Introduction

So that previous post gives some indication to the things going on in our lives. I plan on using this blog to document our progress for Zach's treatment and just try to sort thoughts out.

There may be times when I say things our use language that some may find offensive. I certainly don't mean to offend anyone, but want to capture as much raw information as possible.

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.

...or is it memory lane

So Zach started speech therapy. He never liked it. In fact, he would cry when the speech language pathologist (SLP) entered the room. I was in a fog and didn't notice.

We had some fun this past summer, there was the trip to Sylvan Beach and cousin J's wedding. However, between dealing with Steve's Grandma's death and my mother's diagnosis with lung cancer, I had left my children's care largely with my dear mother-in-law. I still was around, but not quite paying attention like I used to. When things partially stabilized with my mother's cancer, we sent Babcia M. home to North Carolina. As I began thinking of the transition that would take place, how I would have to regain my role of primary caretaker for the kids, my Mother's medical advocate, and trying to handle my workload at my job it struck me.

I viewed a friend's blog who has a son on the spectrum. I went back, and searched it furiously until I found what I was looking for. It was a pervasive development disorder screening tool. I ran the tool and an "oh shit" moment took place. But the score I received put Zach on the mild end of the spectrum - certainly there must be some room for error, and he was not on the spectrum just a stoic kid like his father. Then I asked Steve one day: "When was the last time you heard Zach say anything?" He couldn't remember. Nor could I. His language had stopped. Then I ran my own informal tests - he doesn't respond to his name, he is no longer pointing, he regressed in speech (to a complete stop!), he has poor eye contact.

I read his initial evaluation from Early Intervention - things weren't great, he was delayed for sure - and now he wasn't even that. He was no longer the child they described. He was on the spectrum, I knew it. I needed to get some affirmation of my suspicions. But more importantly, I have to let Steve know. I hated this. I hated knowing I was about to break hearts, dreams, hopes. That is what I was about to do.

I gave Steve the web address for the tool, I had him run the test for Zach. He scored Zach slightly differently than me, but again, Zach is coming up on the spectrum. I am not sure if Steve understood what this meant initially. I know I wasn't even sure.

So, at the next speech therapy appointment, Steve was there, I was there, and we cornered the SLP. We knew that she has 16 years under her belt as an SLP, and had seen her fair share of kids on the spectrum. I knew she could not give an official diagnosis. But I needed to know. Off the record/not officially/ relieving her of all legal responsibility - is he? Yes, she thinks he is on the spectrum. She also says she sees he could have a great future - not to give up, to fight for him and that who knows, maybe one day he could even go to college. (I realize now that these were strong words of encouragement and hope that we need to hear over and over and will never get sick of hearing.)

That was it. My heart had officially shattered in a way I never knew it could. I had been hurt before; from the mild dumped/cheated on by a boyfriend, family disputes, to the more serious and long withstanding hurts such as being the victim of a sexual crime, my mother's illness, the loss of my father. Still, these things paled in comparison to what I was going through and what I am sure Steve was going through. This is the first time I witnessed pure evil acting on my child, my baby, only 2 years old.

Zach had a two year checkup coming up with his pediatrician. This would be yet another opportunity to confirm our suspicions. He said nothing in terms of diagnosis other than to concur that it was a distinct possibility and that we should get in to see a developmental pediatrician (which we had already set the wheels in motion through Early Intervention). The most striking part of our visit? The fact that our doctor spent over and hour with us. The waiting room was filled when we left. Most everyone should realize that a doctor's visit is usually contained to 15 minutes at that. We certainly were given more consideration. We certainly had something worth consideration. This was no longer a worry, this was becoming our reality.

The tears were almost constant. The pain so enormous that I wasn't sure I could bear it. And all the while, my two beautiful children looking at me as a mother to give them hope and belief that life is good and they are safe. The irony of this is that I was terrified. I was so afraid I would not be able to rise to the occasion. I didn't sleep, I barely ate. But I tried my best to act like all was normal for their sakes. I begged God to give me a grave, painful illness and in it's place, take away all that was going on with Zach. My life insurance policy was hefty - it could certainly pay for all the treatment he would need to make him better. Take my life. But no. No one would ever love my children like I do. No one could possibly advocate for them with the same zealousness as I can, not because I have great skill, but because my love is so great and my passion as a mother is so fierce.

So I began to read. And read, and read. Sleepless nights with stress hormones running through you create a sort of concentration I have never had in my entire life. I must have read a dozen books in a two week span, on top of my job, caring for the kids and house, and storming the internet for information. I began a plan of action. I decided to let the others in my life know what was going on. If I didn't have their support, or at least their understanding of our circumstances, I was sure to lose my sanity. So we wrote the letter and distributed. And we cried some more.

Driving down the highway

We had left work and were off to pick up our beautiful daughter from the sitters. Steve and I have the luxury of carpooling together which is sometimes the only time we get to really talk to one another. This was 3 years ago, and I still remember it so well. We had just found out that I was pregnant again and we were totally excited. Would it be a son to complement our daughter? I thought about telling all my family and how exciting that would be. And then I thought about how lucky my family was, out of my 3 siblings, all the children were relatively healthy and happy, normal kids. I blurted out to Steve something on the order of: "You know, my family has been really lucky in the kid department, with the exception of a few minor issues, we have had very little go wrong. My nieces and nephews are all healthy. It's almost like my siblings were all so lucky - odds are in my favor that I won't be." That thought still lingers in my mind. Steve remotely remembers this conversation. Did I know something was up even back then?

I remember when they first told me at the ultrasound that we were having a boy. The dark room glowing from the light of the ultrasound machine, I could see my dear husband smiling like a young boy on Christmas morning. And if you knew my stoic dear Steven, you would realize how big that is.

And then there was the call from my OB/GYN. You're almost 40 weeks, she said. Baby is measuring really large, she said. You had a difficult birthing with your last one. Lets do a C-section. How I cried. I called everyone and asked what to do. Safety first, they all prudently reminded me. Stories of shoulders getting caught in the birth canal, broken collar bones, nerve damage. Go ahead I told the OB/GYN. Schedule me. I never had the opportunity to go into labor.

And just like that - he was here. Beautiful with 10 toes, 10 fingers, APGAR scores of 9 and 9. Big bobble head. And 9 pounds; no where near the 10.5 pound bundle they threatened me with. He nursed well. He slept well. He was so quiet compared to his sister who left the womb screaming and hasn't stopped since. He smiled at 5 weeks. Relief. He sat up and cooed and smiled at everyone. My beautiful boy. OK - so he didn't crawl until late. Some kids don't the pediatrician said. My mother-in-law told stories of cousins who scooted much like Zach did. All other milestones appeared on target. He took is first steps right at 12 months. He was saying Mama, Dada, baba, sit (he would yell at the dog). He smiled. He laughed. He was perfect.

A friend whose wife had given birth to their own little precious boy bundle just 3 weeks prior to Zach called one day. They were concerned about K.'s speech. Could they come over for a playdate and see how the boys compare? Sure. They come over. Zach says more words than K. K. also has some strange tendencies - like going through the house and closing all the doors, over and over. K. has temperament issues. But alas, they are not all that different with milestones.

Certainly, nothing was wrong. We were both used to our wonderfully intelligent, early speaking daughters. K. started early intervention for speech therapy. We held off thinking he was just quiet like is old man. Finally, after hearing stories of K's progression with the speech therapist - I give the doctor a call, we get a checkup, and he says go for it. Early Intervention comes and does their assessment and says speech twice a week for a half hour each. OK. The service coordinator remarks that we'll have him talking in no time.

If only that was true.

A Kid Named Sophie

So, Sophie, or Sophia her given name and what she prefers to be called, was always ahead of the game. She was always meeting and often exceeded the defined development milestones since an infant. At her well checkup for age 3 - I noticed that she could be doing better with her coloring. At age 4 - the milestone was that she could make stick people - which she is far from doing. She is still mastering making circles, x's, and the occasional letter (so far q and h).

After a brief conversation with her pediatrician, he recommended that I contact the school district for an OT eval. He said it was likely that she wouldn't require services per se, but they make provide materials to help work with Sophie. Sounds good.


Yup, sounds good. Too bad it wasn't the full feel of what was/is about to transcend.
4 separate evaluations - one by a psychologist, a speech therapist, a special ed teacher, and yes an OT. I needed more appointments like I need another orifice; Zach, with his two appointments a week, and the speech therapist pushing for a third with an OT, the dog to the vets/groomers, mom and the cancer associated appts (drs visits, tests, xrays, ct scans, pet scans, surgeries, various treatments, getting medications and devices, getting hte house settled for her, taking care of her financial tasks and maintenance issues around the house, trying to keep her out of depression - socialization, getting her books, etc.) , trying to get our house settled (trying to furnished and decorated - has anyone tried to get a painter in Syracuse recently??? and looking into renovations), while trying to hold down a job which has just turned topsy turvy - new position, new division, new building, lost my office and now in a cubicle (blek), NO babysitter and no availability at local day care, and just other life appointments. So when I recently broke a toe and didn't go to the doctor - I was told by many - you should go to the doctor - ha ha ha ha ha. For myself? Well, a scratch to the cornea did eventually lead me to take the time for an hour long visit with a doctor. Alas, this could impede on me providing services to others - so I had to have it taken care of.

OK - back to Sophia. I have been told we have to meet with some sort of committee at the school district to get the results of all these evaluations. Yes a committee - some sort of panel of all the evaluators, and educator, a parent of a special needs kid, and I have no idea who else. I find this all overkill. I understand why these things might exist, and even their utility for certain circumstances. But I am so tired of process/procedures circumventing logical, thoughtful individual approaches to problems. It is showing up in life more and more - and leading us to be nothing more than mediocre at best. I have this same frustration at work very frequently, and in life in different ways - anybody try to do their taxes and read the accompanying documentation? YIKES. And I have a masters degree - how does the average Joe handle all this?

She superseded some of the evaluators tests - but showed frustration in other areas. Note: frustration, not inability. The OT commented on her not being able to use scissors well. The girl has only had scissors for about 2 months now - she is such a spaz that I was afraid to give her sharp objects intended to cut, especially when I have an almost 2 year old that I need to keep an eye on and make sure she doesn't give him a hair cut. (This being of particular importance since Zach's hairline could be better.)

Did I fight the system. No. I instead am trying to tolerate it by going through the motions, as much as it interferes with life, and hope that all is well in the end. I need this positive outlook right now. Lately, it is very hard to find inspiration and hope with so many things going on.

Therapists, therapists, therapy all the way

So that previous line should be sung to the melody of "Jingle Bells" to get the real effect.

We had Zach referred to early intervention for speech delay. This required a full evaluation that looked at not only communication, but physical, cognitive, social-emotional, and adaptive issues. According to them , the speech delay was the only issue they were concerned with. So here we are 2 months later, with speech therapy 2x a week. He dislikes his speech therapist. If I am around when she has her visits, he cries, and begs me to take him out of the room. He has made no language progress at all. Zach prefers the company of men, with one major exception, and that is me. I can tell you at times it drives me bonkers, but I also must confess that it snags at a heart string or two for some reason. I love my kids more than I ever thought I could love anything, and when I see this sort of attachment, it does feel like some kind of reciprocation. Hopefully, none of this is unhealthy. I digress. So, there are no male speech therapists. This in turn has prompted my speech pathologist to say we need OT. Is she right? Well, perhaps, but I don't think so. It just leaves me wondering how he would deal with yet another stranger in the mix. Hmmm. Child prefers men and has stranger anxiety - I know let's bring a strange woman around to teach hi hot to adjust.

Sometimes I wonder if I should have kept my mouth shut, and just let the kid naturally progress. Sometimes I wonder if I should just stay home and....
Can't think that way. At least not now. Too many bills to pay.

Then there is Sophie - this will require a part deux to get through that story.

Finding Mary Poppins

So, when searching for day care options make sure you take a belt of scotch on your way our the door to interviews. After previewing candidates, and narrowing it to three, I decided a visit to our final 3 contestants was in order. So, who did I choose. No one. I extended my MIL's stay for another month to figure out just what the heck I am going to do.

The gotcha's?
Candidate #1 - I swear there was pot smoke or something going on in that house. The fact that her 4 year old daughter came out at one point with incense sticks made me wary. Then a review of craiglist where I originally came into contact with her had accusations of my suspicion - pot smoke. There was a reference to check out her myspace page, which I didn't. Enough drama for me. BTW- I don't really care if someone smokes pot - but all I could think about was some major partier watching my kids after a long night, and Zach falling down the stairs and her barely noticing.

Candidate #2 - House was a little nuts upon our visit. (A house with 5 kids - somewhat expected.) She was looking to take on more than my 2 kids and she had 5 of her own to boot. Yikes. Open backyard that went into the old Camillus Cutlery. Hmmm. Dad has guns in the house. uh oh. I am not against guns - but could just envision one of her older sons getting curious, Zach being Mr. Zippy getting out of sight for bit, and then wammo. No no no.

Candidate #3 - I felt this woman could be a great friend. Loved talking to her. However, her kids seemed so calm - could she handle my little spazzes? The fact that they were doing construction on their house- and my two ultra-curious George's. uuh oh. Very nice dog who looked like it might have had some pit bull now having to deal with my two spazzy kids. Hmmmm.

The pot smoker, the guns, or the pit bull. We miss Nono and Nana so much!

All of these candidates seemed nice. I don't think any of them would have been abusive. However, my comfort level was just not there. Could it be with anyone? I have basically only left my kids with family. Will I be able to get over my trust issues and get an outsider involved with my family? Wish Zach was talking more.
That would help.

I wonder if someone with sexual assault experiences can ever trust anyone. Will this impact my kids? I want them to have wings, and I feel as though I might be their anchor. I cannot let this happen.

There is good in this world, good people that is. I have to pray that God can send one of them my way.