Its an intensive all day session, sometimes two, where you drop of your kid and pick him up potty trained. By intense I mean INTENSE. They only accept eight children at a time and  its is an eight month long waiting list. I wanted to have David trained by the time he was in kindergarten and wasn't sure we could wait that long. We had to discover what was the missing link from school to the house.

Then, like the heavens parted and a beacon of light was shining down, we discovered the Peter Potty training urinal. Mrs. Jeanne has baby urinals at school and we thought, maybe, just maybe if we got a urinal he would go at home.....SUCCESS!! David has been completely diaper free for about three weeks!! Even at night!!!!!! The missing link was recreating the environment that he was comfortable going in.

Now we have the pleasure of buying really super cute boys underwear and stopping every twelve minutes to go potty at various stores and wooded areas!

I am so proud of David for achieving this HUGE milestone in his life and just blessed to have a super team of experts at my disposal who work so hard with him.

a $40,000 turkey sandwich

 For the past two and a half  years David has been receiving Occupational Therapy, Speech Therapy, and ABA Therapy. It usually costs around a thousand dollars a week not including gas and travel time. We have had many milestones through therapy. We have seen David grow from using a picture book and sign language to communicate to carrying on conversations at a 30-36 month level! We have witnessed David having to have therapy in an isolated gym to now having good friends work with him that he calls by name! BUT, Today, September 12th, 2012, we had a milestone of gigantic proportions . HE ATE A TURKEY SANDWICH!!!!!!!!! Two slices of white bread, two slices of turkey, and some good ol' miracle whip. I cried as I watched my son pick up a triangle and precede to eat as if he hasn't eaten the same thing for the past 2 years. He has not added a new food to his list in over two years!

sorry its sideways....David eating his sandwich in Ms. Heidi's office

I quietly sobbed as the feeding therapist added a slice of Kraft American cheese to his plate. I watched amazed as he crammed the whole thing in his mouth. I have seen friends make sandwiches and place cheese on plates and always had a pang of regret that i couldn't just do that with him. I had to have perfectly square crackers that weren't to dark or, heaven forbid, chipped. This is just a milestone that I can't even explain how much it means to me. I will gladly keep paying the cost of therapy to see my beautiful boy make these changes and adjust to the life I know he can lead. I hope this is an encouragement to others to not give up but to have patient diligence with whatever you are working to overcome. You never know, you might just end up with a $40,000 turkey sandwich!

First Trip to The Dentist

Taking a child to the Dentist for the first time can be scary for any child, let alone an autistic child. Because David has many sensory issues, I was hesitant to schedule his first appointment. I was afraid of what would happen so I decided that the best way to overcome my fear was to become educated. I started by reaching out to my other mom's of autistic children that I write to regularly, going to my favorite special needs website, and by talking to Davids therapists and teacher.

I found a Dentist office that specializes in pediatric dental care for special needs children. They made sure to only schedule David when there would be no other patients there. They took him on a tour of the office for the first thirty minutes and let him touch and handle all the instruments. They had asked me what were his favorite things ( trains, airplanes, and firetrucks) and made sure to stock the room with them. They let me bring his favorite movie in so they could play it in the TV that was in the ceiling over the chair. It was important to find an office that had a staff that was trained to handle ASD (Autism Spectrum Disorder) patients and could accommodate all of his tendencies

To help overcome his anxieties we started about a month out with working out different scenarios with his OT therapists and his ABA therapists. We play acted that we were at the dentist. We let him pretend to be the dentist on work on our teeth. His teachers at school incorporated books about the dentist into their reading time. We also started driving by the office to familiarize him with the location and doing pop-in lobby visits.

They day of we started off by doing some relaxation techniques that he likes. We did "big breathes" were he places his hand over my chest and mine on his and do big deep breathes until our heart rates were nice and slow.We did some joint compression's and some dancing to get all negative energy out!

He did amazing! Although there were some tears at first, he walked away with a smile! They staff was very helpful and prepared for him. They allowed him to sit upright instead of laying down and he got to show  his favorite firetruck to everyone:) I was so proud of him for allowing them to touch and handle him. He, once again,  exceeded my expectations. It is amazing to me at the things he can handle. I give a lot of credit to the great team of people we have working with him . Whenever there is a situation, they have always stepped in and helped me show David how to behave. I think it is important not only for me to be strong for him, but to have a strong support team behind ME.

Davids eating habbits

David LOVES to eat...as long as you follow his routine:) Spectrum disorder children tend to have many routines that they set-up in order to maintain control in their lives. Although Autism is present from birth, it usually doesn't become apparent until the age of three. They are affected, and can become overwhelmed, by smells, tastes, textures and sounds,

Davids has been diagnosed with a pediatric eating disorder of a non-organic nature. It basically means that there is no medical reason why he refuses to eat, that it is psychological.  David was first hospitalized at the age of 6 months when he had an adverse reaction to rice cereal and again at seven months. I had plans to feed my son organic, home-grown baby food and spent many hours preparing and dollars on supplies to make that happen.  I quickly realize he wasn't going to follow the standard guidelines of introducing food. It broke my heart to throw away all the food i had prepared and frozen. At nine months, David began the first of many blood tests to determine if there were any allergies or medical reasons for his refusing to eat anything other than breast milk. He endured many pricks before they came to the conclusion that there was nothing wrong and diagnosed him with failure-to-thrive. He remained below the fifth percentile for three and half years.

We have come a long way since that first year. David was breastfed until he was three years old and his first food of any kind was pizza (one of his favorites still today). I've  had to get use to the idea that my kid would never eat a peanut butter and jelly sandwich or cheerios like every other kid i have known. I've had to get used to the fact that i couldn't go out to eat with him and order a kids meal cheeseburger. It has been hard to accept but by listening to what David has been trying to communicate to me, we have come up with a great routine that allows him to receive the fuel he needs to keep alive!

He LOVES to eat in the car and actually does his best easting riding around. Sometimes we go to the train or fire station or just drive around the lake. It takes him about an hour and a half for David to eat one meal. Always with a drink in between each bite and constant reminders to finish. He doesn't sit when he eats but wanders around.

He eats:

Chick-fil-a sandwich: cut up in to perfect squares and eaten with a black fork
Cheese pizza : only half way up
Bagel, bacon, egg:  one bagel lightly toasted. ABSOLUTELY no brown, buttered with two strips of crispy bacon and one boiled egg no yolk lightly salted.
Pancakes: he mostly just eats the batter but manages about one pancake down with OJ
Cinnamon rolls: cut up in to fours
Wheat Thins: only the square ones. no broken or curled edges
Banana smoothies: two bananas and whole milked blended and poured in to a green cup. he won't eat milk or bananas separately.

David eating at his favorite pizzeria. lots of room to run around and arcade games!

I get some flack from people who just tell me that if it was their kid, they would make them sit at the table until the food was gone. Ha! David doesn't sit or respond to that threat. He has several times refused to eat for days at a time until he is hospitalized for dehydration for no reason at all. It is not about rebellion but about David feeling insecure in his environment. He has been evaluated at the Marcus Autism Center by a pediatric feeding therapist and is on the waiting list to undergo feeding therapy.

I am proud of how far we have come with him and I celebrate every pound he gains. This post is intended to be informational to the people out there who don't know how many times I have been on my knees begging and praying that my son eats enough to hang on another day. It's for the people who HAVE celebrated and encouraged me along the way and have supported Davids unusual habits. It's for my own sanity!

NIght-Night Time

This is my first blog attempt so please bare with me! I am the lucky parent of a 4 year old little boy named David. He has been diagnosed with everything like  Aspergers syndrome, mild autism, PDDNOS, and ADHD.  He has very many routines through-out the day and night and I thought I might share how our typical day is in the life of raising a child with special needs.

Bed Time: I always envisioned tucking the little angel into bed reading a story and kissing him goodnight. David showed me another way: his way. It starts with an egg timer set at five minutes to ring. That gives him the opportunity to be constantly aware that a transition is about to take place and it won't startle his world by just coming up and saying bed-time. When the bell rings , we go upstairs were we proceed to make sure every toy is in its proper place. Then we move on to the curtains that  have to be completely even on both sides . After that we can climb into bed were he sleeps on his special pillow and with two blankies, usually accompanied by the favorite toy of the day. We then read LOTS of books, sing silly songs and work on getting me out of the bed.! After I am out I have to make sure all the covers are completely even on both sides and pulled all the way up to the top so he can lay there straight as an arrow underneath them, so as to not disturb the evenness of the covers.  I then lay completely on top of him squeezing him tightly till his breathing is slow and even. We call these "big hugs" It helps  him feel in control of his body the more deep pressure he receives. On my way out, I check to make sure the door is at the right angle for him and his cup of water is by his bead. breathe a sigh of relieve that by doing these little rituals for him will allow him to be at peace with himself long enough for him to fall asleep.

This is an hour long routine. But something that I know I have to do in order for David to feel comfortable with his body and his mind. I spend most of my days watching him and anticipating his triggers so i can avoid them and help keep him even keel. I hope to show what our life is like on good days, bad days, and all the little stuff in between. I wan to touch on subjects like eating, potty training, play dates, eating-out in publc, and other life situations that we deal with.

Thanks you,
Amanda