On December 11, 2001, just 2 weeks before my due date, I went into labor. My husband and I were so excited to finally meet our first child we had been trying to have for years. Within hours the excitement turned into worry because there was concern the baby was under stress. Just over 4 hours I delivered an 8 pound 11 ounce baby boy. From the moment of delivery Patrick was whisked away to another part of the room where doctors and nurses were working on him. I remember thinking we did not even get to hold him, not even for a minute before he was taken away to a local Children’s Hospital. The doctors felt that Patrick suffered from meconium asperation and in addition, I had a placental abruption. Patrick was at the hospital in the NICU for just a week and then finally were were able to take our wonderful little baby boy home.
At first we thought Patrick was just colicky, and then he was diagnosed with acid reflux and given a prescription. I remember one day soon after when he was just over three months old, we could not get him to stop crying. After a visit to the pediatrician, she sent us to the children’s hospital for an MRI. It turns out Patrick’s head had grown more than expected in the last couple of weeks and they suspected pressure on the brain. After the MRI, Bob and I anxiously waited in the hospital lobby holding Patrick who at this time was sleeping soundly from pure exhaustion. It is amazing when you watch them sleep and any worries momentarily leave your mind. The doctor eventually told us they did not find anything. They recommended for me to remove dairy from my diet and switch the formula I was supplementing. It seemed to work and in combination with they medicine for the acid recflux, Patrick was a much happier little boy.
The next several months just flew by and we watched as Patrick grew quickly, always off the growth charts. He was the most lovable handsome little boy with blond hair and gorgeous blue eyes. He loved hugs and kisses, Mommy readin to him and most of all playing chase games with Daddy. First rolling over, crawling, then walking, Patrick hit every major milestone on time and seemed to be a happy thriving little boy.
It was about 17 months we started to feel concerned because Patrick was only speaking a few words like mama and dada, ball and car and one day they just vanished. What replaced the words was just jargon and now we noticed Patrick was starting to lose his eye contact with us. Even if you managed to get his attention he would look everywhere but at you. Patrick also started to focus on only toys with lights and he would raise his arms up and down almost like a preacher. We voiced our concerns to the pediatrician along with the language issues. She gave us a referral for an evaluation which was completed at 20 months. The results came back that Patrick was lagging behind in some areas of development (mostly speech) and he just needed some minor Speech and Language Therapy (Sp/L), Physical Therapy (PT), and Occupational Therapy (OT). We soon learned this was anything but minor, and Patrick’s lack of development would soon be his greatest challenge. We started taking Patrick to his therapies, as well as, enrolled hin in an early intervention program two times per week for a couple of hours. Bob and I noticed very little progress, so we took Patrick to a neurologist to have him evaluated. The doctor suspected Patrick just had a language delay and sent us for tests to rule out other diagnoses. We had all the usual tests done: another MRI, and EEG and all the typical blood work. When everything was said and done his Neurologist diagnosed Patrick with Apraxia which is a language nuerological disorder.
At around 23 months we went back for an early follow-up, because we felt Patrick was regressing in other areas of his development and we started to see other odd behaviors. Bob and I had compiled a list of our concerns and handed a copy to Patrick’s neurologist. The list included behaviors Patrick had started to display and lack of development in certain areas that were concerning to us. We had noticed Patrick started to arm flap routinely and he was also walking on his toes more than his flat feet. Patrick would rock back and forth, had no self awareness and really showed no need for anyone around him. He had recently developed a very bad temper and would scream at the drop of a hat. He would not respond to hello or good-bye and even the things he learned he would quickly forget. Theree were signs like he rarely had a solid bowel movement, had dark circles under his eyes and always seemed to be starring at lights or fans and the list goes on … The nuerologist looked over the very extensive list and seemed very concerned. She scheduled a team of doctors to evaluate Patrick over the course of the day. Once the evaluation was over, we were to come back and hopefully recieve some answers.
Once again, Bob and I took Patrick to see the Neurologist and to recieve any information that would help him. His doctor sat down and started to explain that the team had diagnosed Patrick with PDD/NOS. She explained that Patrick did not meet all of the criteria for Autism, but many of his behaviors were in line with the diagnosis and therefor he was on the spectrum. Patrick had the repetative movements, the language delay as well as the toe walking, but he loved affection and did not need routine. She gave us some support literature and told us to continue with the therapies. After many tears, we realized that finally at 26 months we had a diagnosis for Patrick and now that we knew what we were up against, it was time to find the right therapy.
We soon tried different therapies and diets. We had read a lot of the behaviors were diet related so we put Patrick on a gluten free, casin free diet. At first we noticed more awareness, but then that faded and we had al ittle boy that would barely eat anything. We went to a floor-time therapy class that met once a week and Patrick seemed to respond a little bit but still not enough. We went to therapists who administered listening therapies which never worked. We tried many allergists, supplements and the elimination diet which just made him miserable. We even had Patrick participate in an Autism study to help his issue with bowel movements – no luck. Patrick in the meantime was still in is early intervetion program and recieving the ususal PT, OT and Sp/L. Nothing we did seemed to help! I turned to a local autism group called ASK and started to attend meetings. It was amazing the support we recieved and how meeting people in the same situation as us can help so very much. With the guidance of two members, we started to work with Patrick a couple times a week on some of the skills he was lacking. We finally started to see a little bit of progress, but Patrick would soon regress and lose what he had just learned even the week before.
I had read several books and articlese on the sucess of Applied Behavior Analysis (ABA) in children with Autism and started to make contacts in the area. After many calls to the area hospitals and organizations, we put Patrick on a list for an intensive ABA program at a local hospital. The waiting list was over a year long, but we were hopeful we could get him started in an ABA program out of the home. It was amazing how difficult it is to find people ot help with ABA. There are so few people trained and the waiting lists are so long, even for an outsource program. That of course doesn’t even address the cost, none of which is covered by insurance including all of the therapies we had been doinig for Patrick for years.
In the meantime Patrick’s behaviors progressively started to worsen with time instead of improving. We woudl try to curb the arm flapping by saying “arms down”, instead he would turn to hand biting. He would spend much of the unstructured part of his day making sounds and stimming off his bottom lip. His tantrums were the worst of all, nothing can seem more of a challenge than having to pick up a 45 pound child off the ground of a park or store floor. The stares we have learned to deal with, but the behaviors are a constant reminder that even with progress Patrick will still have many struggles from day to day.
In August of 2005 I had recieved a booklet from a friend about the Brent Woodall Foundation for Exceptional Children. I quickly emailed the foundation and after a few emails and phone calls back and forth I was asked to submit a video of Patrick, some medical and developmental records. I sent everything in and was in contact with a therapist several times over the next couple of months. In Novemeber of 2005 is really when Patrick’s future truly started to brighten. The wonderful people at the Brent Woodall Foundation for Exceptional Children came out and immediately started a comprehensive evaluation of Patrick, The Assessment of Basic Language and Learning Skills (ABLLS). They spent the entire day with us explaining how to set up the ABA program as well as how to administer it. It was like someone had turned on a bright light in a very dark room. Everything clicked and Bob and I were on our way to helping Patrick learn the skills he desperately needed.
Within the next few weeks we recieved a copy of the video of the evaluation and training they taped while they were here, along with an extensive summary of Patrick’s skill levels and recommendations. After recieving the letter listing Patrick’s current levels, we were crushed to read Patrick was still so drastically behind his peers. For the first time we felt so overwhelmed we cold not tackle this terrible diagnosis Patrick had recieved just less than 2 years earlier. We decided we could not give Patrick all the hours of ABA he needed on our own, so we decided to hire therapists to help us with the heavy work load of 40 hours of ABA a week. We were able to find a couple of college students as well as a friend that was up for the challenge. We then sat down with each of the individuals that would be working with Patrick and trained them in the principles of ABA, just like the Foundation had done with us. In the next coming months I emailed the therapists almost weekly with questions on how we were running the program. She quickly responded and explained that we needed to change the curriculum.
We have been running the program now for about eight months and Patrick has just about mastered the basic skills. He has learned over 172 tasks or skills and the best part is with review he retains the information. He attends a preschool for children with Autism, receives Sp/L, OT and PT and has between 35-40 hours per week of ABA. There are weeks where I think he is constantly in therapies, but then you walk in the door and see his amazing little smile and hear “hi” in his little angelic voice. This first time he said Mommy (only a few months ago) was like God had given us our child back, even if it was just for a moment. Now he can even tell you his baby sister’s name, Gracie, and he loves to say “I want Daddy” when he wants to horseplay with Dad on the floor. He frequently asks for items he desires and finally started to comment on things he sees or hears. ABA has helped every aspect of Patrick’s life including his biggest challenge, his lack of speech. He now has body awareness, can follow one-step instructions, participates in daily classroom routines and his focus and attention has dreastically improved. He even can tell you his name and how old he is, if you ask. His eye contact has improved and now when you speak to him, most of the times he will look up at you with those gorgeous blue eyes and listen to what you have to say.
i was at the grocery store a few weeks ago with Patrick and Gracie and it seems we always have someone come up to us and ask “how are you little boy?”. Recently, the cashier at our local grocery store asked Patrick how he was and he proudly looked her right in the eye and said “good”. It seems like a small step, but there were many days it seemed something Bob and I never thought we would hear.
Patrick still has many challenges on an everyday basis. His tantrums and stimming behaviors our constant and although he has made huge strides, he is still way behind his peers. We know ABA is a program we will be doing with Patrick for a number of years, but we also know that this is truly the key to making Patrick’s future brighter. Finally, everyday we watch Patrick learn so many skills each day. We are very lucky the people we have wroking with us are the most amazing individuals. It seems almost daily I have to change the program because he has mastered a new skill.
The Brent Woodall Foundation gave us the training and the skills to help our little boy. Without them, we would still be in that terrible place, where as a parent of an autistic child you feel in the dark and helpless. Thank you for giving us hope, training and guideance to help Patrick. Before long, he will thank you himself!