EEG in a few hours

It is 4 am and in a few hours I will drive Sam to the hospital for his EEG. I was supposed to do this a while ago but the whole idea made me want to pass out in horror. Keep Sam up most of the night? Put electrodes on his head (still don';t know how they will do that)? I gave myself a kick in the pants a few weeks ago and so we are getting it done on our break from schooll/work. I got 3 different sets of directions on when to wake Sam so i went with the set that allowed me to sleep until 2 am (well, sort of since the baby woke at midnight). Sam wouldn't wake at first, he just slept on me for a while. It has been so long since he snuggled like a baby that I let him stay for about 20 minutes.

Then he started to wake. Oh boy. He wanted "night night". He hasn't slept without melatonin for weeks and TONIGHT he wants night night. He cried, he yelled, he hit me, he threw things. He even tried to lift me at one point to get me to take him back to bed (he is 4 1/2). This went on for nearly an hour and a half.

Finally, I calmed him down with a waffle. I hoped it would trick him into thinking we were doing our morning routine. It seems to have worked.

At 8 am the hospital staff will attempt the EEG. I am trying to have confidence that the staff are used to special needs kids. They must have methods to get them to wear the electrodes. RIght? I will be royally pissed if they can't do the test.

So what makes a good outcome? If he has seizure activity then the poor guy might need meds and we have to worry about these seizures. If he doesn't have seizures going on then we have no new options. Nothing to add to what we are doing (which seems to be getting us nearly nowhere). I honestly don't know what I am hoping for. From what I understand the mostly likely outcome will be that the test is inconclusive and we will just (still) be tired.

Has anyone out there learned anything interesting from an EEG?

ZZZZZZZ - for Sam, at least

We changed to different Melatonin and upped the dose a tad. That seems to have done the trick. The type we tried came in a little glass bottle with a little dropper. 4 dropper = 1mg of melatonin. The dropper did not have a measure anywhere on it so there was no way to know if the dose was accurate. I switched to a different bottle (from the same company). The dosing is 2 tsp = 2.5 mg. Since 2.5 mg was our next dose, I gave it a try. Sam has slept through every night this week. He wakes early but I would rather have hims up at 5/6 each day than up racing around for hours in the middle of the night. The only problem is that Sam HATES the taste so I have to force feed it to him with a dropper every night. I have now ordered capsules that I can mixed with fruit puree.

Sleep seems to be benefitting Sam in a number of ways. The dark circles under his eyes are much better. In addition, his personality seems a bit different. He is more emotional but in a good way. He actually seems to feel it when he is scolded these days. He is more social as well. Even though he still doesn't play appropriately, he wants company; someone to sit near him while he stims. He also asks for "gickle" constantly (chase and tickle).

Now, if only I could get Maya to sleep soundly I would be one rested mama. Maya wakes at least twice a night and need a lot of comfort to get back to sleep. I would gladly bring her into our bed and just co-sleep but she doesn't want that. She wants me to hold her or to bring her downstairs to cuddle on the couch. The doctor told me to make her "cry it out" but the doctor hasn't seen Maya turn herself blue holding her breathe. I just don't have the heart. Maybe when I meet a deeper level of desperation.

A flicker then - snuff!

I felt a flicker of hope last week. The melatonin seemed to be doing the trick for Sam. He was sleeping beautifully. I began to imagine the possibilities - an overnight at my mom's or some other place. A vacation is still out of the question as Sam has no appropriate interests and he would run away if we were out in public but an overnight somewhere? With Sam able to fall asleep in a strange place? Not waking up and trashing the place and keeping us (me) up all night? The thoughts were uplifting. If we coulld get that far at 4 1/2, where might we be at 8?

He took a night off the melatonin on Saturday. He slept pretty well. I thought maybe his circadian clock had been reset. Sunday, he did not do well at all. Monday night I gave him the melatonin again. It didn't work. He was up from 2 - 4:30 hyper as ever - bouncing on his bed, yelling, laughing. He woke the baby multiple time and eventually he ran out an had to be taken downstairs. Neither Sam nor baby want dad when they wake at night so the burden is not shared. Light snuffed out.

I am giving him a higher dose tonight. If it doesn't work I am going to harass the neurologist. I am making it through work on very little sleep but I can't do this long term. I am wiped out, teary, and generally fed up.

Curcumin - Straws - Melatonin

Curcumin
The newest addition to our supplement routine is Curcumin extract. I read a number of positive reviews of it so I checked with our doctor. She thought it would be a good addition. Supposedly it is anti-viral, anti-yeast, natural chelator, blah, blah, blah. I read a lot about it before making the purchase and it is very safe. In addition, it has been found to help a number of other medical conditions.

It is not a particularly expenive supplement but, of course, I had to buy the one from Lee Silsby that is supposedly formulated in a 'special" way so it cost a bit more. It is amazing how easy it can be to get the parents of autistic children to spend money.

Sam had a little trouble with bowels movements the first few days. It seemed to make him go and go. Not loose or anything like that, just frequent. He had a couple of accidents but he bounced back soon. I can't say I have seen any major changes yet. He has had good reports from school and his speech therapist said he seemed more emotionally connected. I am reluctant to attribute that to a supplement without giving it more time.

I am giving biomed a little bit longer. Sam will be 5 in April and if I haven't seen any major changes by then I am begging for meds. I never thought I would even have to consider medicating my child but here we are. He can't stop stimming. It is so distracting and addictive to him that it prevents learning and appropriate behavior.

Straws

Sam's current obsession is straws. He chews them, bends them, and drops them into various cracks. If it is warm enough to go outside, he drops them through the deck boards. If he is inside, he goes upstairs and drops them down the sides of my sweater trunk on the upstairs landing. I wish he likes something more appropriate but that doesn't seem to be happening anytime soon. Hours and hours of home therapy and the kids still won't play with a friggin' toy. Unless of course he is throwing it. He is happy to throw toys.

Melatonin

Two years ago, the developmental pediatrician recommended melatonin for Sam's sleep problems. I know it is natural and safe but I couldn't bring myself to give it too him. I was petrified of giving him anything that induces sleep. He often wakes and bounces on his bed for hours. Usually he eventually goes back to sleep. About 2 weeks ago he started running out of his room and wanting to "play" at 2 or 3 in the morning. That, on top of the fact that the baby hasn't slept through the night in over a year, wore me down. I gave him melatonin last week and it worked like a charm. He slept peacefully all night. He woke early but well-rested. I hoped a week would re-set him and so I didn't give it to him last night. He woke up briefly but overall he slept well. I didn't give it to him tonight either so I am a little anxious to see how he will do. I don't know whether he will need melatonin most nights or just every so often like a reset button.

New Treatment and the Question of More Children

I posted a while back about starting methyl-B12 shots on Sam. We have to get them from a compounding pharmacy ($$$) and give them every other night. The first round went alright. I gave them to Sam after he went to sleep. He would wake briefly with a cry of indignation but them he would go right back to sleep. I noticed that he seemed to sleep better when he got the shots but there didn't seem to be any other effects. I was ready to quit them because of the cost. The doctor talked me into another round. We paired the second round with and addition of folinic acid to Sam's vitamin routine. That week, I got notes from he teacher about how much better his focus seemed. I don't know if that is really enough to draw a conclusion but I think we will continue for a while longer.

Our newest treatment is a series of Homeopathic formulations. The company that makes them is called Guna and Sam gets drops from 6 different bottles a few times a day. We just started so I don't have any clear results. Sam HAS seemmed more focused and social this weke but he is recovering from H1N1 so he might just be tired and in need of some comfort. The jury is still out on this one.

Now to the question so many parents of autistic children agonize over: Should we have more children knowing that there is an increased chance of having a child with developmental delays?

I have always wanted a big family. I always imagined having 4 or 5 children. It never occured to me that I might not be able to. I was never set on having biological children and infact I always envisioned a family of bio and adopted kids). I have been lucky enough have gotten pregnant very easily both times but I was ready to adopt right away if that had not been the case. Now that Maya is becoming more indepedent and seems to be on a normal developmental track, do we roll the dice again? do we look into adoption? International? Foster care?

Mark seems inclined to try again for another biological child. He is not against adopting but he resents the invasiveness of the process (he understands why it must be so but he doesn't look forward to it). He has always been interested in adoption (our niece is adopted) as well but the paperwork puts him off since his work schedule is already so busy. He also doesn't want to commit to an expensive international adotpion which could be a hardship for our current children. He is actually more open to the idea of adopting from foster car if we got that route..

I loved (and hated at times) being pregnant and part of me wants to jump at the chance to go through it again. Another part of me wants to throw our urge for another child into the adoption process. We have had a few conversations about it and we have not resolved the issue. I think we both agree that we want one more (after that we will see) and that we will wait 6 months to a year before we go for it. In the meantime, I am going to research foster-care adoption so we can discuss the facts. I work with someone who did this recently and I am going to try to schedule some talk time with him and his wife.

To all of you out there with children on the spectrum: What decision did you make about having more kids? What factored into your decision?

Sam was too sick to trick-or-treat (not that he knew what he was missing) but not too sick for a lollipop.

I wasn't going to dress Maya up (I was feeling cheap) but I found a hand-me-down costume in the attic and I am glad I did. She had a great time beeing a bumble bee.

H1N1 and Sam

Poor Sam is getting over the H1N1 flu. He started to come down with symptoms on Thursday afternoon and by Friday morning he had a fever of nearly 104. He had the nasal swab test (yuck) at the doctor's office and it came back positive. He went right on meds and he seemed to respond well. He was tired all weekend and he had some trouble sleeping but other than that, it wasn't too bad. He stayed home Monday to be safe and he didn't have school today. He goes back tomorrow. I know it can be serious for some but for him, it was ok - not fun, but ok.

Jackets Again

Apparently, the answer to the jacket problem is M&Ms.

Jackets

Sam has decided that he doesn't want to wear jackets or sweatshirts that can function as jackets. As soon as he sees one coming at him he flips out. If I put it on him, he flips out more - screaming, kicking, throwing things, crying - and won't stop until it is gone. He reacts in a similar fashion to new shoes. He also gets out of sorts changing from pants to shorts or short to pants as the seasons change. But, the pants/shorts and shoes issue usually passes quicklywhen he realizes he isn't getting his way. The jacket thing don't seem to be going away. Interestingly, he doesn't mind long sleeve shirts. It is fun.

Little things are so much more complicated

When you have a child with special needs, little things are so much more complicated. You can't just go to watch the high school football game or take a trip to the park without seriously scouting the layout first. You can't just get a babysitter and take a night out (assuming there is any money to go out or get a babysitter). My husband and I went into a panic tonight because he has to leave very early Friday morning for a seminar. It is my husband's job to get Sam up and put him on the bus in the morning. What to do??? If he were typical we could send him to a neighbor or something like that. You just never know what he will get into in a new house. My fear is he could potentially spend and hour jumping on and off their lovely coffee table. Once he is addicted to a behavior, he can't stop himself. Luckily, there is a girl in his class who lives nearby. She is much higher functioning but her mom "gets" the disorder. I am still worried that Sam will give her hell for the 45 minutes he will be there but we are up against a wall here. I can't take the day off because this is the first week of school.

Back to School

In 2 days, Sam goes back to school. I am very pleased with how the home ABA and Parent Training went this summer and I will fight to repeat this schedule next August. Sam will have a new teacher this year and I know nothing about her. I am preparing to write her a lengthy note (I know, I know) because I have a couple of concerns about Sam's transition back to school.

1 - When Sam left school he was on a 40 minute potty training schedule (meaning every 40 minutes a timer went off and he was taken to the toilet). At home now he is fully potty trained and if I try to make him go when he doesn't need to, he gets frustrated. He takes himself every 2-3 hours. I want to make sure they will respect the progress he has made and not fall back on data that is left over from July. The program is SOOOO data driven - for everything- and it frustrates Sam sometimes.

2 - Sam has made a lot of progress verbally. Prompted, he can say "I want ________". He is tought to understand but he is using more words. After carefully reviewing his last progress report I noticed that ALL Sam's expressive programs are for PECS. There are no programs that work on his speech. His speech therapy does a little but it is really only his private speech therapy that make him work to produce sounds. I want to request that they push him to speak a little more and back off on PECS a little. I don't want to get rid of PECS since he may never be fully verbal but I would like to push the verbals kills since he is trying so hard.

Maya will go see the babysitter this week. I wonder if she will remember? The last time she was there she couldn't quite walk and now she runs.

I will be heading back to work next week. It is always a mix of emotions for me when I go back. I am lucky that I like what I do but I miss being home with my baby. I always thought I would be home until my kids started school but finances haven't allowed that possibility.

Our Current Treatment Plan

I are trying a variety of approaches with Sam. Autism treatment has become a real money maker and so I try to approach each option with healthy skepticism.

Sam attends an ABA based pre-school for autistic children. Every child has a well-trained aide and the aides rotate evey 2 weeks. It is a public school program and I know we are lucky to have such a program in our area. During the school year he attends from 9 - 2:45. In July he attends the ESY program at his school from 9-1. It is a little too "campish" for me but the staff are all his regular teachers/aides and he enjoys it. Last year Sam had nothing in August and it was terrible. This year I fought for August services and we have 20 hours of ABA at home and 16 hours of parent training. It works out that Sam has 2 hours of contact with a therapist almost every day this month and it is working otu really well.

I also take Sam for private speech therapy once a week with a woman who does PROMPT. SHe is wonderful and get great things out of him.

We are also tyring biomedical therapies. Dietary interventions proved useless for Sam. He never really had digestive issues so it didn't surprise me that his gut didsn't seem to be a major factor in his autistic behaviors. My personal opinion is that gf/cf and other diet programs are worth a try for anyone with digestive problems but those gut issues are not just an autism thing.

Our biomedical plan also includes various vitamins and supplements. Sam takes a vitamin/mineral supplement made by Kirkman Labs. I didn't like their super nu thera vitamins but their kids multivitamin/mineral capsules have been good. Sam also takes the following in addition to that:
-extra vitamin D (his bloodwork showed he was deficient)
-probiotics
-prebiotics
-digestive enzymes (not sure this is doing anything but it doesn't hurt)
-DHA/fish oil

I saw the greatest improvement when I added the vitamin D and then again when we added the EPO.

Later this week, Sam will get his first B12 shot. Cross your fingers!

All of these supplements were recommended by a qualified doctor.
-Evening Primrose Oil

It Is Not all About Autism

While planning for, working with and advocating for Sam occupies a lot of my time, there is another child in this house for whom I am responsible. Our amazing daughter Maya is 14 months old and she is racing past milestones. She loves to play with toys, feed and kiss her "babies", carry "purses" around the house, dress up, and play outside. While Sam attends ESY this July, I get to spend one on one time with Maya - something I haven't been able to do since last July. This is the final week of Sam's ESY program and although he will receive some ABA in August, it will not be as intensive as regular school. I am relishing each day this week and trying to maximize my quality time with my girl!

Things I Hate to Hear

I check Autism message/support social network sites occansionally and I often read comments like "everything happens for a reason"and "this is what was meant to be". That kind of stuff really gets under my skin. Usually it is framed in some sort of religious context although not always. It troubles me that people can believe God just decided to start striking our kids with this devastating disorder. I DO believe in a very powerful life force that I call God but I believe what happens to us is largely due to our own actions and those of our society. I don't understand how some people can say things like "everything happens for a reason" or "this was meant to be" and still maintain that they have free will.

I know that sometimes these comments are just meant to encourage people to find the good in a situation. The belief that everything happens for a reason might lead one to search for that reason and glean something meaningful and positive. That is a good way to live but I still can't jive with some great wizard in the sky pointing his wand and saying "Autism for you!"

My son was not meant to be like this. It could be genetics, spontaneous mutation, pollution, shots, water filled with prescription drugs, or some other toxic chemical but I believe WE did this. WE, meaning my husband and I, possibly passing on some genetics defect, or WE, meaning society, poisoning our children. It is probably a WE that includes both of those things and maybe something more. Call on God for strength or comfort or peace but as the creator of Autism? No, that is all us.

Autism was not "meant to be". It just is.

Potty

We have something going on here that I really wasn't sure would ever happen - Sam is using the toilet! He has a week and a half off from school (he went back this past Monday). The school has repeatedly told me not to try potty training at home until he was on a 2 hour schedule at school. I respected their wishes until this break. I felt that putting him in diapers the whole time would be a waste. It took about 2 days for him to "get" that what he did at school was the same thing as what we were going for on the home toilet. Then he stayed dry the rest of the week. He won't request the bathroom but as long as I take him on a regular basis, he pees like a champ. Poop is a whole other story. I have known some typical children who took 6 months or more to poop in the toilet so I imagine I am in for months of undie washing. I happened to catch him squatting this afternoon though and I grabbed him and ran him to the bathroom. We had a success and he got a lollipop right away. I don't imagine that any light bulbs went off in his head but hopefully I will "catch" him as often as I can! SO, is he potty trained? No, but he is at least on the way.

Sam has completed his first full year of school. While I am very proud of him for the gains he has made, I can't help but wish they were a little more apparent. He understand more directions at this point. For example, I can ask him to pick somehting up and give it to me or to carry something from one room to another. There is still very little language. He can ask for help, more, chips, cookie, juice, shoes (to go outside), open, jump (trampoline), and a few other things but no phrases.

His behaviors are still very abnormal. He will spend hours pulling leaves and dropping them through the boards of the deck or stcking blocks and dropping them. At certain times he gets wound up and starts throwing then hand flapping again and again. When he does that we are holding his hands down at his sides and saying no throwing - it seems to be helping a little.

I, like many parents of autistic toddlers, hoped that school would lead to this explosion of development and Sam would be able to go to regular elementary school. That is looking less likely as he is now 4 and barely verbal. We will keep trying though. We have a great new speech therapist who uses the Prompt method. Sam responds well to that.

We are continuing with nutritional/wellness therapies as well.

Maya is doing beautifully - pointing, toddling, talking, playing, and generally being cute.

We are continuing sponsor a lovely little girl in Ethiopia. I wrote her a letter and sent pictures a little while back and I am hoping to write again this week. We are sponsoring through a group called Children's Hope Chest. Every time I shell out for extra private therapy I think about how for abotu a third of the cost of 45 minutes of therapy I can feed a child for a month. Amazing. Those of you that know me know I have always thought I would adopt someday. I don't know why, it has just always been on my mind. Of course, I never expected Autism. We will have to see how Sam progresses. I am still hoping for a success story.

DAN! appointment

We had our first DAN! appointment yesterday. It was much more pleasant than I expected. Sam's behavior was horrible, of course. He threw things around the office, ran around and climbed the furniture. The doctor, though, was very mellow. I almost went to another DAN practitioner back in the fall but my quack radar went off when she told me she would sell me lots of supplements before we got any test results. Also, she charged $500 for the first appointment and she isn't even a doctor! I cancelled the appointment with her. I heard about the woman we did go see from another family and they felt very at ease with her. She didn't try to sell me anything, she didn't insist we immediately go back to gf/cf or anything like that - she is going to wait for test results before making recommendations. We just paid for the office visit and we will have to pay for labwork -EXPENSIVE!!! I am not going to harp on all the prices though. I made up my mind before we went to the appointment that we were just going to go for it. Sam will be 4 in a little over a week and I feel like our window is closing. I am hoping for major gains before he turns 5.

Wondering When the World Changed

Some parents of autistic children seem so sure of the moment their child "became" Autistic. It was right after the MMR or the DTaP or a fever or seizure. . . They KNOW that nothing was the same after that incident. I have no such moment I can pinpoint. In recent months I had convinced myself that I could have detected his autism much sooner, possibly as early as 1 year old. Maya's incredibly social personality is such a contrast to what Sam's "mommy only" attitude was at her age. Her behavior had me convinced that something could have been detected sooner.

Earlier this afternoon I came across some photos of Sam when he was younger and all of these memories of the way he used to be came back to me. The first is a photo of Sam in his exersaucer as happy as can be. I remember when he used to play in it while I cooked and/or cleaned up in the kitchen. He would babble and bang around just happy to hang out with me.

The second is a photo of Sam in the cutest Hanna Anderson pajamas. He is probably 14 or 15 months in the picture. It made me remember the dancing game we would play in the kitchen when he was too big for the exersaucer. I would say "Sammy dance" and he would "dance" by running/hopping in place. Then he would stop and look at me. I would follow with "Mommy dance" and do a similar jig myself while he giggled. We would go back a forth a few times while pasta sauce or chicken simmered on the stove.

A third photo is one we used for Christmas cards whan Sam was about 19 months old. Sam is in his fleece one piece pajamas and sitting on a chair in the family room. He is beaming at the camera with one of the happiest grins you can imagine.

The final photo that prompted this reflection is a picture of Sam sitting on the stairs in khaki pants and a striking blue polo shirt. It was the day of our neighbor's son's first communion. Sam got right on the dance floor and bopped up and down nervously when we arrived at the party. In the picture he is looking right and the camera and smiling.

Looking at each of these photos I was suddenly hit but this feeling that he seemed so NORMAL at those times. He was not withdrawn, stimmy, or hyperactive at those times. While he may have shown signs of autism early on - not much pointing, difficulty waving/motor planning/imitation, running back and forth when he learned to run, slow verbal skills - he also did things to negate our concerns - sit on my lap for stories, snuggle, smile at other children, make his wants and needs known through nonverbal communication.

After 2 the signs became more apparent. I remember watching in horror as he lined up puzzle pieces in perfect arches across the carpet and tearing up as he stopped letting me read to him. As Sam grew from 2 to 3 his condition got worse. He started hand flapping, jumping, humming, bouncing on his bed for hours at night, losing the few words he had, chewing paper, and throwing everything in sight.

Looking at these pictures made me sad missing the little boy I thought I had but it also made me realize that I wasn't negligent missing his diagnosis in those first two years. There was so much he did that seemed "typical".

So when did the world change? I just don't know.

tomatis listening therapy

We are trying a new therapy called the Tomatis Listening Program. We are using the lovely people at Bergen Pediatric Therapy in Westwood, NJ. They are fantastic - I recommend them to anyone looking for a sensory integration approach to OT. Sam completed the first loop (15 days@ 1 1/2 hours a day). I haven't seen any gains in language so far although I my husband I and I both think we have seen him be more affectionate with my husband. I hope that with the second and third loops we see more gains. It is so hard to know what hterapies to try. Everything cost so much money and each one is a gamble.

In a few weeks we are going to see a "holistic" doctor who also know the DAN! (Defeat Autism Now) approach. DAN! is very controversial but I feel like we have to try eveything.

At the moment Sam attends an ABA based school for autistic students, gets Spectrum COmplete (a multivitamin.mineral supplement from Kirkman Labs), DHA/fish oil, and we just started a high strength pro-biotic (Three-Lac). We also do one private OT session a week.

Maya, our second child, is 11 months now at she is right on target with her development - such a relief. She makes great eye contact, responds to her name, points at things she is interested in, babbles, dances, crawls, pulls up and eveything else an 11 month old should do.

What are we doing differently? I refused the flu shot when I was pregnant. It contains mercury and if getting the flu during certain critical periods of pregnancy is a risk factor for the child developing schizophrenia (which has been found in studies), why PUT flu in my body on purpose? In addition, we are using a alternative vaccine schedule. She gets no more than one shot at a time and we are putting off any vaccines for diseases she won't be exposed to as a baby. She will get them but when she is older. We believe vaccines are important as a public health factor but after learning about what they contain, I can't see ever injecting a tiny baby with ALL of them. I recommend The Vaccine Book by Dr. Sears for anyone who wants to know what each brand of vaccine contains.

Quitting GF/CF Diet

Well, we gave it a shot. Sam was gf/cf for 3 months and I didn't see the changes I had read so much about. Sam got dairy back last week and gluten this past weekend. His tantrums are terrible on or off the diet. I am sad it didn't help because it is something I could control but it is much cheaper to be off it.