UPDATE: November 18, 2009
Time has a way of marching forward with the uniqueness of each day slipping into the background.
It’s been well over 8 months since I last provided an update about Patrick. The months may have disappeared but Patrick’s continued improvements are very apparent. With an upcoming Pediatric Developmental Doctor (PDD) visit with Dr. Bussey in mid-December, we wanted to share his triumphs with our family & friends.
During the last update Essential Fatty Acids (EFA’s) was being used to increase speech and cognition. Prior to the introduction of EFA’s, Patrick was on a very slight upward trend equaling 6 months maximum per year for each area (speech, cognition). This meant that for each year older, he would increase those areas by roughly 6 months from roughly a base that is 70% below normal. In addition there is no guarantee either that the 6 month trend would continue.
Before I discuss the results achieved for 2009 by Patrick, there is something that has happened, that in our world is even more dramatic and life changing for our home and care with Patrick. I can’t explain why it occurred, there’s no connecting the dots for this. Thinking about it daily trying to come to a conclusion for the event has been without merit. I know the day, the hour, I know the event, I just don’t know why. What made the difference? Family & friends see the difference. Teachers recognize the change. We sometimes sit and discuss how and why, I can only explain the event leading to it and the changes ever since. Over 6 months later, not a week goes by that someone doesn’t reflect on the change and ask questions about it. The whispered words said over 6 months ago are still present today and thus has changed our lives.
In May of this year, schools were finishing up as well as my wife’s work at the local Christian school. Most parents look forward to having the extra time to be with the kids, to relax, go on vacation and energize up for the upcoming school year in the fall. It may seem displeasing to some but in our world, this time of year would instigate fear of Patrick from Beverly. How can one look forward to aggression, wounds, bruises and depression? Where does one go for peace when peace doesn’t exist in the home? How can one blame these feelings of fear, how can a person look into the next day or week without greater fear? No escape, no outlet. The years of scratches, and bites had taken its toll on her arms and legs. Old scars, new scars, and band-aids everywhere on her arms. Long sleeves in the spring/summer to cover up the sores and the damage. Wonder ointments that never worked, and time that was not always wonderful to Beverly.
If this was just a discipline problem then it could be solved. If it was just stubbornness of personality, then it could be solved. If it was just the normal controlling of the child, then it could be solved. The average person would say spanking is the answer or for the others who don’t believe in spanking, maybe a time-out period would suffice. For the crazies, inflict a pinch on the child if that was his mode of aggression. Often without asking we would receive “advice” sometimes from complete strangers. The one’s who may witness a melt-down or an aggression event and decide that at this particular moment, they feel the need to share the answer. Answers are great but not if they are to the wrong questions. A 1-1 relationship, not odd-even, not square peg, round hole. Never forget answers are commonplace. Do you know a person who didn’t want to share their answer?
The event was a meltdown not unlike the others we’ve witnessed over the years. It was at the landing between the staircase leading to the upstairs office. Patrick was not minding as usual and began to scratch and pinch Beverly, par for the course. I remember walking from the office to the landing to help. Nothing is as terrible as to see your wife bleeding and crying as a result of an attack. Over the years various approaches have been used to gain control of Patrick. Reasoning, time-outs, mild spanking, a loud stern voice. Got that from my ROTC days! Each of these various approaches would be tried for months but the result was a big F everytime. An F for failure. An F for protecting Beverly, and an F for an out of control household.
The uniqueness of this episode was Patrick literally kicked a hole in our wall with his left foot. The hole was big enough I can put my fist through it. This was a first. Now the actual walls in the home were up for aggression. We’ve seen the mini-blinds get ripped and curtains pulled down. Even seen the Christmas Tree come tumbling over, but never a hole in a wall. Patrick was upping his game to a level we never wanted him to get to. An aggressor doesn’t forget the most aggressive behavior. It’s hard to put the genie back in the bottle, we were in trouble. At that time, at this moment, life would have to change. It will be better from this time forward as this would end today. I was completely assured in my belief but had no reason to think this way.
Mr. Moody lived in our house but moved out when he was 7. Mr. Moody was the name of the aggression behavior that was coined by my oldest son Alex. Prior to the EFA’s being introduced, even connecting with Patrick by talking to him was mostly pointless. Very rarely were the words we would say, reflect in the action we desired from Patrick. Also just as challenging was the lack of empathy or existence of compassion or feelings from Patrick. On a hunch one day, I decided that Patrick was not going to be at fault for anything. Complete absolvement, carte blanch. Mr. Moody was going to get zinged, sometimes hourly, even half-hourly on the worse days. Patrick the perfect was acquitted. I clearly recall the first discussion in his bedroom about Mr. Moody. Often Patrick would blame his stomach for being aggressive, so I decided that’s where Mr. Moody was going to live. Why did you bite Mom? Patrick would say and point to his stomach made him do it. No stomach aches, just a cop-out to deflect his behavior.
For many many months Patrick would go on with aggressive behaviors. I would immediately take him to his room and talk to him. I’d reintroduce Mr. Moody and Patrick would point to his stomach and say in his own way, Mr. Moody made him do it. All this is somewhat risky because I don’t need a personality disorder added to the gumbo. Plenty of ingredients already. I’d use techniques such as, “Patrick I’m not mad at you but I’m upset with Mr. Moody” or “Did Mr. Moody make you do this”? Patrick was eager to explain it his way, which was the best way. No fault aggression, no penalties. I kept this approach for many months. I always ended the discussion with “Dad is not mad at you, I know it was Mr. Moody”. I had to gain his trust. During these discussions I noticed his use of words were improving, it was more that a thought was being expressed, his thought, not one being parroted, original output, no setups. The rarity of expression with words from Patrick was staggering.
Every aggression was met with this approach.
Of course this approach can’t go on forever, real life doesn’t work like this. After one aggression episode, I decided to play bad cop. Mr. Moody was blaming Patrick. No safe zone, Mr. Moody is talking and Patrick is going to have to explain his aggression. The look on his face when Mr. Moody spoke was priceless. During his rebuttal, new words would sometimes come out and even insistency and passion that he was not at fault. A remarkable event to me. Patrick is recognizing consequence and the need to express or face the punishment. Also being displayed was the desire for me to believe it was not him who did the aggression. He wanted me not to be upset with him. That day has stayed with me ever since, its in long term storage. Weeks and months moved on and I continued playing bad cop ever so often, and ever so often more and more Patrick was being revealed. I thought Patrick needed to have Mr. Moody as a safety but I also knew I would have to keep Mr. Moody from him more and more.
To the hole in the wall discussion. To me it was the litmus test of what we were going to have in life. Constant chaos, upheaval, fears and tears, band-aids and bandages? Anyone who knows me, knows I like order, calmness, and not a big fan of loud chaotic environments except a loud guitar. Amps go to 10, households should go to 10 for love and compassion, and maybe around 3 for noise. My wife would rather my amp go to 3 so be it. New headphones every Christmas! Your numbers may vary.
Ever since May, Patrick has been a very well-behaved child. Zero aggression, zero destructive behavior. From zero to hero. Mini-blinds that never lasted a month have lasted all summer. Curtains never lasted are still up. More importantly Beverly has been out of the sights of aggression. No biting, arms that are no longer bruised. Things are profoundly better with Patrick in all areas. Patrick tells on himself if he thinks he’s done something wrong. He seeks forgiveness if he believes that he may be wrong. Empathy that was missing is full, aggression that was over flowing is dried up. He seeks to please us and asks for forgiveness.
As we head into 2010, we’re more optimistic than ever with Patrick. I’ve been asked by people what did I say to Patrick on that May day?
UPDATE: March 18, 2008
It’s been about two years since the last major update. Much has transpired since the summer of 2007 and we thought it was time to update our journey. Patrick is almost 7 1/2 years old. He was successful with entering the local county public school with kindergarten and first grade.
We fired the original Pediatric Developmental Doctor including the pediatric staff of doctors over in Woodstock. We felt like a statistic and we could never get concrete diagnosis for Patrick. We researched and hired a new Pediatric Developmental Doctor in the winter of 2007. A night and day difference in communication between us and the doctor. The assessments were more thorough and the answers to our questions were more clearer. Without a doubt, we were on the right path with Dr. Bussey. She was able to get more out of Patrick during the assessments and realized his non-verbal skills were normal. He could excel in normal age appropriate non-verbal activities. It was confirmation of what we had believed all along. Intelligence was present, but the severity of his communication disorders trumped his abilities. During the subsequent assessments Patrick continued to improve both verbally and non-verbal communications. As communication developed, aggression while a big problem for quite awhile was beginning to ebb and even reduce sharply.
We’ve since hired a new pediatrician for the family and have thus far been pleased. Hippo-therapy has been started and we’ve hired a hippo-therapist and a speech therapist for Patrick to ride horses on Saturday afternoons. The farm is within 5 minutes of the house with very reasonable rates. The care and determination they show for Patrick is heart warming. His current horse is named Zee. For those not familiar with hippo-therapy, hippo-therapy means “treatment with the help of the horse” and is derived from the Greek word “hippos”, meaning horse. PT’s, OT’s, and SLP’s in North America have integrated Hippotherapy in medically necessary treatment sessions that have been prescribed by physicians in the United States since the 1970’s. The horse’s unmatched three-dimensional movement provides vestibular, proprioceptive, and tactile stimulation to enhance focus, attentions span, verbal output, postural strength and more.
We hired a Speech Pathologist, Mickey Rosner to assess Patrick during the fall of 2008. He was diagnosed with Verbal Apraxia. Verbal Apraxia (VA) affects the programming of the articulators and rapid sequences of muscle movements for speech sounds. These children frequently display neurologic “soft signs” including hypotonia, sensory integration disorder, and motor planning difficulties. All of which Patrick has been diagnosed with. None of the six Speech trained therapists ever diagnosed Patrick with Apraxia. Ask us why, the only answer we can think of is Patrick was “just another child” and nobody cared. The therapists were simply there for the hour of therapy, that’s it. For that matter, NONE of his pediatricians ever mentioned Apraxia as a possible disorder or his original Pediatric Developmental Doctor, hence there firing.
The speech assessment reveals a limited repertoire of consonant sounds, inconsistency of speech errors, and sound/syllable omissions. These children usually have near-normal receptive language and intelligence. It is a difficult speech disorder to treat with variable outcomes. Many children never develop intelligible, conversational speech. Dramatic leaps in speech progress have been noted with essential fatty acids (EFA) supplementation by parents and professionals.
The most often used EFA supplement is a 1000 mg capsule containing a mixture of DHA (docosahexaenoic acid, 99 mg.), EPA (eicosapentaenoic acid, 148 mg.), GLA (gamma-linolenic acid, 40 mg) available under the name of ProEFA or Complete Omega and manufactured by Nordic Naturals, California.
We introduced Essential Fatty Acids (EFA’s) into Patrick’s diet after a long investigation and networking with other parents with similar problems. Literally within a few days Patrick’s teachers were commenting on his focus and his improved communication. You NEVER indicate to the teachers if you implement a change in your child. You will get more accurate feedback the less information they know. We’re using about 5000mg of EFA’s per day. This is 4 teaspoons in the morning and again at nighttime. We’re using Nordic Naturals Complete 369www.nordicnaturals.com/en/Products/Product_Details/98/?ProdID=1435#
Concerning NEVER indicating if you’re implementing a change with your child. Common sense approach is needed. The EFA’s are not harmful if the EFA’s are less than 10% of total nutrition. When the changes in Patrick occurred it was obvious to the teachers that something was going on and so they asked. We shared the EFA information to the school hoping that maybe in the future it can benefit other children like Patrick. No reason to hide or cover-up the knowledge, bring it to the forefront.
The Role of Essential Fatty Acids
Supplementation appears to cause dramatic leaps in development in children receiving combination of fish oils (omega-3s) and borage or evening primrose oil (omega-6 oils).
The effect is greater than one can expect from speech therapy alone. It’s a LIFE CHANGER! We’re getting as many as 10-12 word sentences now. Patrick is asking questions, what a special treat. Amazing results, increased focus and dramatic decreases in aggression towards himself and other family members. I can’t stress enough the important role that EFA’s have had on our lives.
Latest PDD Assessment
Our latest PDD appointment (March 2009) went better than expected. Patrick was put through a battery of tests. Identifying objects, colors, and reasoning skills, including interviewing us. We routinely fax Patrick’s school work and behavioral sheets to our PDD to assist her with what Patrick is doing. Dr. Bussey scored his results and they were remarkable! Patrick is developmentally that of a 4 1/2 year old child. Amazing results in 6 months! He leaped 1.5 years in 6 months.
We’re scheduled for Patrick’s IEP on March 30, 2008. It should go well. I plan on writing more about EFA’s so keep checking back. Thanks to all the family and friends and teachers who have cared, listened, offered advice and support and all the many prayers and prayer lists we’ve been on. We’re thankful for the love.
Our story begins like most stories, nothing out of the ordinary, a planned second pregnancy with the excitement of our second son in November 2001. Our son Alex who was 4 at this time was so excited about having a young brother to play with and teach. Alex has always wanted to be a teacher and was already asking when the baby will be able to learn.
During the pregnancy we had all the usual Prenatal care and customary doctor visits. My wife was not working outside the home.
Our son was born on an all binary date 11 10 01, which I thought was unique as there are just a handful of dates like that in a century. As a computer professional I would be able to share this unique date with my other computer friends and have a laugh.
Patrick was full term with no complications at delivery, although because of his size he was delivered by cesarean. Patrick weighed in just a tad over 10lbs.
In the beginning, Patrick seemed like a typical infant, sleep, eat, sleep, eat again, and the days and months passed by quickly. Around his first birthday, Patrick was beginning to have a reputation of being a bit tempered mental. He often would not accept consoling if he was upset and would sometimes do some head banging. At this age he was crawling but was not yet walking, but walking would begin at 15 months. Speech and babbling were very minimal, grunts were used, but except for crying, Patrick was a quiet infant.
Time moved forward and Patrick did too. He began to walk and was fascinated with playing with doors, watching the door latch, open the door, close the door, his eyes would light up with excitement and sometime he would even tiptoe from his fun. Head banging increased to times that were frightening to watch. Sometimes we would be driving, and our son would move awkwardly, like an unexpected flinch while in his car seat. He seemed totally oblivious to it and would not cry due to the flinch. We thought he must have had a chill or something, but it was definitely something that we would see more often during the years to come.
We took Patrick to our pediatrician we have used for the past six years to discuss the head banging and the flinches. It was initially hard to describe the head banging and the occasional flinch. Patrick would normally only flinch during a car ride and would not show itself in a small doctor’s office examination room. The doctor was concerned and would ask in great detail the events surrounding the head banging or the flinches. I could see on his face that this was a worrisome trend but said give it some time. Often the head banging will greatly reduce as the maturity level increases. Well we were hopeful by his remarks but still my wife and I were left with a sense of dread.
By the time Patrick was two years old, he was noticeably lagging behind the milestones for his age. Speech and language was very noticeable as being behind as well as attentiveness. He just seemed to be sluggish. If you looked into his eyes, the spark you expected to see was not there and would not be there for several years to come. Sluggish in the sense of not interested in anything. Playing with toys and watching television was not interesting either. Patrick spent much of this year walking around our home looking at doors and latches and playing with the ice dispenser. Going outside at this age was dangerous due to the head banging behavior. If he got mad a head banging episode could ensue on the driveway or other unsafe areas. It was beginning to become stressful on a daily basis. Patrick thrived on pushing his stroller so we went on walks everyday. He seemed to enjoy large non-confining spaces.
Between the ages of two and three we were referred by our pediatrician for an occupational and speech therapy assessment. I remember this day very well because the word “occupational” was very frightening to us. We had no idea what the word meant, why was an occupational assessment needed and what does all this mean? We did the usual internet research about occupational therapy and assessment but still had fear as the assessment day approached.
The occupational assessment took several hours and looking back now, Patrick was a shell of who he is today. During the assessment, the therapist worked with Patrick the best she could but Patrick was to say the least not scoring well. A few weeks later we received the formal written assessment which showed him scoring at 9 months in some areas and never exceeding 12 months elsewhere. Our son was about 31 months old at this time. I can recall my wife crying and worrying herself sick wondering why, how come, and how can we help him.
We would spend thousands of hours over the next few years trying to answer the last question. Along the way would be many arguments about what we should do, what we can expect, why time is passing him by, what does the future have in store for him and us. What happens if he never talks, what about god parents and wills. What about a special needs trust, how much money should we provide. How much additional life insurance we should purchase? What about the needs of our other son Alex, will we be everything he needs, will we be stretched too far? Why?
We were also referred to The Marcus Institute www.marcus.org for a pediatric developmental assessment. This assessment is made by a pediatric developmental doctor who is highly specialized. We had the best PDD in the South. Upon completing the assessment in about 90 minutes, the PDD announced that Patrick showed signs of Sensory Integration Dysfunction, Cognitive Delay, Hypotonia, Speech delay, ADHD, also, fine motor skill difficulties.
Hypotonia was nothing new to us as his occupational assessment diagnosed this condition. Speech delay seemed spot on as that was the primary symptom for all of this. Cognitive delay was not a shock either, but if the child cannot talk, doubtful the child can demonstrate intelligence in meaningful ways. During this time, ADHD it was debatable on any given day. Patrick at this age was all over the place and would not comply with most requests. He was unable to say Dada or Mama and if you asked who we were, most often there would be no response.
We took all of this information from our PDD and felt completely overwhelmed and challenged like never before. We knew that therapies would be the most important thing we could begin to do. After about two months we were able to send Patrick to speech and occupational therapy two hours per week. We were so excited and felt we are on the way to getting him to talk and communicate to us. Not too much time had passed when it became obvious that Patrick was not mature enough to benefit from Speech therapy. Often Patrick would hide under the table in the therapy room and could not actively participate. Occupational therapy was the same result. His maturity level prevented him from benefiting from these therapies. After about 4 months we were told he would be dropped from each therapy program for the above reasons and we should check back maybe a year later to try again.
Another setback, and more doubts. A child who needs help but his limitations are preventing him from getting meaningful help. This was very frustrating to all of us and our extended families. They too were wrapping there arms around our situation with our son and did not know what to say to us, or what not to say. The last thing they wanted to do was to hurt us in anyway but they too were frustrated and wanted the best help for our son. I remember this period of time seemed to last for a couple of years but recalling it now I think it was probably shorter.
Patrick was of the age for the young 3 year old pre-school program at our local church. Just the idea of Patrick not in our environment, let alone among teachers who may totally out of any skills to handle him was frightening. I remember the pre-school teacher coming over to our home to visit us and Patrick for the very first time. We explained to her about Patrick’s problems but felt she could provide a safe and fun learning environment for him.
It was not too long into the pre-school year that we were referred to the Babies Can’t Wait program. It’s a program for children under age 3 that provides some services that have some learning/speech programs. Of course our son was older than 3 and could not participate. Patrick had a remarkable year in pre-school. He never hit or hurt anyone. He often would show affection to other children who may have got hurt or had a skinned knee. He was liked in his class very much.
Our observations during this time was he seemed a bit inattentive but not really hyperactive. There is some family history of ADHD so we thought, if we could “slow him down; we could give him a better chance of learning”. If he learns, he will begin to show us by talking. We met with our PDD and got a prescription for Metadate CD. The dosage would be 10mg and was the smallest dosage you can give. The affects were somewhat noticeable the duration of the medication lasted maybe 3-4 hours. We increased the dosage after about 4 weeks to 30mg and would keep Patrick on ADHD medication for the next 8 months until he was age 4 ½.
We were referred by the pre-school program to meet with the county special needs department for an assessment. If he demonstrated he had special needs, the county would provide him a special needs program including some speech and occupational every week. Of course he qualified so in the fall of Patrick being 4, he began attending a 3 day a week special needs program. He would also attend for an hour or so each day the “regular” 4 year old pre-school program.
We have to say that this program has benefited Patrick more than any insurance based therapy. The special needs teachers are incredible with him. These teachers would talk to us and try and give reassurance that Patrick may improve greatly, but if not, so what! We still have a great son, a son who loves us and is happy. Such emotional times these were, unforgettable. Along the way we would begin to meet other parents of special needs children, some with more than one special needs child.
When Patrick was 4, we researched on how nutrition can play an important role in causing and relieving some symptoms that Patrick has. I will never forget this day. I put together a package of data to take to our PDD about nutrition and to get her advice on hot to implement our ideas. The main idea was to put Patrick on a GFCF diet, Gluten free, casein free diet, the total elimination of wheat and milk in the diet. There is tons of information about this diet on the internet so I won’t get into the details of it here.
The PDD was not very supportive to say the least about the diet, let alone about nutrition as an approach to assist Patrick. We’re not asking for a cure, we’re not asking for a remedy, but we are asking would it help. Not according to our PDD.
We decided to try the GFCF diet anyway. We started on a Friday in April. Within days, we were seeing marked improvement. It started as greater attentiveness, later on, audible sounds and the trying to communicate, all of this in just the first week or two. Even more incredible was Patrick was not taking any ADHD medications.
The pre-school teachers came out to the car within the first two weeks and asked us what did we do to Patrick? He was beginning to talk and showed great effort in wanting to communicate. They said they have never seen any child show such a dramatic change. We were so thrilled. If two weeks showed these results, what results would we get in 6 months, or a year? It was a summer of happiness as our son began talking for the first time, not at an age appropriate level, but at his level. Our car inside was beginning to fill with a new voice and new sounds that had been missing for far too long. It was an incredible time. Patrick even mastered potty training.
One day we met a mother who has a son being moved from the afternoon special needs program to the morning program with Patrick. My wife met her one day and they hit it off. A few weeks later I would meet Michelle in person and it was great. We had a similar philosophy towards our kids and for the first time she seemed to know as much as I did about nutrition, delayed speech and all the rest. Michelle told me about a doctor in Wisconsin who is leading the way in nutritional assistance for special needs kids. Dr. Hicks of Pathways Medical Advocates was going to be speaking at a seminar about vitamins and body detoxification at a local church in a few weeks, so Michelle registered us to go.
After the seminar was over, we knew this was the doctor we had been searching for all these years. He too has a special needs son with some similarities to Patrick. We scheduled an appointment in early April to begin this new approach.
We had our initial consultation with Dr. Hicks where he observed Patrick and listened to our story. We have since administered several lab tests to our son and are waiting on the results and another consultation. As we began investigating detoxification we just weren’t sold on the science of this approach. NONE of the insurance companies were approving any of the bio/medical tests. We had some huge out of pocket expenses $$$$$ and none of the tests ever got us closer to an answer or help.
Patrick is now 5 ½ and now is able to talk on a young 3 year old level. Not the best number, but a much better number than we have ever had. Remembering single digit numbers when he was 2 ½…3 is a great number!
Patrick is scheduled to enter kindergarten in our local county school system the fall of 2007.