Revolving Door

What a whirlwind of activity on Friday - here are the therapists for the day:
H. then M. and B., then and interviewee for this summer showed up K., then D. showed up for Sophia, then C. showed up for Zach, and finally L. showed up in the afternoon. That is 7 therapists in one day folks. I can only imagine what my neighbors think with all this activity in our driveway/parking lot. My head was spinning. I managed a cup of coffee and a banana throughout all this.

There was so much being said to me, and so many women talking to me I just wanted to run away at some point . I am not used to being around women, and it was really hard for me to handle. They talk so much and so fast! (I am sure I am like this too BTW) I felt like I was in a cyclone at times. I definitely get where guys come from now when they talk about "yippee" women.

Part of my issue is that I do have a hearing comprehension problem - as a child, my mother used do tell me I needed to listen better - and I thought I did have a listening problem. I read book after book after book on how to be a better listener. Then I realized I am a partial visual learner, and that I easily get overwhelmed with a lot of words being thrust at me, and lose comprehension. Oddly enough, words can flow out of me like water (so many people have told me to be a lawyer). I have always had problems with understanding innuendos, being able to figure things out contextually, the subtleties that a lot of people pick up in conversation. I need clear and concise (organized doesn't hurt either) descriptions of things. Gosh - I suck.

Back to the topic at hand, Zach had a ton of people coming at him, and basically decided that he would make himself a necklace for me or is that on me? Get this visual in your head - he basically held on to my neck with both arms and hung off of me all day long. He did, at some point, take a nap, which allowed me the luxury of cleaning the house and cooking dinner for our company. He's 30 pounds. I think I need a chiropractor.

So Saturday, while playing dentist with me (he loves to stick his fingers in my mouth and touch my teeth) I said "teeth" to him and he said it right back. My mother was in the room to witness it. I laughed because I told her: "Did you hear that - he said teeth! Probably won't hear it again for another 2 years, but I will add it to the list anyway." And that's how that works.

While at my mom's - my sister and her husband came over to the house. They were eager to see Zach point, which of course, there was nothing he really wanted, except me, so he wasn't "performing". At some point, I did feel like I was trying to show off a trick by my puppy and not a capability of my child. A dash like a freak show.

Speaking of freak show, earlier in the day, my whacked sister (not the one with the husband) decided to stick herself in a conversation between my mother and me yesterday. As she began to yell at me about how I didn't understand neurologists (I was telling Mom how the last neurologist appointment went with Zach) she went on to tell me that her daughter is epileptic and autistic, but that they couldn't afford to pay for an official diagnosis. This is the same sister, who according to her "autistic" daughter, when I first notified the family of what was going on with Zach stated something to the effect that I was overreacting and trying to get attention for myself.

As I listened to her bizarre rant, I looked at my mother who just lowered her eyes to the spectacle before us. Then the doorbell rang - God saved me once again! He sent a couple of Jehovah's witnesses to talk to Melanie. While she was being "enlightened", I told my mother that my sister was whacked and I really didn't want to hear her nonsense and that if someone thinks I would choose this for myself they had to be insane, clinically and unequivocally mad. This is my family support: an ill mother, the once in awhile putting my child on display, too busy with his own life/mess to check in, and complete lunacy with a touch of bizarre jealousy love. *sigh*

Poor Mom was feeling terrible - I believe she caught our stomach bug on top of the unexplained swelling in her legs and sciatica. The kids loved spending time with her though. I have to cherish these moments, even if they are interspersed with complete and utter absurdities.

Relationships and Maintenance Mode

Tuesday was a good day for Zach. Wednesday... well... not so much. He is feeling fine. He just was very cranky during his therapy sessions. Happy as a clam when I came home. What does this mean? Is this bad? For the therapists I suppose it is. I have read so many books where parents discuss how their children were oblivious to them and to anyone else, for my own selfish reasons, I am glad he is not like that. I feel love by the way he wants me to hold him and hang out with him.

This describes a lot of Steve and me. I am a huggy/touchy sort of person, Steve not so much. Steve is not one to dole out compliments - no "you are beautiful", "I like it when you wear this", "you're meatloaf is better than my mom's", nothing. I have girlfriends who think this is some sort of almost emotional abuse. (too many fairytales, my friends) I dated guys who told me I was the cat's meow for years, yet Steve is the one who was "the one". Why? Two things:
1) He doesn't compliment me (this is true) , but he also does not criticize - really. He has never told me I was stupid, foolish, or WRONG. He does not point out my faults ever. (I am likely totally aware of many of them.) I know he is unusual.
2) He just wants to hang out with me and that's all I need. He does not tell us often that he loves us, but, for the most part, we all know it. This is, to me, the ultimate in demonstrative. He is there for us and just likes to hang with us. He doesn't play softball with the boys, hang out at bars with the guys, stare at a TV watching overpaid, steroid-laced athletes. He cooks us dinner, and hangs with us.

I am not sure how many other people would be comfortable in a relationship like ours. Maybe I am as unusual as Steve. Are we creating some sort of weird class of kids whose values in relationships will be so contrary to what is deemed normal that they will have difficulty cultivating their own friendships? Probably. Lord knows I was not terrific at making friends (true friends) most of my life, and if I had to place a wager, Steve wasn't Mr. Popularity either. Don't get me wrong, we both have friends - some of who have been with us for a long long time - but it is not our forte.

Will Zach have friends? This is the most bizarre question I can ponder - and probably most of you who don't have kids on the spectrum will never relate. This concept blows my mind as much as what caused Zach's autism.

So. things are not really in a steady state, but with this stomach bug continuing to plague us, I have just decided to lay low and get done what is essential right now. I cannot think - I cannot act, I can only manage to get by. So things are likely falling off my plate that I should be attending to, but I cannot worry about that right now.

In the world Steve and I work in, April 1 is mid-year filled with mid year reviews, Program Management Reviews and the like. This means we have a lot going on at work that has to be attended to. Basically, work has to get done right now, no excuses. If you have to stay late, get here early, come in on the weekends, take it home, you do it. No stress here.

Can't wait to get the report on how Zach did for today. Do I send him to school or continue the home-based program? This will be the thrust of my thoughts for the next few weeks, I am sure.

Coffee

I feel like such a drama queen now. Zach appears to be back to his jovial self. Of course I left him in a heap on the ground with tears streaming down his face and something that sort of sounded like Momma coming from his mouth this morning. (No working Mom guilt there, eh?)

Therapist L. called to tell me he had a good session and that as she was exiting, he even said "coffee" as clear as day. Totally non-functional - but he was listening to the conversation between the sitter and the therapist about coffee and he chimed in. I love it.

Tomorrow was supposed to be his meeting with the school district to discuss what is to come, but with the stomach bug going around, I decided to cancel the meeting rather than wait and see how we are doing tomorrow. (I believe there will be several parties present, and I really don't want to cancel last minute with so many people involved. Just play it safe. ) This is probably a good thing, since I have done little in the way of preparation for the meeting.

Damned stomach bug is hitting me pretty hard. No more fever - but cannot tolerate much in the way of food. I basically want fruit all the time. Weird. Steve thinks he had the bug 2 weeks ago, and Sophie started running a fever again yesterday. What is with that? Zachie is better and that makes me feel good.

In an effort to give feedback, I decided to send a note to the county on Zach's progress. Here is how it read:

After all the work everyone did to get ABA in place for us, I thought I would send along an update on how Zach is doing. The "team" officially kicked off March 2, and there were some tears about all the new people coming and going. Nothing too bad that the therapists couldn't handle. After getting to know Zach, H. and I talked about what we would like to see Zach work on. We have been trying since July of 2008 to get him to point, and he did it with Steve when looking at a few books, but never any other time. We decided to start here.

Well, as of March 14, Zach began to independently point! We were shocked. I don't think we expected this so fast, likely since we had been working on it since July. H. and L. gave us and all the people who work with Zach (including 2 of our babysitters) instructions on how to carry out their plan - and it worked. I haven't seen my husband smile like that in a very long time; it was wonderful. He has been ill this past week, and fairly cranky (he had flu like symptoms on top of an ear infection) yet he has maintained the point. Sometimes he needs a little prompting, but he appears to be getting better at it everyday.

12 days to get something that we had been working on for 8 months. I am more confident then ever that Zach is getting the approach he needs and will continue to surprise us. We are so grateful to H. and L. that words cannot express. I think our OT para was even surprised. Our new SLP is open to seeing what this is all about, and we appreciate her attitude.

Please share our story with others (especially anyone who helped get us this team) that we have already seen progress and are very happy. If you ever need a parent representative, feel free to contact me.

-Leanne Morphet
very happy momma to beautiful Zachary

Break down - POP

Last evening I made plans with my dear husband's encouragement, to go to the Mountain Goat training run in downtown Syracuse. The Mt. Goat is a very hilly 10 mile race, and they do training runs starting in March to help people ramp up. They are fantastic and it looks like they had 300-400 people there this morning. I called my therapist L. up and see if she was interested since she is supposed to be training for a 1/2 marathon. She met me downtown with some of my other friends, and away we went. They announced that the course was 5.5 miles - and I was nervous; I haven't run in several months mind you, and two times out at 3 miles in the last 2 weeks is not considered adequate preparation.

Well, it didn't take long to realize this was going to be a tough run. At some point, I told L. to take off, that I needed to walk. Eventually I finished, after run/walking the course. It was the worst run I had ever completed in my life. L. and I had planned on Starbucks, but I had to pass. I noticed that the 26 degree weather had me extremely chilled, more than ususal. I decided to run and get gas for the car, which I did. Then I stopped in a store. Then I started crying uncontrollably - I just broke down. I pulled the car in a friends drive way and went to the door, no one home. I could not understand why I was so upset. I called another friend, and left a message on her answering machine. Then I hauled off to Pier One, where I allowed myself 3 minutes of crying and in I went. I worse my sunglasses in the store. After feeling I had given myself adequate time to calm down, I asked a sales girl for help. I spent $250 - which is extremely unlike me. My friend K. called and said it was OK to stop over. I went over to her house and told her how I freaked out and how I wasn't sure why. I actually joked that perhaps it had something to do with the terrible run that morning. After chit chatting with her and her husband, off I went home. It was a rough ride. I thought for sure I was going to hurl.

I arrived home and stuck the thermometer in my ear: 101.9. Ahhhh. So that explains it all - not that I don't have stuff to be upset about - but the way it happened really stunned me. When I have a fever, it always kicks my butt. That explains the awful run, too.

Even though I cannot eat, and feel cruddy, it feels kind of nice to lie around the house with the kids, all of us in our jammies. Zach appears to be feeling much better, and Sophie is getting there. Mind you - according to the doctor last weekend, Zach just had an ear infection. Steve told me that she never looked down his throat, or feel his abdomen. freaking doctors.

Mom's furnace kicked out on her last night bringing the temperature in her house down to 52 degrees. She didn't call the furnace company until the morning. She feels awful from not being able to sleep, and her legs are incredibly swollen. The doctors decided to take her off some of the pain medication, because they think it is contributing to the swelling. She is in a decent amount of pain, and I am totally unable to do anything to help her.

Zach said "Pop" for me yesterday. He also said "up" today. He is pointing fairly well. He is not as cranky. I am getting that hopeful feeling again, as I am reading a book which is the story of a young man and his quest to fulfill his dreams of going to college and other vignettes.

All this cruddy stuff is happening, am I crazy to think things will get better? I often wonder what I did to have such bad luck - but I also think how lucky I am to have two beautiful children who Steve and I love, a great husband, employment in a bad economic time, and the ability to be a reasonable advocate for my kids. While there are several people who have disappointed me, I am meeting some exceptional people on this journey whom I would have never known. That would have been a terrible loss to not know such souls exist in this world. They have little reason to help us much as they do, they are not family afterall. What could make me feel more hopeful then that?

Still at 102 degrees. uugghh

Shakey

Zach is still pretty fussy. However, just a few moments ago I received a text from our therapist L. and although we left Zach screaming this is what her message said:

He is happy & playing with the game using the poles to fish and i'm turning it off and he is independently point to the on switch w/out me asking what he wants

Gotta love texting, eh?

Sophia is now running a fever, so we juiced her up with Tylenol and out the door we went. I feel like a terrible mother some times. She is with my niece Melissa, and she was OK with me leaving. I was not OK with my leaving, but am in such a bad place at work, feel like I have no choice.

We have recently found out that Sophie has had a little boy go after her, which initially sounded benign, but what we are finding out is actually more serious than we thought. This is really over the top now. I feel like I am a modern day chapter of the book of Job. We are in the process of trying to figure out exactly what happened, but I can tell you this much, from what I know, it is very serious. Steve and I are once again devastated at what is happening to another one of our babies. We are really not in a good place to talk any more details about this now, until we consult with some professionals on how to deal with this.

I have been trembling since we realized yesterday evening what was going on with Sophia. I am afraid that my faith is shaking as much as my hands are right now.

I don't think I can pray right now - can some of you out there pray for us - and more importantly for Sophia right now?

He quit saying "pop"

Yesterday, after arriving home, the house was relatively sane, but the sitter had obviously had quite a workout. I asked her if it was too much for her - and she said she could handle it. With all the various therapists coming, it gives her a break, plus he napped for an hour. Today he will have all his therapists, and Sophia will be at school, so even if he is fussy, she will once again get a break. Tomorrow with my niece babysitting might be another story.

I now have a correlation, that I wish I would have documented better: every time Zach becomes ill, particularly with fever, his autistic symptoms worsen. This morning I decided to sing "Pop Goes the Weasel" with him, in which I consistently was able to get him to say "pop" before. He said it once, sort of, not at the right time, and that was it, no more, no matter how many times I sang the song and prompted him. This has made me terrible sad. Are we still losing language and other skills? I will likely try to get a call in to Yale to discuss this some more.

We are scheduled to meet with the neurologist on Friday - time I had scheduled to come in to work and get some things done. Work is particularly tough right now, I am working with some new people, who have little clue about what is going on in my life, and have been somewhat difficult to work with. They have not told me what their expectations are, yet are dismayed when I don't meet them. I find this really frustrating, and wish I could go back to projects with people I know better. I feel horrible that I am letting people down, even if their expectations haven't been fully expressed. This is not the sort of person I like to be.

Next week, on top of the 25 hours of therapy, 2.5 hours of class that I have to attend with Zach, getting Sophia situated at school and her therapy, and normal life chaos of career-work, housework, cooking, family, life, etc., we are supposed to have a meeting with the school district, which they picked without consulting me, right smack dab in the middle of the work week. I am so-o-o not prepared for this meeting - we will likely have to make the decision of keeping the home based program or sending him to school.

This also was supposed to be a day that we brought Zach out to a doctor in Rochester who specializes in pediatric integrative medicine. She is board-certified in pediatrics and graduated from the University of Rochester residency program in pediatrics. Sounds like good credentials to me, plus other families have said they like her. I still don't know whether this is junk science/a scam, or if it is real. I guess the I want to believe that at least the doctor believes this is real. I would hate if this was some snake oil salesperson scheme. Only one way of finding out.

I feel overwhelmed with things to do and what trumps what. I need to get my work done, I cannot forgo finding out what his anomalous EEG is all about, feel great pressure about the school district, and do not want him to regress any further if there is indeed something medically going on with him (Lyme disease, candida overgrowth, food allergies/sensitivities).

Sophie said to me last night: "You need to teach me how to pray." I have no idea where this came from, perhaps from God to her to me. It was a rude awakening that although my beliefs are strong, I have not turned to prayer in awhile myself, and have been lax on our nighttime prayer ritual since adding Zach into Sophie's room. In the words of the late Father Joseph Champlain, "You tried everything else, why not try God?"

Rollercoaster

I contemplated deleting the last post after reading it. I feel like so many of you probably think I am awful. I have decided to keep it in for record keeping's sake. It was the truth at the moment, as unpleasant as it may be.

I left Zach to go to work this morning, screaming and clinging to me for dear life. It was horrible. The sitter and the therapist were both there with looks of surprise at just how severe his behavior is right now. I am so concerned that this is a behavioral change and has nothing to do with the ear infection. He doesn't even want anything to do with Steve for the most part.

Zach stayed up until 1 in the morning last night, then up at us at 7:30. 6.5 hours of sleep is not enough for a child, let alone a sick one.

Zach starts with his new speech therapist today. What a day to start.

If Zach's behavior is a change in behavior and not related to illness, we will have to take a few steps back and address this first more than the communication skills. I will likely ask the therapists for recommendations. I love my little boy so much - I just want to comfort him, however, there are other things in this world that I must do, and eventually that he must do. Wouldn't we all just like to be held in our mother's arms all the time?

I told him this morning that I loved him, but that I didn't like the way he was acting. I would guess that he didn't understnad my words. I held him and hugged him and told him that everything would be OK, and then I left for work.

I don't cry as much as I thought I would. Maybe that isn't good? This whole thing is such a rollercoaster ride of peaks and valleys - mostly valleys lately. I love that he was pointing, but now with the ear infection/change of behavior, he is barely pointing although he has done so. I try to find hope in that he still has done it in such a hard time.

I wonder if he is ill - if something more is going on with him than just an ear infection. Is he in pain and that is why he is so cranky? I hate this. I absolutely hate this. Time for another doctor.

Hit the Wall

I know I have officially hit the wall. I think I may have referred to this before, the wall is the point in running a marathon, usually mile 20, when you just totally lose all energy and strength and you feel like you cannot go any further.

Today, I lost total and all patience with Zach. His ear infection, the accompanying fever, and constant throwing up has left him extremely cranky and clingy, and you guess it, this static little being is stuck to one an only me.

Steve and I went out to dinner Friday night after our therapist L. offered to babysit for us, knowing we had not been out alone in a long, long time. We went to a restaurant only 5 minutes away. I broke my GFCF diet for this one night, and ate voraciously and happily. I felt like a whole person for the first time. I could see Steve feeling at ease like I hadn't in such a long time. It was terrific. Not used to getting much time, we were not leisurely dining although we did the full 4 course dining thing of appetizers, salads, entree and desert. We were gone for a little over an hour and a half. We came home, feeling almost giddy.

The moment we walked in the house, all bets were off, there was puke in the laundry room, Zach was wimpering, and our poor therapist L. looked worn. I felt so terrible. We didn't know what was going on at the time - and thought he had a stomach bug. It was the next day that we found out that he had a pretty nasty ear infection.

I spent that night and the next on the couch with Zach trying to tame his fever with suppositories and wet washclothes, since he refuses to swallow any medicine - even when put into drink. Needless to say, I have not slept as much as I wish.

During waking hours he cries and calls for me, and screams if anyone, including Steve, handles him. On top of it, he doesn't like for me to sit down with him, and wants me to walk around with him in my arms. It is like colic all over again - except with a 3o pounder.

Steve gave me a break yesterday, and I took Sophie to the Shoppingtown mall to go to the library and the play area. She had a blast, and I was so happy to have some one on one with her. As she was playing in the play area, a little blond boy about Zach's age came in with his older sister. I couldn't take my eyes off of him. I felt knives going through my heart for the first time. I could not believe how jealous and hurt I was. After a quick jaunt to look for Easter clothing, we went home.

After another night on the couch, he clung to me like glue, not even letting me go to the bathroom without screaming this horrible scream. He coughed so much I thought he was going to choke himself. As Steve went out to run a few errands, I refused to hold Zach so I could spend some relaxing time cleaning dishes and windows, doing laundry, and sweeping the floor. Zach roared. And then it happened, he hurled all over me.

As I was cleaning up the hurl, he went into the pantry and grabbed a bag of crackers and dumped them on the floor, and smashed them to smitharenes. Pictures of the little boy from the mall kept on coming into my mind. Steve walked in the door, and was immediately dismayed at the mess he saw. Zach screamed and whined, while Sophia had her own complaints. For the first time ever, I realized I didn't like Zach - and that if this was to continue, I won't be able to handle it anymore. Constantly the screaming, no idea what he wants, trying to keep up with his messes. I guess this feeling shocked me - I couldn't believe that I was feeling resentful.

I want to have a normal kid, I will not lie. I want to feel like all will be OK with him, and that the struggles we will have will be like everyone elses. I realize so few really understand what we are going through. My house is a mess, I am doing poorly at work, I am tired and unhealthy, and working my ass off, and I have no idea if he will ever be able to tell me thanks or I love you Mom or even wipe his own butt. It is extremely unfair, and for the first time I felt it was so - up until this point, I never asked "why me" - I just felt empowered by my love for my child to do all I could for him. I am so sad at my weakness. How could I feel this way?

He points!

The official ABA team began March 2nd and as of March 12 - he has independently begun to point! (They decided this was the first skill they would target.) We are so excited by this - he has been receiving services since July of last year, yet in 10 days of ABA managed his first skill already. I think Steve was a bit shocked. I on the other hand felt such a relief - that what I have been fighting for was really going to work. I think I was surprised at how fast this was accomplished after all the long months of nothing. Oh my gosh! HURRAY

Thank you God!

Zach has a pretty bad ear infection right now and is running a 103 degree temp. He refuses to take the antibiotics - and unlike a child with receptive language, we cannot convince him that this will make him feel better. We have tried to "force" it on him, only to have him hurl. We have tried to mix it into juice, only to have him refuse the juice, and then risk dehydration. The doctor wsa really unhelpful when Steve asked about how to administer this stuff to him - go figure a doctor who gives some sort of canned response, and when you say you already know that or have tried that, they give you the deer in the headlights look. *sigh*

Anyhow, even with Zach's pending illness, I am so hopeful that we are going to see great things from him these upcoming months. I may have a prayer service at the house, and will invite everyone to come. I have always felt that prayer when said by many gathered in His name is different, and have seen great things happen from it. I hope some of you can join us.

4 therapists and 2 contractors

We were supposed to have 5 therapists come over today - I cancelled one, and one agreed to meet Sophia at school. Phew. But we had a therapist at the house from 8:30 am all the way until 2:30 pm. We had a contractor here from 9 -10:30 am, and another contractor here now (he showed up at 3:15 and will be here the rest of the night. I realized that one of the hardest things about all this is that I just want to be home with just the kids once in awhile. I never expected to take time off from work to run so frantically around and have to deal with 5 therapists, service coordinators, medicaid waivers, special diets, doctors up the whazoo, and on top of it, no idea of what the future holds for my son. This is not what I thought parenthood was about. And for most, it isn't. Lucky SOBs.

36 minutes and 3 miles

I had a couple of guys gang up on me today at work. Just what I needed. Really. It was great - they guilted me into going out running with them during lunch hour. I managed a little more than 3 miles in 36 minutes. I feel good, and there are parts of my lungs I have not felt in awhile that feel like they have once again expanded. I also feel more alert. Do I not have the best friends in the world?

Also, had a talk with the company psychologist today - he supposedly has some connection to Joanie Mahoney, the County Executive for Onondaga County. I haven't talked to A. (the psych) since my original fears about Zach back in October. He kind of gave me the bony finger and told me to check in with him more often. Yeah. He knows a lot of people in the area. I really want to address some of the deficiencies in EI with the county more formally if possible. I am crossing my fingers for a meeting.

Zach has a cough - it started this morning. UUggh. One of my neighbors is a pediatrician - I am thinking of calling her and asking her to take a listen to the ol' lungs. He is my happy smiley boy - and last night he went to sleep at 10:30 and slept all the way to 8:30 this morning. Yes - I was late for work. I was so happy to sleep and Steve managed a good night's sleep too. Life certainly feels better when you can squeak out some sleep.

Trying to manage a date night with my husband tomorrow. We have 4 therapists and two contractors coming to the house during the day. Whoo hooo. What a day to eat some more of those bon-bons.

Only thing sad about going out to eat is that, for Lent, I have gone on the GFCF diet with Zach. I may have to take a night off to go out to a restaurant. Is that cheating bad? I am so excited to go out with my husband alone, that I think I will just have to make an exception.

Freaking doctors' offices

My problem with doctors isn't always the doctor - sometimes its the office. Mind you, I think that there are some terrific doctors out there with bad bedside manners, and vice versa, I think there are doctors with terrible or good office personnel and not so good personnel, and all of these permutations means that you are likely unsatisfied with your experience for one reason or another, and if you are happy, go play the lottery, 'cuz you are one lucky son of a gun.

Permutation1: BD BB BO
Permutation2: BD BB GO
Permutation3: BD GB BO
Permutation4: BD GB GO
Permutation5: GD BB BO
Permutation6: GD BB GO
Permutation7: GD GB BO
Permutation8: GD GB GO


We think we have permutation 7, type GDGBBO: good doc, good bedside manner, bad office. She gave us her business card with email address. Like this a lot and thank God. You'll see why in a sec.

Here is Steve's email and note the doctor's response afterward.
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Dr. XXXXX:

My wife and I received a phone call from the pediatrician's office concerning the results of Zachary's EEG. They had received the EEG results report and requested that we schedule a follow up consultation with your office. Unfortunately, so far, we have been unsuccessful in securing an appointment. (Zachary's pediatrician also unsuccessfully attempted to secure an appointment on our behalf.) Please advise us on a course of action in this regard. Additionally, the pediatrician's office stated that the results indicated an anomaly, but they provided no details. We would appreciate any explanation you could provide of the EEG results. We are aware that HIPAA laws likely prevent the dissemination of information through email. If FAX transmission is acceptable, please send to (XXX) XXX-XXXX.

Also, during our initial consultation, you mentioned an organization that trains service dogs. If you would, please provide its name and contact information.

Thank for for your time and attention in these matters.

Sincerely,

Steven Morphet

-----------------------
Dr. X's response:

?? this is terrible!!! let me talk to my office and call you back. am very dismayed...

A little upset

I received an email today from someone about a family who just got diagnosed, son age 3. I contacted the mother who is in a state of grieving for sure. The situation irritates me because this child was once again in Early Intervention for awhile before getting diagnosed, but that alone does not irritate me: Early Intervention told them to wait until the transition to the school district can take place, this May, before adding services. 3 months of continuing not enough services. Do these people not believe in what they do? The whole point of EI is to act early and act intensely to alter the course of these children's lives? And what do they tell this parent? Wait. uuggghhh.

The mother said that she thinks they didn't want to overwhelm her. I guess I thought that EI was for the child, not the parent. Why do parent's feelings take precedence over the child's welfare? If this was cancer, and you waited diagnosis and treatment because you didn't want to overwhelm the parent would this not be considered negligence? Why is this different?

I understand the difficulties in having to address this with parents, I really do. But there are still ways of dealing with this. First off, what about a reporting chain? Tell it to your supervisor and let them deal with it? Or how about recommend an evaluation by a developmental pediatrician and have him deal with it? Yes, it's deferring it to someone else - but that someone else likely has more experience doing it, and can deal with it better - but at least it gets dealt with.

There is never a good time to have a flat tire, and there is never a good time to find out your kid has issues. Don't delay the inevitable. Why not? Two reasons come to mind rather quickly:
1) Studies and anecdotal evidence show that early intervention WORKS and can make a big difference in the abilities of these children
2) Parents may kick themselves one day for not intervening sooner- and those feeling will be worse then the denial they may initially go through.

Another evaluation and the wall

Zach had his third evaluation today (of the we've got a kid on the spectrum type of evals that is). It technically is his 5th since July. 2.5 hours of pure fun, me in one room with Zach and two women (an SLP and a psychologist) and Steve hidden behind the glass with 4 others (a social worker, OT, PT, special ed and another psychologist). He did well, whatever that means.

He didn't tantrum a lot, and he stuck with all the the tests like a little trooper, although he wasn't able to understand many tasks presented to him because he basically has little receptive language. The psychologist told us that the cognitive testing showed that Zach has skills like his peers when it comes to visual testing, however, because of his lack of imitation and verbal communication, he shows a delay cognitively in those areas. Kinda knew that. Look forward to the report they will come up with. I must say that the team of people there seemed really great and that I would love it if Zach got to work with them. But they are not likely the people that he would end up working with. I asked the question that is perplexing me the most at this time: how do I know what kind of program is best for Zach - a school program or a home based program? Unfortunately, they explained that they are not likely to give us that sort of input, that it will rest on what we decide with the school district. Sending my 2 year old on a bus cross town to be gone all day is not making me feel too terrific - I have to decide if my feelings are motherly stuff that is gooey and wanting to nurture the little guy, or if it is some instinct that it isn't the right choice for him right now. I have decided to seek some comments from an independent party outside the people we have used so far - a professor at SU. Hopefully, she can offer me some guidance, because this scares the snot out of me, and I will likely have to make the decision with the next month. uugghh.

Sophie had the chance to go to a new "House of Bounce" that just opened up a few weeks ago. Our sitter A. said that Sophie loved it and that they had a lot of fun. She said she'll take both kids there next week - how cool is that? This is good - the PT told us today she recommends that Zach start receiving PT. Can't wait to make the request from the county for this one.

I am still feeling a lack of energy - having a hard time getting things done. Steve is back in town. Things are sort of looking up - we have a team of therapists coming to the house who seem very good, we are getting services mostly paid for, I have begun some advocacy work, work has stabilized. But I am not able to read right now, and feel like I can barely concentrate. I think I may be approaching what us runners call "the wall" usually between mile 20 or so where you feel like you cannot go on any further, but if you can push through that, you'll finish the final 6.1 no problem. I keep on using this analogy in my head to keep myself going, but I really wish it didn't feel so hard right now.

I would love to see a little more progress with him - maybe that could give me the juice I need to climb this darned wall.

Non-stop fun

No real notable progress with communication with Zach right now - although a few onesie words have come out here and there such as "big" and "boo". However, I think he is going through a growth spurt and motor development boost. He is too small for his clothes al the sudden and he is jumping all over the place - loved the trampoline at the gym class on Saturday.

No time to really post -Steve's away and it is just non-stop action around here. Unfortunately, Zach has been going to sleep really late, so I don't fall asleep until late, and then Sophie wakes up nice and early, and then either Sophie or Zach hasn't been napping - so there literally is no break. I am so tired I want to collapse. The past two days we have had 3 playdates, one class, a trip to say hi to Nono and Nana, a trip to the grocery store, cleaned the house, did the laundry, baths and normal kid maintenace, puke in the family room, and one overflowing toilet. Plus I had my first advocacy gig - at a resource fair at LeMoyne college where I had the opportunity to talk to some other parents with kids on the spectrum and other disabilities. Met some great people, and saw how the system can just totally suck too.

I have plenty to write about, but no time right now. Zach is getting between 25 and 28 hours of therapy a week, plus evaluations and doctors appointments. We are hopping. There are so many people coming to the house, plus Sophie, her therapy, and preschool - my head is just spinning. Maybe when Steve comes home? He gets in late Monday (around midnight I beleive) and Zach has a 3 hour evaluation teh following morning. uugghh.

Autism and TV watching

A friend recently asked me to comment on an article about a study that showed a correlation (although not causal) of TV watching and autism. There was also a more general article on TV viewing and young children found here.

I decided to post my response to her in case others are interested - with one caveat, I am not (at this moment at least) an ASD researcher and only have preliminary experience with research conducted associated with ASD. I note that my comments are what I considered informed opinions and not scientifically researched. This one day may change, but right now I am concentrating on two things: 1) getting Zach's services and therapies situated and 2) advocating for those parents who are not getting services they need. Steve and I do hope to get more involved in the research end of things eventually, as we both are technically research engineers. (I gotta tell you though, I am particularly good at "guessing" at a lot of this stuff, which is another topic.)

My response:
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Wanted to follow up to your question on my take on the autism/TV watching article. Well, I don't think that watching TV causes autism. I first and foremost believe there is a genetic predisposition to autism. I do believe there is a trigger for autism, but in our case, I am fairly certain it wasn't TV - we barely watched it for his first 18 months, and we don't have cable so we don't fit that mold. Cornell has also found a correlation of rain fall and autism as mentioned in that article. Does rain cause autism? Highly unlikely. However, there is something important to be gleaned from this information. I think the hypothesis of the children spending more time indoors is a good start.

I absolutely, 100% believe there is an environmental trigger to my son's autism. There are different "types" of autism so to speak, and my son was developing, what appears to be normally, and lost functionality (most notable his speech, eye contact, and ability to point). For children who are afflicted with autism that have this sort of regressive type, I feel that something in their environment pulled the trigger on engaging the genetic predisposition. Autism varies so much from one child to the next, no two kids are alike. I believe that the causes for regressive autism are likely varied as well: food allergies for some, vaccine intolerance for others, other allergies to chemicals, perhaps even a mild head injury that was one too many.

Many kids on the spectrum are extreme visual thinkers; they have photographic memories that are very intense - like watching a movie, and don't recall things verbally like most neurotypical people do. TV may stimulate this method of thinking and make the nontypical development more obvious, not more frequent. Just my guess for right now.

I am not a big fan of plopping a kid in front of a TV, although I have no particular problem with the medium, but more the content. I HATE advertisements. That's why we mostly do PBS and videos at our house. They aren't trying to sell you something, and pure entertainment is not the theme, there is usually something educational in the content. No fluff - a waste of life's precious time!

My very long $0.02!

Strangers and abnormalities

Good news: Zach said "Momma" (although not to me) after seeing a picture on TV of a baby and its mother. He also said "bye" and waved to the paint guy who came to give me a quote. So excited! Paint guy has 3 grandchildren around Zach's age and was probably trying to figure out what all the big hoopla was about. If he spends a few days in our house, he will likely get some clue.

I left my house and my children in the hands of complete strangers today as I did yesterday. I am oddly OK with this. I have never left my children with anyone except family up until these last few weeks. As I discussed before, I have major trust issues.

I am really counting on these women to do a good job - and I have to say - I have a good amount of confidence in them. I think one of the hardest parts of this process is knowing that someone else may be better suited to help Zach other than his mother. This goes against every maternal feeling I have. I just want to cradle him in my arms, hug him, kiss him. Giving him to someone else to evoke more functionality feels very cold at times. But these women are all loving and maternal - likely why I feel so comfortable with them. None of them are in this solely for the money - and with the rate of pay, it would not be worth it anyhow. I have seen them all embrace Zach - and better yet, I have heard them say how Zach cuddled with them and how excited they were to be cuddled with. They are becoming more than strangers.

I have never adopted a child, but I know from talking to those who have that there is no difference between the love you have for biological children vs. the adopted ones. Love is a verb, not a noun. Perhaps so is family. These women are becoming more than professionals we have hired, and even more than friends, they are becoming family. I am near tears right now - because they likely have no idea how important to us they are, that they are making the difference between us losing our minds and managing our way through, that they very possibly will make a huge difference in his life. They are Zach's (and my) cheering crowd, and sometimes that motivation means so-o-o much.

I noticed I am extremely tired all the time. As soon as I go vertical, I am out. I want to sleep a lot, and am having to push myself to concentrate and get things done. I know what this means, and a few of you out there do too, I am sure. Steve knows the seasonal blues I get, and this is likely not helping things right now. He tries to take care of things around the house that drive me crazy. He doesn't ask, he knows the scoop. I really don't want to medicate, but the things I normally would do - particularly running - aren't available to me right now. I am trying to figure out a way to get running back in to my life, because I have always found running to be my natural Prozac. Can a few of you say a prayer for me? I have so much work to do, this is not a good time to be running out of juice.

The neurologist office was being difficult (even to our pediatrician's office) and I finally received a copy of the report about his "abnormality". Steve googled term by term the report and feels that he likely is more normal than not - that the few "spikes" they refer to that are "suspicious" could likely be found on anyone's EEG. Still waiting to see if we will get an appointment to have the neurologist hopefully say the same thing.

Asteroids

Zach had an OK day today - especially for how busy it was. He had both ABA therapists over plus his one class. He wouldn't say bye-bye - but he did say "pop" and "eeze" as in please. He also pointed a few times today - once completely on his own, and a few times with some prompts from the therapist. Day one of the ABA trials down. How many more to go?

I think Steve captured the feeling well when he described our lives lately: it's like playing a video game at Level 50. I immediately thought of space invaders. Can you just hear the noise as they are about to barrell down on you and squash you? I realized that was the right sound (stamping feet about to crush you) but it didn't truly capture the esssnce of our current experience. Asteroids - the great Atari game of the 70's does; the darned asteroids are flying fast and furious at you from every direction. Unlike some of today's games, video games back in the 70's didn't have end, the objective of the game was to die with a really high score. Some managed to outwit the game and get it to roll over (hit the maximum score, which then reset to 0), but no one actually "won" at asteroids.

Steve is out of town for 5 days, and Zach is supposed to go in on Friday for his follow up appointment with the neurologist- at least we think so - the doctors office doesn't appear to want to tell us when in their schedule they can fit us. Our one therapist is banking on Zach's first word he uses consistently to be of four letters since that was what was flying out of my mouth when trying to deal with this doctor.

I received a note home from Sophie's OT today after a particularly difficult day for her. Sound was really troubling her at school, and she was constantly putting her hands over her ears. We are looking into sound therapy for Sophie to see if this helps. I'd post info about it - but that would mean I would have to find the info in the 10 foot high stack of papers in the office I keep looking at. I need to hire a babysitter and clean the house. I wonder when I will finish the taxes?

Two therapists and two classes today. I was basically with therapists from 8:45 am until 3 pm. I managed to swallow some peanut butter and rice with a glass of water for lunch (mmm, yum). No naps for the kids. Apparently it is much too entertaining to watch their mother get into some sort of vertigo. I am still trying to calm after all the activity.

Mom's appointment with her oncologist was today- and I am terrible and didn't call to check in.
It almost slipped my mind. Now it is too late to call.

A doctor we went to see told us Zach may have an allergy/sensitivity to polybutylene. The doctor wasn't even sure what it was. After googling it, we found that it was a plastic used in plumbing inthe 80's and 90's. We weren't sure if we were believing it at first - but I had a plumber come and see if we had such piping in the house. He went through our unfinished basement, and originally said, no. Then after telling him this was a possible health issue for our son, he said, we should check under the sinks. Sure enough, he claimed that the intakes to the faucets were polybutylene. We are getting a quote to see how much it will cost to get rid of the stuff.

Mom, Zach, Sophie, work, Steve going away - this sure does feel like asteroids. I wish I knew which direction to shoot at, I guess I'll just keep my finger down on the trigger and hope for the best.

No medicaid waiver for us today

OK. So, don't ask me why. But no medicaid waiver for us today. According to the coordinator, we will have to wait until Zach is 3. No where am I able to find such a rule documented. Whatever. I just have to keep on top of it I suppose.

Zach is getting into a lot of trouble lately - going into my drawers, playing in the toilet (ewwww....gross), got into the toothpaste and the dental floss. The house is a complete mess. And now for the funny part - I love it! He is acting like a typical 2 year old toddler this way. This keeps my hopes up.

He said apple the other day when looking at a picture that the sitter drew of an apple when trying to show Sophie how to say apple in Russian. (Our new sitter is fluent in Russian - how cool is that?)

Zach is hopping around the house lately a lot. This is also really cool - he regularly gets both feet off the floor. Just what he should be doing. Also making Momma very happy.

I have been a little down lately. Maybe I outpaced myself and just need a little recovery. Maybe it's the fact that I am on Zach's diet now for Lent. Maybe it's the fact that the EEG results showed something and I cannot get it out of my mind.

I love my kids so much. This is just not what I anticipated for parenthood. I am trying to enjoy them amongst all the chaos, but sometimes I find that I am more worried about stuff then about if they are having fun. I really would like to take Sophia ice skating today, but Steve is at work, and I think it would be a bit daunting to have to carry Zach and try and help Sophie ice skate. Why is Steve at work? Becuase when your concentration is as wrecked as ours has been lately, you gotta make it up somehow. We need our jobs to pay for the therapists too much to get into any trouble at work. Yesterday I went in, today Steve went in. Sophie just asked when he will be home.

Let's chalk it up to a long, cold, grey winter and hope that spring and the sunshine will take care of business soon enough.