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My Family....


fall 2008

Our Story

Nicholas was my first child born. He was only five lbs one ounces at birth and had breathing troubles that later turned into chronic asthma.I ended up raising nicholas at a very young age alone. I left a very volitale and abusive relationship with his father. My hope was taking him from that situation would make our lives better. I had no idea at the time what I was in store for as nicholas battles would be come harder and harder as life went on. Nicholas always struggled to meet up to his peers. He was a happy baby though always silly and fun. But at age three something changed. He became almost unresponsive to redirection. I constantly struggled to keep him on track or to even get his attention. He was defiant and never followed directions. School was always a struggle and I always blamed the daycare for what was going on and sat in a pit of denial. At only three years old he was kicked out of daycare because of his behavior. I knew that day something was seriously wrong. I began my struggle to understand what was going on with him and how to fix it. I started with simple reward systems, diet changes, herbal supplements and intense counseling it masked the problem but nothing seemed to work.Things seemed okay for a while but they really began to change. He started to get aggressive and easily flustrated. He constantly talked back and could not handle social situations or changes. I made the gut wrenching decision to begin ritalin medication of concerta. It was a drastic mistake he had a very rare reaction to the drug. Within minutes of being in sunlight he had third degree burns across his his forhead and nose and checks the skin started peeling away from his face within minutes. He began acting sparatic and uncontrollable emotions emerged suddenly I received a panic call from his preschool.Once I got him home it took myself and my grandmother along with my mother to restrain him. He was screaming hysterical and crying I had never seen this behavior before. His eyes were glassy and his heart was racing out of control. I rushed him to the emergency room to seek medical assistance. They told me he had a reaction almost like being on speed the doctors could only watch the meds take their course and prepared me for a very long night. Their was nothing they could medically do. It was the most frightful night of my life. I held him as he screamed and cried uncontrollably and restrained him when his behavior became untamed. I cried for hours watching him I felt so helpless and afraid I was going too loose him it was four thirty am before I was able to get him to sleep. That morning nicholas awoke around ten completely lathargec and his breathing was slow. I called the family doctor but she was no help. I knew to never try these drugs again and it was years before I allowed doctors to try a then new drug out strattera which was a miracle drug. Finally he was controlled through this medicine but it took a lot more to get us there. But even that lasted a short time.After our frightful bout with ridilun I kept pushing the counselors to search deeper but no one would listen but I never let up. One of the aides at his school quit because she was so stressed out by him and his behavior. He was jumping off tables throwing toys and his behavior was borderline psychotic. I removed him from the program for a few weeks but nothing helped he returned and I began utilizing the school system.When nicholas entered kindergarten I was blessed with the knowledge and wisdom of a what most would call seasoned teacher. She immediately recognized the signs of his problems and became the voice that would begin a process I as in no way prepared for but desperately needed. After months of fighting I finally got the school to do testing at kindergaten level for beahavioral problems and he was diagnosed ADHD. I knew this diagnosis was not accurate but with it he began to receieve resources through the school district that are still implemented today.Since this diagnosis I have switched one family doctor and two counselors to the one we have now who is by far amazing but other diagnosis have been added include Bipolar and PDD (pervasive develeopmental disorder). Both of these conditions are serious conditions the PDD is on the autistic spectrum (don't even get me started on that) but not considered true autism and the school to this day is non compliant with any diagnoses of ASD. Since I have not went through FORMAL testing for this condition he is still labeled specific learning disabled (sld) they may add cognitive later on but the emotional disabled is what I am fighting to have proven. His las IEP testing was done shortly after our home caught on fire last year. We lost everything including the home and all contents as you can imagine this was devastating for him. The rules state to emotional disabled testing can be done within 6 months of a traumatic incident. We are now at six months so the push for that testing has begun.Nicholas has been diagnosed symptomatic of autism particularly Asperger Syndrome and has been labeled high fuctioning autistic by both his family doctor and his psychiatrist. In fact everyone on the planet sees the autisim in him EXCEPT the school so to shut them up I will fix that. He can make eye contact and his behavior has been modified at times. He still cannot control his emotions and social settings are still a complex situation for him. Processing is difficult for him he cannot move from one thing to the next quickly there has to be a complete break form one event for him to move on or he gets lost in the clouds.For instance if he is writing with a pen and you ask to use his pen he cannot hand you the pen and move away to another task. Instead he will sit there requesting it back frequently and make subtle remarks to the fact he was using that pen for this or that reason. He will get disgruntel and if time enough passes he will merly try to take the pen back himself as oppose to it being given back. He simply cannot break away in a timely matter from what is in front of him once he has interest in it.He cannot handle suspense, loud noises or change. He gets fixations on specific things and goes with it as expressed in the ink pen situation. He is at a reading level of an fifth grader. He can udnerstand complex stories and books. He is currently writing the script for star wars 7 in which he plans on holding on to and directing when he gets older. His math skills are poor in fact he is repeating third grade this year because of the trauma of the house fire he was not able to recover and meet basic standards to move on. Yet he is still doing second grade math and cannot do cursive writing.After years of begging and counselor changes and moves here and there nicholas is finally getting the testing we need. I am happy to say that neurological testing will be done the date is to be set within the next few weeks. This testing will allow us to pinpoint what is going on with him and how he processes the world around him.In the meantime he will conintue to receive all the services he has. I have located an advocate for him here in town.and also have him authorized for disability services through our local community mental health facility. I still let him play sports. Even though he is not the star of the team the acknowledgment alone makes him feel accepted. I will continue to put him in activities like this and the more I do so his ability to fit into social settings shall progress as they already have.He has a good medicine regimen and he still sees his counselor and psychiatrist and family doctor. At school he has three hours a day in a resource center and the rest of the time he is in the regualar curriculum room. I do have him riding the bus this year to and from school which has added a good sense of responsibility to his day. He receives occupational therapy, physical therapy and counseling at the school.We do various activities and I let him live as normal of a 9 year old boys life I possibly can NEVER treating him as a child with a disability. My method is simple push him far if I cripple him he will never get anywhere. I have seen a response form him with this and the harder I push him the harder he pushes himself. Always seeking recognition his prayer was answered when the school told him he was selected to be an aide in the 3-4 year old preschool. Because of his medication nicholas is much calmer he is a sweet loving boy who loves hugs. He is not afraid of touch and we use the brushing technique with him. He absoluetly loves his baby sister. The school has seen his interaction with her and thinks this technique of using the aide opportunity for compliance in the classroom is just what he will respond too. During his time as an aide he will assist with crafts and read books to children. It will give him the big brother status at school he misses when not at home. He is not a danger to himself or others which makes him and ideal candidate. He is also a reading buddy for a kindergartner.I will continue to follow our plan we have in motion now and as I already know that can change. I am optimistic of this testing and YES I would love it to come back that he has NO signs of autism BELIEVE me I am okay with that but for the mean time i have already began falling into place as a mother of a child with this and even if he is not diagnosed with this disease I will continue to help other parents.If you think you're child is autistic here is what you Consult with doctors and the school Find an advocate in you're area to assist you with the process Push for autism testing through the school or counseling center Make sure to keep you're child in with a counselor and a psyciatrist Try to use as many resources in one place as you can for instance his counseling center, advocate and DD services are all affiliated with one another so their is no lack of communication.I hope this helps you and I will write more soon

Thursday, October 18, 2007

Plain Talk about PDD and the Diagnosis of Autism

This is what they are currently diagnosing my son with!
Let's start with the obvious: the label PDD (Pervasive Developmental Disorder) is a poorly understood, uninformative, confusing, disliked, and should be abandoned. The sooner the better. In fact, it should never have been adopted in the first place.
Over the years I have talked and corresponded with thousands of parents who have told me their child "has PDD." I often respond by saying something like, "Your child doesn't have PDD. There is no such thing as PDD. Your child may be autistic, or have a condition like autism, or many characteristics of autism, but he doesn't have PDD because there is no such thing. PDD is a label concocted by psychiatrists to cover up the fact that they don't know what your child does have."
If any parents have been distressed by this blunt, unexpected harangue on my part, I would be surprised. The vast majority seem relieved to at last hear someone giving them straight talk about PDD. Parents live with their child 24 hours a day, 7 days a week. These parents realize that their handicapped child will in all likelihood be the central focus of their lives for the rest of their lives. They want to know the truth, insofar as the truth is known. They don't want to be misled or misinformed by sugar-coated verbiage masquerading as informed fact. If we don't know the right label for their child, let's tell them that up front, rather than hide our ignorance behind the mystique of a pseudo-scientific label, presuming knowledge we don't have, like PDD.
I am very much aware that creating suitable names for "psychiatric" or "behavioral" disorders is a difficult and thankless task. Look at what we have now: Schizophrenia is Greek for "split mind." Mental retardation is a euphemism for low intelligence. Hyperactivity merely describes what everyone knows too well--the person is too active. Autistic means "day dreaming."
Until we know what causes these things we are stuck with using a somewhat descriptive term to characterize them. I'll agree to that, as a matter of necessity, but where does PDD come in?
The passage of time has led to widespread usage of the terms, schizophrenia, mental retardation and autism. There is little or no likelihood that PDD will be afforded similar acceptance.
In the Autism Research Review International (ARRI) (1991, Vol. 5, No. 2), we summarized an excellent statement, signed by 16 prominent European and U.S. professionals in the field of autism, titled "Autism is not necessarily a pervasive developmental disorder." The authors noted that although the term PDD was introduced well over a decade ago, it has not really caught on, and is unfamiliar not only to lay people, but to the politicians and administrators, most of whom--thanks probably to Rain Man--are aware of autism. The article observes that the term "pervasive" is particularly inappropriate, since severely retarded persons, many of whom have chromosomal defects which affect every cell in their bodies. Autism, they point out, rather than being a pervasive disorder, is in fact a specific one, characterized by deficits in social and cognitive functioning.
Quite apart from the misleading and inappropriate semantics of the term PDD is a practical matter: autistic children and adults unfortunate enough to have the PDD affixed to them have often been--and continue to be--excluded from programs and services designated for those with autism, and which would benefit them.
Clearly, the PDD designation, along with its cumbersome bureaucratic baggage (i.e., PDD-NOS: "Not Otherwise Specified") should be relegated to the Archives of Failed Attempts, where it will have plenty of company, while we go on about our business.
There are many more children with autistic-like disorders than there are children with autism itself. When I founded the Autism Society of America in 1965, I urged, and my recommendation was followed for many years, that all ASA stationery, brochures, and other printed materials carry the wording "Dedicated to the welfare of all children (later 'children and adults') with severe disorders of communication and behavior." The need for an encompassing title for this group was evident even then.
Of the various labels that have been suggested, the one I like best is "autistic spectrum disorder," which, I believe, was first suggested by Wing and Gould in 1979. The advantages of this term are obvious. For one, it acknowledges that there is a range of problems and of subtypes, and it does not pretentiously claim to be based on knowledge that is not yet available to us.
At the Autism Research Institute we have been working for over a quarter of a century on the development of more objective scientific means of diagnosing children with autism and related disorders.
When my book Infantile Autism was published in 1964, it contained, as an appendix, a checklist designated "Form E-1" (E for experimental). Within a year E-1 was replaced by the Form E-2. As of June 1993, the Autism Research Institute has collected over 16,800 E-2 forms, completed by parents of autistic and possibly-autistic children in over 50 countries. (Form E-2 is available in eight languages.)
Form E-2 is designed for completion by the child's parents, and asks questions about the child's early development and about language and behavior through age five an a half. (After age five an a half, autistic children begin to change in many ways, so it is better to rely on behavior prior to that age.) Once we receive a completed E-2 form from a parent or professional, we enter the data into our computer, derive a score which tells the child's position to the continuum ranging from "classical autistic" at one end to "not autistic" on the other, and mail a report to the sender. We have performed this service, free of charge, for well over a quarter of a century for thousands of parents and professionals world-wide. (Readers of the ARRI are invited to request E-2 forms and avail themselves of this free service.)
A major purpose of this effort is to collect data for statistical analysis. There is no doubt that the "spectrum of autistic disorders" contains numerous subtypes, some of which are large enough to be identified by as our database of almost 17,000 E-2 Forms. We are already aware of some of these types, such as classical--Kanner's Syndrome--autism, fragile X autism, Rett syndrome, and candida-caused autism. My colleague, Dr. Stephen Edelson and I are conducting factor analyses and cluster analyses of the E-2 database, in order to identify and characterize these and other subtypes. The database is large enough so that subtypes identified by cluster analysis within one segment of the database can be confirmed by cross-validation on E-2 data which was not used in the original identification of subtypes.
As this work advances we will report on progress in the ARRI, and in other places. Subtypes identified through this means of statistical analysis can be validated in a number of ways, independent of the E-2 database, including family history variables, clinical laboratory tests, and differential responses to drugs and other treatments. It is thus hoped to place the diagnosis--as well as the treatment--of "autistic" children and adults on a more scientific basis. I believe that progress in this field will proceed faster if we rely on the identification of subgroups through the analysis of statistical data, rather than on constructs based on speculation, conjecture, surmise and subjective impressions.
In the meantime, let's get rid of "PDD!"

1 comment:

Vevina said...

Well written article.

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