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.

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.

Edition number 11 for Zach's first year newsletter

Zach is now 11 months and up to no good! :)

He is crawling and then some now. He tends to crawl without using his knees - makes him look like a 4 legged spider. He does this rather quickly I tell you. He can go up the stairs at pretty much lightening speed, but still has to figure out how to negotiate his way down.

Big news for this time period is that Zach is standing on his own, unassisted, and without pulling up on anything. It is so fun to go to the park, put him on the ground, watch him crawl around, and in the middle of nowhere, he just stands up with his hands outstretched like a surfer riding a wave. So cute - and do you think I can capture a picture of this? Of course not.

He is eating everything now, pasta, rice, meatballs, pulled pork (loved it), veggies and fruits. Nothing he hates - although I have noticed a tendency to go for the sweets. (Dear sister always seemed to like the salty...)

Zach still has Steven's hairline - but Steve tends to think that with his genetics, it's probably good that he doesn't get too attached to the hair he will get.

He says Dada, Mama and tickle and a lot of gibberish that sounds like he is trying to take part in our conversations. It can be very amusing. When he hears sister Sophie start a rant (which she happens to do often....) he puts on his own little show and it sounds like a the McLaughlin Group guest starring Pat Buchanan has come to the Morphet household. I look forward to the spirited conversations that will one day take place...

We managed a trip to Massachusetts and the kids did great. We snuck in a trip to the a contemporary art musuem called Mass MoCA (http://www.massmoca.org/) always a good time. One of everybody's favorite pieces? "7 melting snowflakes" "A "white" drawing documenting the almost imperceptible traces of melting snowflakes". Imperceptible YUP.

Tanglewood was another story. We rushed to get there and grabbed dinner there - Mom noted it was a bit on the pricey side for the fare we received. After a large bottle on a rather warm evening, Zach decided to hurl on Grandma Boulware just minutes before the start of the concert. Did I mention he did this at least 3 times and had her covered from the shoulders on down. YUCK! Off Steve ran to the gift shop to buy an overpriced T-shirt in an effort to ward off the funk. As Mom freshened up a bit (in a public restroom), Steve announced to the rest of us: "Dinner at the park: $45, T-shirt at the gift shop: $22, watching Babcia getting hurled on - PRICELESS." We cracked up.

Our trip to the NY State Fair was a lot more tame - Zach and Sophie loved it!

We are asking for your prayers that we quickly sell our current home, especially now that we have closed on our new house just yesterday. (HURRAY!!!)

That's it for now - next month is the big 1 year. We are planning a party Sunday October 7 - further details to come. We would love for you all to join us in our new house! (Even if we haven't moved in yet...)

Zach is 10 months and Sophie is 3!

Hi everybody:

Just a little update on our family.

Zach turned 10 months and is now crawling. HURRAY! He is also standing on his own, and wanting to walk with assistance everywhere. (It's tough being tall sometimes - my back is killing me.)

He is eating like a champ - loves baby food of all sorts, yogurt, pasta, blueberries, DILL PICKLES and SAUERKRAUT (?!?!). I am thinking he definitely is showing his Polish genes. He is taking a bottle real well now (finally) and holds it by himself for the most part.

He is saying dada, and mama, and baba, and this, but I think he is only getting the Mama part for now.

Don't ask about the sleeping - it aint been pretty.

As for Ms. Sophie - she is 3 and officially potty trained. We aren't at 100% yet - but we are getting there. Unfortunately, Sophie was running a 104.5 degree temperature on her actual birthday so we had to cancel her official kid party - but alas we were able to share her Uncle Robby's party and her Babcia Morphet was able to attend all the way up from N. Carolina. As for what she is up to: She knows her letters pretty well, can spell STOP and SOPHIA 50% of the time, and is a total musician - great pitch and interest. She's been counting for awhile and recognizes numbers 1-11. She knows her numbers in Spanish too. (Thank you Dora) She loves Elmo, Dora, Nemo, Veggie Tales (especially Larry Boy). We are getting into some Leap Frog products right now and she really enjoys them.

So if you are wondering why this email is so late - well, Zach and Sophie have both been ill recently (3 solid weeks of high temps and nausea). And we are about to put our home on the market (for sale by owner - I know, I know - are we nuts - but check out the website http://infotube.net/180909) and the good news - we are moving in September! We purchased a house out in Camillus and should be closing in early September. YEAH! Housewarming party/ Zach's first birthday party is expected to be at the new residence October 7 - so mark it on your calendars.

Zach has been so sick that I have few pictures to share. I'll attach a few and lets hope I can get him feeling better and back to his old smiley self.

9 months and still going!

Hi All!!

Well, Sophie has officially hit the 9 month mark. Wow does time fly!

This past month we were able to visit Grandma Morphet in North

Carolina. Sophie did great in the nearly 11 hour car ride. She had a

blast seeing Grandma; going for walks, her first swing, and lots of big

open spaces to crawl around.

We also squeaked in a trip to visit 94 year old Great Grandma Szarlacki

in Rochester. Great Grandma was thrilled to see us, snatched the baby

to hold her as soon as we got there, and exclaimed "She is so big!".

At around 25 pounds, you betcha!

The most significant of milestones has to be that she is now STANDING.

Yup. Here comes trouble. Let's see how long that crib of hers will

contain her.

She still has 8 teeth, hair still stands up on end, and is still a very

contemplative young lass. She loves books - especially of the touch

and feel variety. It is so much fun to sit with her and read.

Well, that is it for now. Looks like spring has finally sprung here in

Syracuse. Hope everybody enjoys the upcoming good weather.

-Leanne, Steve, Sophie and Buddy

8 months, 8 teeth

So Spring is finally here!

Much like the tulips and daffodils - Sophie is just growing and growing and growing.

She started doing pushups a few weeks ago - even a few one handed ones! This led to her next fateful milestone; Sophie is officially crawling forward, and like a champ. Her pincer grip (between thumb and forefinger) is another achievement this month- which helps her put those yummy Cheerios (although the organic variety) in her mouth! She enjoys clapping her hands, occasionally waving like the queen, and blinking both eyes after Mommy does.

She is sitting up on her own - which helps her play by herself a lot more. She is beginning to get bored with her toys - so out comes the tupperware and wooden spoons!

And yes - 8 teeth! Still eating like a sumo wrestler, I might add.

She enjoys spending time with her family - she loves to see all her cousins. She gives them lots of smiles and enjoys playing with them more than anyone else. I have attached a picture of a few of her terrific cousins from our Easter visit to Grandma Boulware's house.

We will be visiting Grandma Morphet in NC this week - what a fun car ride this should be! 2 tired parents, 1 protective dog, an 8 month old baby and 11 hours of driving down the highway! (Keeping sanity - priceless) Spare a prayer or two for us, eh?

Until next time - happy spring!

She's Here!

Sophia Ann arrived August 4, 2004 -

Weighing in at 8 lbs. 8 oz.
And spanning 20 1/2 in. long.