Rough Nights

Sam has had some rough nights over the past couple of weeks. I think he has built up a tolerance to the melatonin b/c he is waking at around 3am. He refuses to stay in his bed and he works himself up into a frenzy - jumping, running, stomping, flapping, and laughing. He crashes at around noon and sleeps a bit. I, of course, have consumed so much coffee by that point I can't nap myself.

I don't think medication is working for Sam. I always think I see something at the beginning of each new intervention but I think it is just because I am looking so hard I find things to hold on to. I am taking Sam back to the neurologist this week to see what the next step should be. I assume we will wean him off (shouldn't take long since he is on such low doses). I would like to try other options but she may tell me there are none. I know WANTING to medicate my child may sound funny but you have to realize that he cannot function in the world. His behaviors are not manageable. We have done countless hours of behavioral interventions with very little to show. He is still mostly non-verbal, pretty hyperactive and extremely impulisive/compulsive. I had a couple of therapists come look at him last week and they both agreed that there is more intellect in there than we can see but his stims and microsecond attention span make simply functioning impossible. They both felt that if there was any way to reduce his level of distraction, he would be able to do much more. I am not delusional - I don't think I have a little Einstein hiding in there but I do think he is capable of more. That is why I want to try more meds. My biggest fear is that he will still be like this when he is five feet or six feet tall. How could I possibly manage him? People tell me not to look too far into the future because things may change but his progress is sooooooooo slow and he is soooo tall that I don't think my fears are baseless.

I hope the neurologist has some options for us.

New Shoes

I don't know what is going on with Sam and his feet lately but whatever it is has made it necessary for me to by him lace up high top sneakers. A couple of weeks ago Sam began to obsess about wearing socks in the house. That was no big deal. He also began to compulsively remove his socks and shoes when was was outside. The problem? half of our backyard is mulch and he began to get splinters in his feet (which he refused to let be removed - and he can FIGHT). I tried a behavioral approach. He had to go and pick up his shoes and socks and go inside each time he took them off and he couldn't go back out until both socks and shoes (or sandals) were back on his feet. Literally a minute later they would be off again. Now you should know that we spend A LOT of time outside when the weather is nice. It is the only way I can stay sane. Sam is a disaster in the house. I found myself making Sam put shoes bakc on upwards of fifty times a day. Sometimes I would be busy with Maya and not catch it right away. He continued to get splinters. The frustrating (sad? puzzling?) thing was that he didn't like walking in bare feet. He would make a face and look like it was uncomfortable but the compulsion was too strong to resist. It is the same thing with his need to drop straws through the deck boards - he is happy to do it most of the time but every so often he gets upset and seems angry that he can't pull himself away from this self - stimulatory activity.

So today I changed strategy. I bought high top lace up sneakers (Target's Converse One Star Sneakers) and Sam can't get them off. If somehow he develops the attention span and the fine motor skills to untie double knotted high top sneakers then I will have to come up with a new plan. But I think we are safe for a while.

Little Caretaker

Maya, age 1, feeding her baby

Maya, age 2, "changing" her baby's diaper

My 2 year old daughter Maya has shown a strong maternal instinct since she could move. As soon as she had the ability to manuveur her arms and legs, she would feed spoon and bottle feed her dolls and stuffed animals. She now loves to "change" their diapers as well. She gets out her mini changing pad and lies each one down. Then she gets a baby wipe to wipe them and she tells me they have "tiny poo".

recently she has transferred some of this caretaking behavior to Sam. It both warms my heart and makes me sad. If he is crying, she gets a tissue and wipes his face saying, "Sam crying". She will hold the tissue to his nose and say, "blow". A couple of days ago I caught her in the bathroom with Sam trying to wipe him (Ew?). SHe could only reach his back so she was rubbing the toilet paper up and down his back. I finished the job for her and when he got up she said, "good job Sam". When Sam come in she sits down next to him and tries to help pull his shoes off.

It is foolish to think children don't notice difference. Maya has clearly noticed that Sam is different. SHe recognizes that at 5 he needs much more help on things than she does at 2. She also know his behvaior is different. Sometimes she imitates his stims - dropping a straw and flapping her arms while saying, "oooooooh". The difference of course is that she is fully aware that this is an imitation. Her pleasure from this behavior is just that she is copying her brother - there is no other neurological reward. SHe notices the differences but they just don't matter to her - yet.

Even though Maya is only 2, it makes me happy to know that she loves him and "gets" him. I expect that there will be a period of time when she resents him or, perhaps, is embarrassed by him. I won't fault her for that. He is a tough brother to have. I feel a little sad for her. Ultimately though, I hope the caretaker in her will overcome any bad feelings. I think this is why I really want her to have another sibling. She shouldn't have to be a caretaker alone.

IEP

I had Sam's IEP meeting last week. It went pretty well. I got something I wanted - Sam's parent training hours (his home program) will be switched to ABA hours so that hopefully Sam can generalize better. We are still in "disput" over whether Sam be with a 1-1 aide next year or in a 2-1 set-up (2 kids with 1 aide). I am 100% sure that Sam requires a 1-1 aide in order to make ANY progress but the program automatically switched them at primary level. We (the teacher) have to take "data" to demonstrate Sam needs to remain in a 1-1 situation.

Feeling better

Funny how I only seem to want to post when I am in a bad mood. I am feeling better today so I am going to try to post somethign more positive. Sam's poop issues are still driving me bananas. I don't know what is going on. I think it may be something Freud could comment on since I think there is some control/sensation issue involved. I am also looking at his diet. He has been eating more fruit and I wonder if things are moving more quickly than he is used to? I had to throw away the little trampoline we had in the family room last night. I want paint too detailed a picture for you but imaging play doh going through the spaghetti maker? Yeah. gross.

I finished grading a huge number of research papers so that weight is off my shoulders.

I am gearing up for Sam's IEP meeting. I just got his re-eval reports and basically he is functioning in the <1 percentile. That is pretty much as low as you can score. His scores have not increased in two years of this school program (although he has made some gains, they are not measurable). I am going to write a detailed letter tonight saying that I expect them to increase his services since clearly the program with which he has been provided is not the most "appropriate" for his level of functioning.

Maya is talking up a storm and adding new words every day. It is very cute to hear her in her crib yell out "Hear I come!".

Both kids are enjoying the nice weather. We have worked hard to set up the backyard like a playgrounf. Today will be fun for them.

People want to hear (yes, another pity party)

People want to hear:

that you are making the best of it

that you have faith

that you'll never give up

that Autism is a gift

that you wouldn't change your child for anything

that this experience is making you stronger

They don't seem to want to hear:

that your barely verbal five year old who seemd to be potty trained has started to regress. That he pooped in his underwear while stimming on the deck yesterday then took off his pants and ran through it a few times before I could stop him.

that later that same night he had more poop to make on the toilet (after starting in his night time pull-up)but the second I looked away he reached down to feel it and then wiped his dirty hands all over his clean pjs, his arms and his face

that last summer I worked my ass off getting him to string 3-4 very apraxic words together "I want ___________" and now the ability has completely disappeared.

that I literally want to poke my eardrums out sometimes because his vocal stims are so loud, so constant and so annoying.


These types of things either end conversations or result in an attempt at understanding (like: my two year old got his hands in his diaper once). I really don't know what kind of response I want. Maybe there is nothing anyone can say and maybe I shouldn't bother mentioning these things.


Here is the truth:

I am sometimes unable to make the best of it because sometimes even "the best of it" sucks

Faith? still thinking about that one

no, I will never give up but I have to balance that with accepting reality

Autism is not a gift. My son is a gift but it is delusional to say that something that takes away his ability to function, care for himself and communicate is a gift. Have I learned a lot? Sure. but I would trade it all for one conversation with my son.

If there was a magic pill that would take away Sam's Autism I would get it.

While this experience may have made me "stronger" in some ways, it has made me weaker, sadder, more lonely, and more terrified in others. I am not sure the trade off is worth it.


It has been a crappy week in more ways than one.

Yard Sales

I love yard sales. I am slowly becoming one those crazy ladies who makes a quick zip around a corner if I see a sign on a telephone pole. I get even more excited if I can park right next to the sale so that I don't have to bring both kids out of the car. I take a quick look around to see if the sellers have toddler clothes or toys and then I make selections or leave. I have found some incredible deals. Take last weekend - Mark was home on a Saturday (very rare) so I went to the post offic ewith just Maya in tow. We drove by one yard sale on the way home which was a no go. THe second stop was a hit. The family had about ten big plastic bins outside in the driveway. They were closed because it was raining off and on. I stepped out of the car and asked if they had children's clothes. They said yes. I asked if they had stuff for a toddler girl and they said "That's all we have here!" Their price? 2 for $1. A steal right?Especiallly considering most of the stuff was from The Children's Place. As I began to gather an armful of stuff, they offered me a clear garbage bag and said fill it and pay $5 bag. I filled two. I got two bags full of 2T and 3T clothes for Maya for $9 (I was short a dollar bill and as I counted change to reach the 10 they said 9 was fine). I think I may have actually done a little jig as I carried the bags to the car. I counted the items up when I got home - 55 items for $9. Why such a deal? I think they were worried that with the rain they might not have many people show up. Also, the wife works with autistic children and as we talked while I looked, out mutual interest came up.


Now just to let you know how obsessed I can get, I went back a little later to see what was left. I got another 22 item for $11. Maya has all the 2T jeans, shirts, skirts, sweatshirts etc she could
possibly want.


Some of my favorites:



Today I got a Parent's Magazine brand wooden trike and a toy vacuum cleaner for $12.