Sacrificing sleep for blog therapy

On Monday evening, JF's PEP teacher will visit us at home. We've had a few home visits already, so I know what to expect. But this time, I've done my homework. I finished reading Autism Spectrum Disorders by Chantal Sicile-Kira a few days ago.

Here's my review, having read no other autism books for context: It seems like a very thorough reference and introduction to the subject, but it seems to just skim the surface. It whetted my appetite for more information on ASDs. Maybe this is exactly the kind of book I needed to read at this point, because I want to go out and buy half of the other books this book listed. Maybe there is no way to put all of the information into one book.

I get the impression from blogs and from this ASD book that I shouldn't be complacent. I really like JF's PEP teacher and I believe she has been doing a great job with him. He has made a lot of progress since he started PEP in September. But...? The NCLB Act was not fully funded; Therefore, by definition, the school system can't be doing all that it should be doing for my son. Right? Also, an Advice for Parents article says, "There is general agreement that...the interventions should involve a substantial amount of time each week, between 20-40 hours...." JF gets only 15 hours a week.

So perhaps I should investigate how JF can get more therapy. The problem is that we both work outside the home now. My husband was a stay-at-home dad until November 2005, when JF was 2.5 years old. We enrolled JF in daycare at that point because we were starting to worry about his development and we were hoping that he just needed to socialize with other kids his age. PEP seemed like a godsend, because they pick him up from daycare at noon and drop him off at daycare four hours later. If we were to sign up JF for more therapies, one of us would have to quit working to chauffeur him from therapy to therapy, and to manage those therapies. I would want to convince myself that this was necessary before we considered it. But there is no yardstick, as far as I can tell, that can tell me whether this is necessary, for JF.

There were some therapies/treatments described in the ASD book that would not require one of us to quit working: All of the dietary treatments and the Irlen lenses. I think we'll investigate those first. I'll read more books on the subject. Then maybe I should make an appointment with a developmental pediatrician, someone who has experience with ASDs, and ask that doctor for guidance. JF has an appointment with his neurologist at the beginning of March to discuss his recent EEG. Maybe that doctor could also provide some guidance.

Meanwhile, we're switching him to a different multi-vitamin. He's been on PolyViSol since he was a baby, currently taking 1 ML per day. A few months ago, I tried to switch him to Flintstone's chewables, but he apparently didn't like it. (Maybe it was a texture/sensory thing.) Now we have L'il Critter Gummy Vites. When we bought them, I vowed, if JF doesn't like these, I'll eat them, because I hate to let things go to waste. Fortunately, JF likes them. The percent daily values are over 100% for some things for the 2-4 year group, but below 100% for the 4 & up group. I don't like to go over 100% with vitamins, especially the fat-soluble ones. So, until his fourth birthday in May, we'll alternate between the PolyViSol and the Gummy Vites. The ASD book has a paragraph about the benefits of vitamin B6 and magnesium. The Gummy Vites have twice the B6 as the PolyVisol. Neither one apparently has magnesium. Maybe we need to look for gummy vitamins that have both. (And then I'll have to eat these Gummy Vites.)

I also want to ask the PEP teacher what kind of therapies they are using in the PEP class. I think she mentioned ABA. When I told her how I was teaching him to dress himself (very patiently, little by little, showing him hand-over-hand what to do, and praising each little success), I think she said something about ABA. I know she uses PECS. She gave me a sheet of picture symbols to help with the potty-training. (It did help!) And she has been saying since the last home visit that she will give me more picture symbols for his daily activities. (Maybe she'll bring them on Monday.)

But this ASD book describes many more therapies than just ABA and PECS. I need to dig up JF's IEP and read it again with my new knowledge. Maybe it will make more sense to me this time. Then, on Monday, I'll ask the PEP teacher about the other therapies listed in this ASD book.

So now I have a skeleton of a plan. I feel a little better.

But I still wish I could figure out how much help JF needs. We believe he has an ASD, but we don't know which one (classic autism or PDD-NOS). Here is a snapshot of what JF can do now (based on the ATEC form in the back of the ASD book):

Speech/Language/Communication:

• He answers correctly, "What's your name?" He might answer correctly, "How old are you?" with the word three or he might get distracted by the effort to hold up only three fingers.
• Follows many commands, such as, "Bring me your shoes" or "Put your crayons away."
• Recites many books, such as Dr. Seuss, and songs, including Happy Birthday To You, You Can Do a Lot Under Water (Milkshake), Twinkle Twinkle Little Star, Let It Snow, the ABC song, and so on.
• Other than songs and books, uses many scripted phrases, such as, "Where's Daddy?" and "More sit on the potty?"
• Has been improving daily on explaining what he wants. He says, "I want..." and fills in the blank. He recently learned the usefulness of the word "this" in this context. If a toy that he wants is out of his reach and he doesn't know a name for it, he will point to it and say, "Please help more dis?"
• Otherwise, he does not ask questions. His speech is always meaningful and relevant, but only from his perspective. He does not participate in conversations.
• Often repeats exactly what you've just said to him, verbatim, with the same inflection. (Echolalia)

Sociability:

• Sometimes will ignore people. When I say his name, sometimes he will turn and look at me, but sometimes he won't.
• He cooperates very well, most of the time. Otherwise, he dawdles and gets distracted from the task at hand.
• He has eye contact issues, according to the county school evaluations, but at home, with his parents, he makes eye contact often.
• He shows affection in the form of hugs (even to strangers), and kisses.
• When I come home from work, he usually does not come to greet me. Once, however, he greeted me and showed me something ("Momma, see dis?"), which was a double shocker.
• Imitates! Actions, words, everything! When we tried to teach him how to spit out toothpaste, he started a bad habit of spitting, everywhere and all day.
• Likes being held/cuddled. He used to always back into a hug, and sometimes he still does.
• Rarely shares or shows anything (one exception described above).
• Has waved bye-bye since he was a baby, backwards.
• He hasn't had a temper tantrum in a long time.
• Has friends/companions at daycare and PEP, maybe?
• Smiles a lot.
• Insensitive to other's feelings. Currently not hitting his classmates and parents as much.
• Indifferent to being liked, maybe?
• Upset if parents leave. We have to reassure him, "Mommy/Daddy will be right back."

Sensory/Cognitive:

• Responds to praise.
• Looks at people, animals, pictures, TV. (Currently fascinated with the remote control.)
• Draws lines, squiggles, the first three letters of his name, and a smiley face.
• Plays with some toys appropriately, but not all. He often breaks pencil points. He demands that Daddy wind up a car for him, even though he has done it himself before. When he's playing with toy cars, he likes to spin the wheels. He'll try to spin anything roundish.
• Usually has an appropriate facial expression, unless he is hitting you. In that case, he's smiling as if he has just given you a hug.
• Does not understand stories on TV or explanations?
• Aware of his environment? Aware that his daycare is near his home. When he's upset, he'll look out the window toward home.
• Unaware of danger.
• Starting to show a little imagination?
• Initiates activities. He finds a toy and starts playing with it. He finds a book, hands it to you and says, "Read to you? Ank you?" (Translation: "Please read this to me. Thank you.")
• When handed articles of clothing in a certain way, can dress himself with little help.
• Curious & venturesome most of the time.
• Looks where others are pointing, but not where others are looking?

Health/Physical/Behavior:

• Recently almost potty-trained during the day. Still wears a diaper while sleeping. Might have one accident each day.
• Diarrhea when he's sick, which is about once a month. Otherwise, perhaps constipation?
• Sleeps through the night, unless he's sick.
• Some days he eats a lot, some days he eats little.
• He loves almost any carb (bread, bagel, oatmeal, crackers, cake, cookies, noodles). He loves PB&J sandwiches, grilled cheese sandwiches. He loves milk, cheese, & yogurt. He is picky about meat, veggies, and sometimes fruit. He refuses any form of potatoes except chips. He refuses any form of eggs.
• Sometimes hyperactive and sometimes lethargic.
• When frustrated, might bite himself. Sometimes pinches a freckle on his leg.
• Sometimes aggressive to others: Hits, pinches, slaps, kicks, and pulls hair. (We're working on this.) Sometimes he seems to do it as if it were a sign of affection. Sometimes he does it out of frustration.
• Destroys pencil tips. Draws on the walls. Steps on his toys. Otherwise not destructive.
• Maybe sound-sensitive. (Used to cry when visiting relative's house, which was noisy.)
• Sometimes anxious/fearful/unhappy/crying.
• May have had one seizure. Also has staring spells, which may be mini-seizures. (Waiting for results of EEG.)
• Obsessive speech! Much perseverating! "Where's Daddy?" "At work." "Where's Daddy?"
• Routines can be changed, and he doesn't seem to mind. On the weekends, he asks, "Ready for daycare?" until distracted by some other activity.
• Sometimes shouts/screams.
• Does not demand sameness.
• Sometimes agitated.
• Sometimes seems not sensitive to pain.
• Fixates on certain topics, singing the same song for days, or reciting the same book for days.
• His repetitive movements may have disappeared: He used to open/close doors a lot, but not as much now. He used to look at things with his peripheral vision while moving his head, but not as much now.

Wow, this turned out to be quite long. If you have actually read this post all the way through, you must be either married to me or very bored. Or both.