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