Tomorrow for the first time ever, my kids are going to watch a movie. The most we’ve ever been able to get through at home is 20 minutes (at a time) of Tangled on tv. They’ve never been through a whole movie at home, and have NEVER been to a movie theater. Our behavior intervention specialist from the county wants to help us expand our world and help us go places we’ve never been— we’ve never been to a movie theater because the following could happen—- the noise/ lights could throw Fred into multi-bite mode before the movie even starts. Wilma could stand up 15 minutes in and demand they change the channel because she wants to know what else is on. Either of them could stand up and bolt. With one kid, fine— but with both— one kid bolts and the other kid flops on the floor refusing to move and screaming like a maniac. For something like this, I certainly wouldn’t try it by myself with them, but we hadn’t been ready yet to try it even as a whole family— this is a good excursion for our specialist to help us. Wish us LOTS of luck tomorrow—– hoping it goes well and we see a good majority of the movie—- we’re seeing Muppets Most Wanted. I’m expecting lots of breaks and at some point Fred in the lobby playing with the ipad because he’s just DONE, while Wilma has to stand up in the aisle but hopefully can make it through a good chunk of the movie.
Just before Passover, Fred was running to the bathroom and he bumped his head. He was absolutely fine, but after the incident he told his intervention specialist that he could not do his work. The reason: “I am badly injured and I need to call Elk and Elk.”
Something new I want to start doing on this blog is making note of specific concepts/ stories/ gleanings I’m getting from books I’m reading. You’ll notice that books I read are about Judaism, autism, or business. First up is a Jewish book: Self Improvement? – I’m Jewish! by Rabbi Abraham J. Twerski, M.D. (LOVE this Rabbi—- a psychiatrist AND a Rabbi. An Orthodox Jewish professional who approves of secular education, and mental illness not being hidden due to potential shidduch concerns).
On prayer: “There is a story about a person who, beginning weeks before Passover, laboriously cleaned his house for the festival, and cleansed his kitchen from chometz to the point of surgical sterility. On the last day of Passover he discovered that in the well from which he had drawn his water during all of Passover there was a loaf of bread floating on the surface. Broken hearted, he asked his rabbi why he had fallen victim to this transgression, especially since he had exerted so much effort and energy to avoid chometz. The rabbi explained, ‘the prevalence of chometz all year round makes it physically impossible to eliminate it totally be unaided human effort. You tried very hard indeed, but you forgot to pray to G-d to make your efforts successful. Had you prayed for Divine assistance, then all the work you had done would have been blessed. By failing to pray, you indicated that you thought you could do it yourself, and so you were shown that you were wrong.”
On teshuvah: “Rambam states that proper teshuvah is achieved when G-d will testify that this person will never again repeat the sinful act. This statement elicited a question from many commentaries, that inasmuch as the Divine foreknowledge does not determine a person’s behavior, and a person always has complete freedom to choose to do either right or wrong, how can G-d testify that someone will never again do a particular sin? This appears to contradict the principle of total free will. I was provided with the answer to this by a man who delivered a talk on the twenty-fifth anniversary of his sobriety. He said ‘the man I once was drank, and the man I once was will drink again. I am sober today because I am not the same person who drank. If I ever go back to being that person, I will drink again.’”
On community: “The Torah states that Israel will be so strong that five of you will pursue one hundred of your enemies, and one hundred of you will pursue then thousand. Rashi notes that these figures are not mathematically correct, because if five pursue one hundred, the ration is then that one hundred will pursue two thousand, rather than ten thousand. Rashi answers that there is strength in numbers, and that the relationship is exponential rather than linear. Five may subdue one hundred, but one hundred people working together can triumph over ten thousand. Individuals involved in altering a self-destructive lifestyle should therefore seek each other out and work together toward their common goal.”
After dinner having gotten a LOT better with virtually NO silverware throwing or plate throwing lately, Wilma started in at dinner tonight and food went flying (this soon before Passover of COURSE!) so I remarked to my husband that it’s a “long journey” (working on her behaviors). She stopped throwing and with the cutest expression said “oooh I LOVE field trips!”
Wilmaism: we had a few visitors tonight and after the last visitor (customer) left, we decided to skip bath tonight and do bath tomorrow night— but her hair is pretty oily so I told her I’ll probably put it up tomorrow. So she said “will you put Fred’s hair up too?”
when my customer was here— a chassuveh Rebbetzin (an important Rabbi’s wife)—— Fred was drawing with sidewalk chalk on the sidewalk as we were outside chatting. Guess what he was writing, and yes she saw it. When nobody is around, he writes math problems. When PEOPLE come over, he writes…… BUTT. And TUSHY. Very large. On our porch. In front of Rebbetzins.
Now that Wilma’s medications are under control and her behaviors are starting to improve, and many times we can go places and trust that she won’t throw shoes at strangers’ heads, we can finally begin intensive behavioral therapy. After years of insurance won’t cover it and the school district doesn’t provide it, we sat on waiver wait lists. After getting approved for SELF waiver we waited some more. Our enroll date is Jan 29th. FINALLLLLY this coming Tuesday, April 8, we will begin services— part of the FBA that will lead to ABA. Do a dance of joy with me. Will ABA be the magic bullet? Maybe not. But to be able to access it and try it before shrugging it off as “well, she’s high functioning, so it’s probably not for her” is a blessing. Now to get Fred off the wait list. When I called and asked why she was approved first I was told it was because he “ONLY” has autism. ONLY. HAH. She’s got autism, adhd, ODD, megacolon, encopresis….. and a partridge in a pear treeeeee. At the moment, his behaviors are more severe than hers. But SHE’LL get the intensive therapy.
ABA is what I THOUGHT would be part of Fred’s autism classroom in preschool. Though I LOVED that class for him, it wasn’t ABA. Some kids get ABA tutors in public schools— but I’ve been too happy with the district to fight them. For what they DO provide, they do an awesome job and really love and know our kids. ETR/IEP meetings are a breeze. But I’ve been wanting to try ABA and had no way to do so. Until now.
There are certain images that engrave themselves on my mind from time to time. Much of the time these images relate to children, teens, or adults with LFA. My children, because they are verbal and toilet trained/training, and cognitively fine, are considered HFA. Yet I sometimes feel very alone in the HFA world as my kids (both of them) have the aggression typically associated with the LFA world. My nose has not YET been broken. I HATE saying YET but it’s the truth. My kids are getting bigger, stronger, and more stubborn. With every glimmer of improvement I see, I also see the possibility of me or their father or one of his teachers (he is aggressive at school as well as home) needing medical attention or God forbid, hospitalization.
HFA support groups don’t focus on aggression, which is our biggest stumbling block. I don’t care if my son has any friends if he can’t stop biting. Let’s get the biting under control first. I don’t care if my daughter speaks nonsense if she throws her shoes at strangers, know what I mean? LFA parents don’t feel welcoming, at times, to me, when they’re confused by my kids’ academic and verbal achievements and write us off as “autism lite”.
One of the images on my mind is this….there is a woman on a facebook group to which I belong who was changing the diaper of her teen boy when he kicked her in the belly hard enough to kill her unborn baby (she was 8 months pregnant).
There are many parents who are afraid for their lives because the meltdowns of their children with autism can be very VERY violent. There are teens and young adults who have killed their parents. There are parents who sleep in shifts.
I thank God every day that the aggression we see in our children is less intense and less severe than the aggression typically seen in those LFA children, teens, and adults whose mothers I’ve befriended. However, even though our aggression is no longer multiple episodes per day and indeed there are full days with NO aggression, I still get extremely frustrated by the comments from ignorant onlookers. “Are they retarded or something?” “Spoiled brats!” “Why don’t you give them a smack?”
It’s been a while….
Wilma is on 6 mg of abilify and 30 mg of adderall and doing AMAZINGLY both at home and at school. At school, there are virtually NO more episodes of flopping to the ground and screaming her head off. At home, there are entire days with NO episodes of ODD. The adhd has disappeared into adderall oblivion and homework is a breeze. Her major episodes are all ODD related and down to a few times a week rather than a few times a day. She does pick her fingers until they bleed on purpose and get blood all over herself on purpose (she even puts it on the doorposts right before Passover— irony!), but that’s SMALL potatoes compared to the days of rolling her in a stroller screaming out of the library, being kicked out of Chuckee Cheese, etc. I’m still terrified to take them most places by myself but that’s from remembering history more than today’s reality… I think. But I don’t want to put a mahooey on it. AND—- a majority of her poops land in the toilet due to great laxative timing, and a teeny bit of command of her nerve endings! She poops in her underwear but just a little bit— tells me immediately and then I can put her on the toilet and she does the rest– huge improvement! A couple of times I’ve even caught her fidgeting and told her to try to poop— CLEAN underpants and an ENTIRE bowel movement in the toilet!
I credit our county board rep for a lot of the improvement— she’s helping me chart behaviors and target particular times of day and particular triggers. Of the Center for Autism’s outreach program, the psychologist, the developmental pediatrician, and the county board rep, she’s probably the most helpful— it’s taken a long time to gather this dream team.
This month’s improvements: Chuckee Cheese got rid of some games and brought in some new ones. She didn’t flop on the ground, scream her head off, and throw her shoes at strangers. She simply…. made friends with a new game. Amazing. We had stopped buying soda for a while. We had some this week—- she wanted some after dinner tonight. I asked her to wait until she was finished with her chicken. NO plates went flying. No forks went flying. Seriously, it looked like a typical dinner with typical children. There are entire days with no behaviors worth writing down. There have been days with 83 to 120 minutes worth of severe behaviors. But lately—- 20 minutes over the course of a day is typical for us (on a weekday when they’re mostly at school anyway, but STILL!)
Fred is on 10 mg of abilify and OFF the zoloft and doing better at home. He’s doing better at home simply because WILMA is doing better at home. At home, I don’t give him a lot of expectations. He’s had a long day at school. As long as he does his homework and goes to his after school activities, I pretty much let him have at least a half hour of ipad or computer time a day and that keeps him fairly calm until Wilma starts up. At school, however, things have gotten significantly worse. It all started during the zoloft trial period, but it’s continued and through putting together the FBA and changing up his behavior plan at school and bringing in the county board rep to observe him at school, I’m starting to wonder whether to ask for a placement change (self contained class), a one on one aide, or a different (read– expensive autism based) placement. I LOVE this district and don’t want to come in with a lawyer and beg for what costs money….. they’re trying so hard and they love him so much. But he’s biting, kicking, and hitting. He’s spending a chunk of each day screaming. The county board rep arrives to observe him and hears his screams from outside the building. It’s heartbreaking. He’s calming down at home, but so overwhelmed at school. Academically he’s fine. Socially and emotionally, he’s having such a much rougher year than last year.
Today, he fell at school first thing in the morning and bled all over his pants. They called me to come take a peek and two teachers and I all agreed that maybe he might need one stitch. So I took him to the hospital. Two episodes of Sesame Street, a green popsicle, and 3 hours later, he’s got 4 stitches. Took him back to school for the last hour of the day, came home and finally ate my breakfast at 3:00 pm after filling his pain med and antibiotic ointment scrips. Fun times.
PS— Wilma’s medicaid waiver was approved on January 29th. It’s now April 1st and we still haven’t been approved to begin services (we want ABA!). Meanwhile her behaviors have improved somewhat—- maybe if they make us wait long enough, she’ll behave appropriately 100% of the time. hah.