Bottlehead - I am such a bad mommy

So, cranky tired sick kids are no fun no matter who you are. As we frantically searched for Zach's bottle, Sophie whined to the point that I thought my ears were going to fall off my head. And then it appeared. And Sophie whined some more - and rather than save her from her distress, I did what any reasonable unloving mother would do - I grabbed my camera and took pictures. Zach's bottle attached itself to Sophie's hair. Babcia Morphet and I laughed. I mean really laughed. Poor Sophie. I think we are setting her up for a life in politics, just like the Clintons did to Chelsea.

Anyhow - good news - Zach said a few words - he said "moo", "baa", and pretended to snore. We are so excited that he said these few words again - we haven't heard them in quite awhile. HURRAY ZACH! Go Z Go!

Volcanoes and Stones

So Zach is still running a fever - got up to 103.6 this afternoon. I hate seeing him like this, his already
quiet self near catatonic with fever. No words for too long now. I keep on thinking that they (the Yale psychologist and the local developmental pediatrician) said this would only happen once.

But we still have to have some fun around here. The other day - prior to fevers et al, we made a volcano out of playdoh and did the ol' baking soda/vinegar lava trick. So this is not something that is in the books about appropriate play for kids on the spectrum, especially at a young age - but he loved it nonetheless. It was fun to watch him giggle everytime Sophia put the vinegar in the pink tower of playdoh in anticipation of the bubbles that would soon overflow.

I keep on thinking back to the GFCF diet and how Zach used to have volcanic erruptions himself, and how the doctor told me this was normal. Everyone who witnessed it knew it was pretty excessive even friends with kids who had reflux issues. And I was just reminded a few weeks ago of how frustrating this was - how at a cousin's wedding in the fog of embarrassment of Zach yacking right next to the bride and groom's table - as the bride and groom came running to see if they could help I muttered something like: "Just walk away, you don't want to see this." Not exactly nice of me to say to the bride on her most special day and I don't even recall doing it. I felt terrible that I could have been so rude. But after several months of watching this happen, it had me on such an edge, I am not surprised I was either.

So within a week the GFCF diet worked. He quit puking, gained eye contact, became more verbal, engaged with everyone much more. So why the regression? His diet hasn't changed. I am reading a bit about allergies/food sensitivites and would like to have him tested. From what I read, sometimes stronger sensitivities initially mask lesser ones which end up worsening after you pull the more offending foods. I called a doctor I had heard about on Thursday who would do the testing we needed, but unfortunately, she closed her practice on December 31st. Ohhh no.

Yesterday, a few friends called to check in and see if we could get together. God Bless them! These simple gestures help me to really pull out of the low points. I also realize that God intervenes using things like this. A friend invited us to a gym and movie night)Sophie's old favorite "Finding Nemo" at My Gym - the kids gym and activity place. Sophie had school cancelled on Wednesday and Friday (snow day an teacher's conference) and was really itching to get out of the house. We decided we would make plans to go and that would be some great one-on-one time for us.
Sophie had a blast! And I saw a few mothers I haven't seen in awhile. One in particular, got to talking with me. She began discussing her son's skin condition and how it cleared up once they took certain foods out of his diet. I asked her how she knew what the culprit was - and she said she had him tested. I went on to tell her that we had Zach on the GFCF diet. She looked right at me and asked if he as autistic - and I told her yes. Wow - she was pretty astute. She then gave me the name of the doctor she went to and told me she knew he treated other children on the spectrum. She even had his card with her - and I looked at the address - it's 1 mile down the road from our house!

For those of you who don't believe in a supreme being like I do - I know you are thinking this is all coincidence. I am a pretty logical, analytical being, and tend to feel that way about things too. But I can tell you, that in my heart, this serendipity does not feel like mere coincidence, but another stone we are supposed to step on in our path to wherever we are supposed to be going. It may not unlock the mystery, but I am supposed to investigate it anyway, and I will. No stone will go unturned.

Another letter

So, we are still without the necessary services from the county and Zach is running a fever of 103.5 degrees. To those with children, we all know that having a sick child is no fun, a high fever even worse. Add in the complexity of a special needs child who is non-verbal and doesn't understand language - -and all I can say is another layer of heartache. I cannot tell him that he is sick and that it will pass. I cannot tell him that he needs to drink to stay hydrated. I cannot tell him that he should not fight the medicine we are trying to give him and puke it up all over the place, or else out come the suppositories that are only in acetaminophen and don't last nearly as long as ibuprofen. But probably worst of all, he can't tell me if/where it hurts. With this in mind, I have decided that every time Zach gets sick, he will immediately go to the doctor in case of something more serious. There goes some serious amount of time and copays, my friends.

So off Steve took Zach to the dr's so that I could go to work and hammer out a new schedule and deal with several meetings. While at the dr's office with Steve - he yacked all over. Steve was going to ask Dr. N about getting Zach tested for Lyme disease, but amongst the chaos, did not manage to sneak it in. So, we decided, since we think the front office at the pedi's is sometimes hard to navigate, we would send a fax with our request and medical reasoning with attention to Dr. N. Let's see what kind of response we get - Steve is sending it from work as I write this.

In the meantime, I ran into an old neighbor who as part of pleasant coversation, asked about the kids. So I told her. People likely don't want to hear the truth, but I have decided to tell them anyway. Some people probably think I am nuts, but once in awhile I find it worthwhile. And that was the case yesterday. As I explained to her our lack of services (to which she chimed in she was not a fan of Facilitated Communications) I recalled she used to be a school teacher, and furthermore, a school administrator. She was so patient as I told our story, and then she gave me a peice of advice - contact the state department of education and let them know. I realized she was used to dealing with school age or preschool kids, and this would make sense for that. But Zach was only two - and this isn't in the school district's jurisdiction yet. But, nonetheless, her point was a good one; someone at the state level was overseeing this, and they should be notified of our situation - so I skipped my 15 minute lunch yesterday and rattled of the following letter to the New York State Department of Health Early Intervention Program email listed on their website. Make no mistake about this folks, even though I blog, I do no consider myself a good writer - I know I am likely very deficient in grammar and whatnot - afterall, us engineers have never been known for our writing skills. However, all you English teacher types out there - feel free to give me some pointers, as I haved a feeling I will be writing a bunch of these letters in the near future.
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Subject: Availability of ABA services in Onondaga County

Our child was diagnosed with an ASD at the end of November while in Early Intervention services. As part of his evaluation a report was drafted which included the diagnosis and recommendations for ABA type services.

After notifying our Service Coordinator of the diagnosis and providing copies of his evaluation report, we requested ABA-type services. We are being told by our Service Coordinator and the Onondaga County Early Intervention Program Coordinator that these services are not available in our area under the Early Intervention program. They have stated that there are professionals in the area who do ABA type therapy, and he will be eligible for those services when he can be admitted into a preschool program this September. (9 months away)

Frankly, we are extremely surprised by this since both the "Clinical Practice Guideline Report of the Guideline Recommendations Autism / Pervasive Developmental Disorders Assessment and Intervention for Young Children (Age 0-3 Years)" sponsored by the New York State Department of Health Early Intervention Program and the "Autistic Spectrum Disorders Children Under Age 5 Onondaga County Resource Guide for Families and Professionals" both specify that:

"Behavioral and educational interventions are currently the predominant approach for treating children and adults with autism."
and
"It is recommended that principles of applied behavior analysis (ABA) and behavior intervention strategies be included as important elements in any intervention program for young children with autism."

More than two months have now passed since my son's diagnosis. Furthermore, it should be noted that he started in the Early Intervention Program in July of 2008, and has shown no progress using DIR/Floortime approaches from his SLP and only recently began OT services - a total of 2 hours of services compared to the 20 hour minimum recommended in the "Clinical Practice Guideline". We are told by the professionals that time is of the essence in getting our son the services he needs (as prescribed by two doctors) - that we need immediate and intense intervention, yet feel an unreasonable amount of time has passed for not getting these services.

This is a very difficult time for any parent, and is exacerbated by feeling that we cannot give him what he needs. If you feel you could be of any assistance to us or to Onondaga County in helping us get the necessary services for our son, we would appreciate any help you could offer.

Sincerely,

Dr. and Mrs. Steven Morphet

Is your product GFCF? WHOA!

My question:

To Whom it Concerns:

I have a child with food intolerances and would like to know if your product Westsoy Rice Milke Plain, is casein and gluten free.

Sincerely,

Leanne Morphet

----------- THE RESPONSE ---------------------------------------------------------------

Dear Ms. Morphet,

Thank you for taking the time to contact us regarding our Westsoy Product. We apologize for the delay in our reply and appreciate your patience. We strive to maintain the highest quality products and we appreciate your patronage.

We consider gluten to be in the following, barley, bulgur, couscous, durum, graham flour, kamut, malt , rye, semolina, spelt, triticale and any other types of wheat. We do not consider any oat products to be gluten free due to the fact that studies are needed to determine the long- term safety of oat consumption. The issue of cross contamination with oat and wheat remains a concern in North America.

We do not have lists of products that are specifically considered to be gluten free. Reading the label is the best way to check for the presence of ingredients which contain gluten. If gluten is an ingredient it is listed separately and not under "natural flavors" or "spices". Consumer health and safety is our number one concern, and we do not want to provide information which may not be accurate in the future.

The Hain Celestial Group's labeling declares major allergens (peanuts, soybeans, milk, eggs, fish, crustaceans, tree nuts, and wheat) and we follow the U.S. FDA's regulations. In addition, our labeling always declares gluten containing ingredients. We recognize the serious nature of the allergen issue and we strive to minimize risk.

Both major and minor ingredients of all products, as well as all processing procedures and equipment, are closely scrutinized and all potential allergen issues as determined by the Hain Celestial Group are declared on our labeling.

We assure you that strict manufacturing processes and procedures are in place and that all of our manufacturing facilities follow rigid allergen control programs that include staff training, segregation of allergen ingredients, production scheduling, and thorough cleaning and sanitation.

Thank you for your continued support. If we can be of further assistance, please feel free to contact us at 1-800-434-4246, Monday through Friday from 7AM - 5PM Mountain Time.

Sincerely,

George
Consumer Relations Representative

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I have a hard enough time reading all the chem/bio/genetic/neurological research I have been doing lately. Couldn't they just have said yes or no?

Not again....

So, we requested a new service coordinator through the county, specifically, one that was more attune to those who requested/needed ABA type intervention. We were assigned someone yesterday, and she called. I asked her if she had experience with ABA. No. *sigh* I feel like a schmuck that is just going to be viewed as a troublemaker at the county. 9 more months of this.

So I haven't posted as much as I was. I guess I needed a bit of processing time. Zach is no longer speaking again. All the experts told me that a regression only happens once. What is this then? He no longer says anything except "pop" in Pop Goes the Weasel. This is totally breaking my heart. I thought it might just be a short period, and that perhaps he was developing in some other way instead. But after nearly 2 weeks of observing this, I can say that I don't believe so.

It is so hard to keep motivated when there is no improvement. I keep wondering what we are doing wrong. I know that we need to be more consistent at home with what the therapists are doing. Steve and I continue into the evening with working with him - Steve getting him to point at pictures in books, me withholding food items or toys in an effort to make him request the items through gestures or language.

I am concerned that there is something in his environment that is contributing to this lack of speech/language. His eye contact has also greatly diminished, again. Could there be a need for further dietary interventions? (is he possibly allergic to corn or soy or nuts?) Is he somehow still getting casein and gluten in his diet and we are unaware?

Steve says that in life there is no coincidence. Well, the other day when doing my daily research on autism, I came across some information that said there may be a correlation with Lyme disease and autism. As I stumbled upon this information, my stomach felt a jab. Zach had a possible tick "bite" back in the late spring/early summer of last year - just prior to the regression. When I called the pediatrician's office to discuss, they told me that if there was a problem with the tick bite, I would notice a "bulls eye" rash where the bite was. I didn't notice a rash, but it was in his hairline, and may have been difficult to detect.

So, back to work last week after taking a brief hiatus to get my wits about me (that didn't work by the way) , I ran into a fellow employee who I hadn't seen in several months. We exchanged the normal pleasantries and then the dreaded question about how the kids are. Well, I told her our news. I then asked J. about her daughters, one of whom I knew she had some difficulty with. J's daughter has had depression and behavioral issues with no known reason, and lo' and behold, upon a recent visit to a new Dr., they discovered she had Lyme disease. They began treating the Lyme disease and noticed an improvement in her behavior. OK - this is where this feels like coincidence. She was going to give me info. about their doctor and the specific test for Lyme disease that they used since several of the tests administered in typical Drs offices are not sensitive enough to detect older onsets.

Mom took a spill late last week. She was trying to knock down icicles from the roof from within the house, slipped and fell on the sink in the kitchen. She was pretty banged up, with bruising on her abdomen area, and a laceration to her shin. Mom is on coumadin for her blood clot, which thins the blood. Any possible bleeding (they actually request you do not work with knives) is considered unsafe. She called the doctor and they told her what to look for. UUggh. What was she thinking? I am sure this has to be frustrating to her, someone who always kept her house so meticulous not being able to attend to all the things she once did. I wish she would let us help her more. As I called to check in with her a day or two later, we got to talking about Zach. Out of the blue, my Mom mentioned the tick bite, and if that might have anything to do with this. God does not have to send me any more hints - I get it - I'll get this checked out. Now to find a doctor who has the appropriate test.

Sometimes I feel more like detective than a Mom.

Yesterday's crisis, the neurolgist with the engineering background, and a possible pig

Everyone is so tired in our house lately - Steve, myself, my mother-in-law (MIL), even the kids. Constant phone calls, emails, visits, appointments.

I dreaded coming into work yesterday because I am so consumed with all things autism that I feel like I can barely contribute at work. Well, while in a meeting, I received a voice mail. My SLP (speech language therapist) called to cancel the therapy appointments for the day for her and my OT. She said that since we didn't have a signed IFSP she was not able to provide services and that she had consulted with our OT and told her that there was no signed IFSP and she would likewise not provide services.

A little background: an IFSP is an Individualized Family Service Plan and is basically the contract, between the county and the parents, of what services are to be provided and what goals are to be met. We had an IFSP for Zach that started in July. I had requested a re-evaluation (new IFSP) back in October (verbally) and again in November (verbally) and December (in writing). They waited to address the IFSP until it ran out on January 10. The therapists continued coming and all told me they would have to backdate. The county coordinator also told me this. I was fine with this - thinking it seemed standard to them.

So why did the SLP all the sudden make issue of it yesterday? And why did she feel the need to let the other OT know what she was doing? (They work for different agencies) Our SLP knows that we are likely going to discontinue her services soon when a new ABA-based team is assembled. She also knows that I had coordinated for our privately hired therapist to observe both her and the OT with Zach yesterday. (intent??)

She cancelled 45 minutes before his scheduled session. She did not consult the county coordinator about her actions. When I called the county program director - she said a verbal OK from the county would suffice the continuance of the services and to let the coordinator know that the providers had cancelled and needed a verbal OK.

I need some opinions here - does anyone find this to be unprofessional? Does anyone find that what was OK last week suddenly not being OK this week suspicious? I know contracts are contracts, blah blah blah. How come it was OK to not work under contract one week after a week of not working under contract?

I feel that there was some other agenda going on here - and that no one had Zach's interest in mind, and the most important thing: in the end, Zach got shafted. And because of this, I feel anger now that I have never known.

Our new private therapist L. had her first visit with Zach. He cried. That's OK. Glad I wasn't there to hear the crying. I just need to make sure I give her the support she needs because that has to be hard for her too.

We had our appointment with the neurologist yesterday. She is particularly interesting because she has an engineering background (she has a PhD and an MD which is not all too uncommon for a neurologist.) Her resume reads so impressively - BA chemistry Princeton , MS Electrical Engineering Boston, Dartmouth MD and PhD, Fellowship Mayo Clinic). She said she doesn't believe Zach is having seizures, but that she still suggests an EEG. She also said that observing Zach was a bit of a deja vus. Apparently, her own now 24 year old son, had many autistic tendencies as a child like Zach's. He is now in graduate school in Colorado after an undergrad stint at Carnegie Mellon. She said, "Just ad me into your cheering crowd." I love that she gave us that injection of hope that all may be OK. It made me feel immeasurably better after the crazy set of phone calls I had to endure earlier.

So after the neurologist, we went to my mother's for dinner. She had a particularly bad day - the pain is back after her nerve block and she was unable to sleep the night before. However, she a made us dinner of homemade spaghetti sauce, meatballs and sausage that I found an additional comfort in.

The kids had an OK day according to MIL. Sophia had her "wear your pajamas to school day" event which she got a real kick out of. Slowly I was calming, calming, calming.


When we arrived home, Sophie and I read a book. I then pulled out my new laptop to play a game with her. She seems to do much better with the finger board on my new laptop (thank you dear husband for such an awesome early birthday gift) than a traditional mouse. She really engaged playing the game on pbskids.org. I was so excited for her - and first thing this morning she asked if she could try it again. She has avoided using the computer for the most part because of having difficulties with the mouse, although she is fine with the keyboard. I was very excited for her that we found some way to work around this for her, although I still want to work with her and a traditional mouse.

While I was in the office with Sophie doing our cool laptop online-game thing, I heard a bunch of accolades to Zach coming from the family room - and something about the word "pig" (I think). He's never said pig before that I know. I was really excited and happy - although when I thought to ask my MIL about it today - she couldn't recall what he said. We are all so tired, it didn't surprise me that she couldn't recall.

MIL leaves Feb 3. Don't ask me what I am going to do then...

Tired

I just want to sleep and sleep and sleep. Three therapists coming to the house today - I'll be at work, so my mother in law will have to handle - plus taking Sophie to preschool. And then an afternoon appointment to the neurologist with Zach. I am not sure how much more I can handle at work. I have little ability to concentrate; all I ever seem to think about are the kids, autism, therapy, etc. I am totally engrossed in this stuff. I thought work might be a good break for me from the craziness, but I think it is just adding to the stress. They have been nothing short of awesome to me throughout this ordeal, I feel they deserve someone who can really produce, and it likely isn't me. *sigh* We could really use the $$ now with the private therapist thing. I want to go back to bed.