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

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Dr. X's response:

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