The Letter

Friday, October 24, 2008

To Our Dear Family and Friends:

We wanted to send a letter out to talk about all that has been going on in the our home.

It’s been quite a journey we have been going through. Some may know of Leanne’s Mom and her recent diagnosis with lung cancer. It was caught relatively early and there are some good treatment options available. It has been a tough journey for Mom with lots of bumps and wrong turns down the path, but alas, it is looking like she will likely be able to start treatments soon. She has been quite a trooper throughout this.

The other part of our journey has been dear Sophia. She recently started pre-school and seems to like it a lot. She has been identified as having sensory/motor issues and will begin starting occupational therapy twice a week. She has great skills, and tested very highly in several areas of her development tests. Her occupational therapy will hopefully help her with issues such as picky eating, sleeping difficulty and inability to sit still as well as fine motor skills. She scored quite high in other areas and the evaluators have told us that not only will she do well in school, she is likely to exceed and be quite above average in her intellectual development. Anyone who talks to her can see that!

Now on to Zach. Many of you are aware that he has been speech delayed. Unfortunately, we have seen regression in his speech as of late. We are going through the process of getting him formally diagnosed, which is a painstakingly long time (likely in the 3-6 month range in order to meet with a developmental pediatrician). In the meantime we have been doing Early Intervention with Zach which is getting him provided with speech therapy services, and will be adding a occupational therapy service soon.

Steve and I have been researching what is going on with Zach; there is a plethora of information online, several books, speaking to several development professionals, and have a close friend whose child lies on the autistic spectrum and has provided her experiences. We have been able to locate some of the screening and diagnostic tools used by professionals and have done a preliminary assessment of Zach’s current situation. We are fairly confident that Zach will be deemed to have a PDD – Pervasive Developmental Disorders, which autism is part of. We have addressed this with Zach’s pediatrician, who seems to concur, although he did not give an official diagnosis. We have also discussed this with Zach’s speech pathologist whom also concurs, but does not have the credentials to give such a diagnosis.

What we are doing? Continuing to research and talk to professionals right now. The professionals have all indicated that next year is crucial in getting him treatment to affect his outcome. Leanne is considering a leave of absence from work in order to give Zach as much of her attention as possible, while making sure Sophie gets her time too. This decision is a very difficult one and will have a big impact on the family, most likely financially.

Now – the crux of why we are sending this letter. We want you to know a lot more about PDD/autistic spectrum disorders so you know what to expect. Attached is some information that may answer some questions.

Having cared for someone who has recently gone through (and still is in) this process of dealing with a child on the spectrum, we wanted to let you know what can help us. We witnessed our friend and even unfortunately subjected her to stories that we came across on children with autism. She let us know that everyone and their brother did the same. We understand that people will want to reach out to us, and don’t know what to do. What we don’t want from people are anecdotes of people who know someone whose kid didn’t talk until late and their child turned out just fine. Zach’s issues are more than late speech. We don’t want the internet news clips of autistic children who scored the winning basket of the game or who were able sing at the United Nations on International Disability Day. We have likely already seen the clip.

So what do we want at this point? First of all- educate yourself with the provided attachment and anything else you can find on PDD/autistic spectrum disorders. Realize most of the professionals are indicating there is no cure and this is likely a life-long diagnosis.

Second, we will need everyone’s help in making sure our approach will be adhered to – Zach will likely be on a strict diet in the near future – and will need everyone to cooperate and respect it. We have decided to take a holistic approach to the issue – in addition to Zach’s diet, we will be adding supplements that have shown to have helped those children with PDD in conjunction with medical analysis and therapies. His diet will likely avoid gluten and casein, which are mostly wheat and dairy products – very restrictive for sure! We will provide all of Zach’s food. For those concerned with proper nutrition, I assure you we are doing our research and have consulted a registered dietician and his pediatrician to help us in the process.

Third, if you know of any preferred physicians (developmental pediatricians and pediatric neurologists) or therapists (speech pathologist and occupational therapists), we will gladly take the names and references, even if they are not located in central New York.

Fourth, a babysitter once in a while wouldn’t hurt.  One study conducted in 2006 indicated that 85% of marriages of children with autistic spectrum disorders fail. I can certainly understand why, however, I know that Steve and I recognize it is not what we want and it is one of our many goals for our family. We also want to make sure that Sophia gets the individual attention she deserves.

Now what else do we need? Your love, support, prayers. I assure you that this is the most difficult thing we have ever been through – compared to Ph.D. dissertations, colic, job problems, etc. To give those of you an understanding, it is much like the loss of a loved one, with the exception of no closure. For those familiar with grief staging (Elizabeth Kubler-Ross), we are certainly feeling a loss. Hopefully, as we go down the path we will gain more acceptance and understand the situation God has given us.

We feel so blessed in many ways, to have all of you on our side, and to have the two beautiful children we have. We hope to continue to recognize that we have been blessed and that God will provide us the strength and love to contend with the journey in front of us, with grace. Please keep us in your prayers as we do all of you.

And please stay in touch. This can be a lonely journey. Although we don’t expect everyone to actively participate on our journey, we still need interaction with you all.


God Bless,


Autism Spectrum Disorders (ASD) formerly Pervasive Development Disorders (PDD)
ASD is one of the most commonly diagnosed developmental disabilities in children. It is a lifelong disability that is usually diagnosed before the age of three. ASD can interfere with a person’s ability to process information, interact with others, and learn common tasks. Autism is a spectrum disorder, meaning that there are varying degrees of it, from the very profoundly affected, to high functioning.

Certain types of high functioning autism are often diagnosed as Aspergers Syndrome and Pervasive Developmental Disorder Not Otherwise Specified or PDD-NOS. Symptoms include delayed or absence of speech, the inability to appropriately relate to others, repetitive movements, such as hand flapping, and an insistence of a routine. If a child is suspected of having autism, they should be tested and diagnosed by a reputable professional, such as a pediatric neurologist, or child psychologist who is familiar with the disorder. With the correct intervention, the higher functioning autistic child can learn to overcome his difficulties and eventually be mainstreamed into a regular classroom. However, there are some recommendations and guidelines that must be followed when training and treating these exceptional children.

Once a child has been diagnosed with ASD, seeking treatment as soon as possible is crucial. In the U.S, each school district is mandated to offer intervention programs to assist children with this disorder. Establishing an individualized educational and therapy plan is the first step in treating children with this disorder. Since autism is not a disease, there is no single solution to addressing it. Rather, a series of therapies must be mapped out for the affected child. These include development of social, behavioral, communication, and motor skills. An Individualized Educational Plan, or IEP is formulated through teacher, specialist, and parent inputs. It is this plan that lays the groundwork for the child’s necessary therapy and academic training.