Archive for the ‘Autism spectrum’ Category
All in one post because I’ve been ignoring this blog (what else is new?) while I get busy with life.
First, her encopresis/ megacolon. We’re stuck. We are down to one normal sized bowel movement a day (thank GOD!)…. AND STILL the random soilings as well. When she soils we make her sit on the toilet, get the rest out, and be calm while we wipe her and change her. Every night after dinner she needs to produce on the toilet. If she doesn’t, she gets an enema. That was all fine and dandy until recently she decided she no longer wanted enemas so the threat of an enema produced a meltdown. A 30 second procedure shouldn’t involve an 8 year old screaming for twenty minutes. Wishing there were better options. But when you’re left with very few options after trials of other stuff, (Miralax brought her back to the 10 to 17 soilings a day, new poop around impaction— she got re-impacted on Miralax) and the kiddo becomes less and less compliant, and older and stronger…… ugh. Sadly, it used to be a breeze to get this done. She is not at all impacted. She is on probiotics and metamucil every day. I have NO IDEA when her nerve endings will decide to tell her brain that a poop is coming and SHE will initiate a bowel movement in the toilet without being scheduled or enema—ed. But when that day happens, it’s party time.
Second, my husband was in the hospital for six days recently. 2 kids, 3 pets, laundry, dishes, trash, bill paying, kid appointments, etc depended on me alone that week. I had strep throat TWICE that month. Mommy doesn’t have time to get sick but get sick she did anyway. He was in for a horrendous abdominal abcess— we have no idea what caused it but he needed six days of IV antibiotics and a couple weeks of oral. He’s fine now— some residual pain if someone bumps into him in that area of the body– should take a few more weeks and he’ll be perfect. waited a long time with 2 autistic 7 year olds for my appt at minute clinic. I got diagnosed with strep again. got my antibiotics, got in my car to go home, and…. minor car accident, my fault. I tapped a car while pulling out. So then there were two autistic 7 year olds screaming in the back seat because we weren’t going anywhere— the other car was a woman a bit older than me and an elderly man. The woman was trying to calm the man down by taking a photo of my insurance card and license but she didn’t feel there was any need to call the police— it was a tiny scratch on their car. The elderly man told me I shouldn’t have a license. Then out of nowhere he fakes a fall. He wasn’t even in the car when I hit it. He was standing next to it. All of a sudden he falls down. I burst into tears because I have a husband in the hospital, strep throat which hurts like heck, and two screaming kids. So the woman says they won’t call the police. Right then in the four minutes I was crying, of COURSE I saw someone I know. Long story short, they did NOT file a claim but MAN what a day!
Next, I got my TMJ splint. After six facial surgeries, upper jaw expander, braces, and retainer, I now have TMJ. I need six months of splinting and then braces again. So far, I’m taking it out every time I try to talk on the phone. You’d think I’d be used to orthodontic craziness but it’s been decades. Good luck understanding me when you see me. I sound like Cindy Brady.
My kids had winter break for 2 weeks. They have drawn armadillos playing the violin. They have watched youtube videos of “Fergie” as Stacy Ferguson from Kids Incorporated in 1984 (I totally remember “Fergie” as a child and they didn’t believe me). They have picked each other’s noses (I never said my children were normal). They have visited two different hospitals, watched me get tested for strep, gotten themselves tested for strep, been out to lunch and for ice cream, been to ToysRUs, been to the post office and the grocery store, and begged incessantly for ipad time. We did (try to) watch one movie—– my blood pressure is still high from that event (MOMMMMMMY CHANGE THE CHANNEL!). School came back again and sanity was restored. But when you transition autistic kids back from winter break, a snow day is sure to hit. then a four day weekend (Friday was teacher in service day and Monday was MLK). Next up? Spring break. Kids are both having a REALLY rough time getting back into the swing of things…. psychiatrist thinks it’s still from transitioning back from winter break and doesn’t want to make med changes yet. CURRENTLY he’s on risperdal which had been working well till now, and she’s on adderall and geodon. Switched to geodon from abilify which was making her gain weight. Not sure if i’m hating the geodon, or hating that we just had winter break.
And finally, Fred might be a panda. 🙂 In a neurotypical child, if mom gets strep throat twice and has both kids tested to see who the carrier is and one kid is a non symptomatic carrier of strep and gets two antibiotics, gets tested again, and no longer has strep, you’d be done. In MY child, since I don’t know whether his behavior increases lately are from winter break or from strep causing PANDAS (I’m too lazy to explain it– please use google) since he acts a LOT like a PANDAS kid, he’s now about to do a month of a third antibiotic— PANDAS protocol with our pediatrician’s office. If it helps his behaviors, we look into a PANDAS diagnosis (would that help him move up the medicaid waiver wait list so he can get ABA sooner? hmmmm). If it doesn’t, then hey— at least we know he’s no longer gonna give me strep again (which hurts like a bitch in a grownup, by the way!).
I’m working more recently. Aside from Mary Kay and Send Out Cards I also have a small social media business. Just one of my social media clients wants me for at least six hours each week. Financially, yay. Housework wise? bleah.
Oh and Fred, dear sweet Fred. BIG meeting tomorrow with the IEP team and the head of gifted for the whole district. They are now giving as much attention to his IQ and his gifted identification as they are to his autism and at this point, they need to differentiate his instruction more than is comfy. I’m not sure they’ve ever seen such a low functioning kid (psychiatrically, behaviorally, socially) who is so academically advanced. I just don’t need to be told that it’s the highest IQ they’ve seen in many many years when the boy still poops himself from time to time, ya know? On the table is skipping a grade (I’ve said no before, but they’re starting to convince me, if they keep him superglued to an intervention specialist who gets him), a gifted program at a different school, or a really individualized program. I’ll know more tomorrow and I will try not to wait two months to blog again so you all can catch up. As for Wilma, she’s not gifted, doing fine academically, and will stay at her current school in the correct grade.
Now— kids are back in school. No more hospital for Abba. No more strep for me. Can my life please get boring again?
Oh yeah, they turned eight. Woot!
THIS is what we should be talking about. Not lighting it up blue, not talking about how neurological differences are au-some…. THIS is what we should be talking about. I thank my lucky stars each day that no noses have been broken yet in our home— nobody has been hospitalized yet. My twins, indeed, are the HIGHEST functioning children of parents in this facebook group to which my friend refers in her post. But I fear for the future……. if things worsen and my kids get bigger and stronger than me. I know for certain that my son would have been put in residential treatment years ago if not for the therapies and medications we’ve tried thus far. My goal in life is to keep my kids home with me, regardless of well meaning friends’ comments “you can’t live like that! Send them to live in a treatment facility!”
THIS is an au-some post. Yes, the term au-some is fine. Just don’t tell me that autism is au-some because it’s NOT.
and for the rest of us where you can tell the child is on the spectrum, give the mom a good long judgemental stare…. *KIDDING*! People either LOVE this one or hate this one– see why?
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.
I just posted this in a facebook group for Orthodox Jewish moms of “special” children. I’d love the opinions of the fellow Jews reading this….. how would you handle shul if you were me?
opinions please! My twins turn 7 tomorrow (!) and are very high functioning except for severe behaviors— fully verbal and cognitively fine— both have autism. One twin will start receiving the Ohio SELF waiver in February— we’ll be using much of it for therapy insurance won’t cover and some to pay for a DECENT summer day camp (the only special needs camp we’ve been able to afford has gotten much suckier— a JEWISH special needs camp would be ideal, but this is Ohio….). But we’ll have more money we can use to have a certified person accompany me and the kids in the community— most places I cannot take both twins by myself because of severe and dangerous behaviors. We haven’t been attending shul at all. My twins’ only exposure to shul has been on Simchas Torah when Abba goes to a hashkama minyan, comes back to get us, and we go do the dancing. We’re safe at shul with one adult for each twin. So being that my kids are very cognitively aware and are learning davening and do have many many moments each day which are 100% FINE, but being that if I were to take them both to shul by myself, as soon as one twin breaks down I’d need to take them both home and that’s physically impossible to do due to the unpredictability of severe behaviors (when I walk with them both during a double meltdown, strangers get bitten or get shoes thrown at them)—— I’d like to take someone to shul with me. I don’t want my husband to need to leave shul or be disturbed at all. As soon as I hear my son melt down on the men’s side I need my husband to be able to walk him outside and have me or my helper meet him and take him home. If my daughter melts down I need to have my helper or myself take her home. If I can do this, we can finally enjoy shul as a family, I believe. We’d do 20 minutes, then 40….. I wouldn’t force 3 hours on 7 year olds— but severe behaviors could happen 10 minutes in with one twin or both and I physically can’t take them both there or home. So here’s my question——- do I hire a Jew or a non Jew? A non Jew isn’t allowed into an Orthodox shul. A Jew would need to drive on Shabbos to get to us. An Orthodox Jew wouldn’t be certified to be able to be paid by this waiver to help us— we have to choose from a list of people…… do I ask the Rav for a heter to bring a non Jewish worker into shul? Do I ask for a heter to hire a Jew even though that means the Jew would drive? It’s a strange conundrum. For the rest of the week I can hire whomever but how do I handle Shabbos and Yom Tov knowing that’s when I need help the very most? (the last time I took them both for a walk by myself we were all stuck crying for half an hour until someone went into shul to get my husband who did not enjoy having his davening interrupted to help get them safely home). **OR** do I hire a non Jew to stay with one twin at home while I take the other twin to shul and just switch twins each week? And if I go that route, what are the rules of hiring a non Jew to work on Shabbos and Yom Tov? I know other people in this group have non Jewish helpers on Shabbos but I haven’t seen anyone yet have this shul conundrum……. thoughts?
It’s time for the first grade update.
Home is still hard. REALLY REALLY hard. She ticks him off on purpose by flopping on the ground and refusing to do what I ask (including using the toilet—- yeah I’m such a mean mom asking her to go potty). He screams and goes into multi-bite mode. I send him to the playroom to calm down. He screams from there. She still refuses to comply. And on and on. It used to be about toileting AND dinner AND getting on the phone with the grandparents AND homework but now homework is off the list. For whatever reason, homework is going well for Wilma this year. There is a LOT more homework in first grade (at least a half hour every day) but Wilma is calmy complying with homework time. Woo friggin HOO! Fred is having a REALLY rough time with the repetition of homework and the forced writing (he hates being told to write), and anxiety attacks over coming up with a sentence about a book he read, etc. But at least for Wilma, homework is okay.
Fitting homework in is hard. Lots of after school therapy and appointments, dinner, and I can’t seem to get a handle on helping them both at the same time so I usually help Wilma first and THEN help Fred while Wilma plays on the computer or ipad. On a non appointment/therapy day, this works but on other days I HAVE to help them together and it’s hard.
But school? School is going BEAUTIFULLY this year. We have Wilma’s increased adderall dosage to thank for her success. She is now on 5mg abilify and 30 mg adderall. We have finally found the adderall sweet spot for her and her adhd is under control. WHEW. Her oppositional defiance disorder and autism are definitely NOT under control. And don’t even ask about the encopresis. But the adhd? SO much better. And Fred? Well aside from biting the teacher and doing a lot of screaming and crying, he’s academically doing just fine. Socially? eh. Anxiety wise? eh. But he loves school and they’re working well with him and the other kids are accepting of him. Aside from a lack of ABA, I LOVE both of their schools. I really do. Oh, and aside from a lack of Judaism. At this point I’m getting less hopeful that they’ll someday be in Jewish day schools and more accepting that perhaps our place is in public school.
Monday, the friendship circle girls come after school— that will start this week. Wednesday, they’ll go to an activity club run by the Bikkur Cholim house— that will also start this week. Thursday is speech therapy. So our only non appointment/therapy day will be Tuesdays, but I met with a new therapist today who might be able to work with them on Tuesdays so we’ll see. Meanwhile whenever the SELF waiver comes through and we have ABA funding our entire schedule will have to change in a big way.
First grade is fun. Writing sentences, learning addition and subtraction (well for Wilma anyway. Fred is doing fractions, decimals, and percentages with his teacher— thankfully they’re willing to do that for him because his high anxiety moments include being asked to do math at the level where he’s supposed to be– keep his mind moving, and you keep his anxiety at bay– they’ve learned that.)
Wilma is on abilify and adderall. Fred is cutting down on the abilify and going up on the zoloft (did I mention we took him off focalin and put him on zoloft?)—– doc wants to get him off abilify all together with a huge dose of zoloft— good luck, doc. we’ll see.
Toilet training/ megacolon/ encopresis update to come over the weekend or next week—- I’m just…. BUSY!
In the past few weeks here’s what you’ve missed because I’ve been lazy about blogging:
Wilma had an autistic meltdown on the floor of Chuck E. Cheese, screaming her head off and throwing her shoes at people….. she got kicked out. “you need to get her out of here— she’s disturbing other patrons”. thanks. And no, her brother was NOT reacting calmly—- I response blocked 18 bites– go me. Hoping hubby doesn’t need the hospital for his leg she kicked—- if he needs a blood blister drained, we don’t have health insurance.
the kids’ new health insurance needed a pre-authorization for Fred’s $800 a month med from which he can’t be dumped—- if we were to take him off, he’d seriously need to be weaned. Last week they gave us enough pills for free to make it through Tues. Monday I met face to face with the doc who said she took care of the pre-authorization. Pharmacy still couldn’t put it through and gave us ONE more pill. Called the doc again and it got straightened out but I was thinking….. If Fred has to stop taking the medication that is essentially keeping him out of in-patient… cold turkey…. I’ll be inviting the doctor, a rep from the health insurance, and a rep from the pharmacy to come babysit him while he goes cold turkey off the med while I go vacation in Aruba. If he does go in-patient, that might bump us up on the waiting list for funding for real behavior therapy- hmmm. Can I scream yet?
got the car fixed to the tune of $765.80. knock sensor, oxygen sensor, throttle position sensor….. For a 1999 car, I guess it’s not too shabby. still only 46,000 miles on it. $80 of it was from rodents chewing the wires—- yet again. Rodents love going underneath our cars. The good news is that the other car (brand spankin new) will need nothing for quite some time because there are only 800 miles on that car. The other good news is that we paid $300 and the other $465.80 in 2 weeks so I have a couple of weeks leeway not to have to bust out all that dough at once.
my one bit of alone time between august 2nd and august 29th— a trip by myself with no kids—- to the lawyer downtown. He convinced me not to sue anyone. hooray. the kids’ insurance company switched to one that has a weird clause in it that a few cases have won in terms of parents being able to get ABA for their kids in severe situations. So I was meeting with a lawyer who convinced me that waiver would be an easier route to travel because winning those cases is not a clearly defined route and has lots of complications. There are a few different waivers. One has a 10 year waiting list…. but another newer waiver, “SELF”, MIGHT be quicker. So he gave me the number of a person to call who might know how quick. Meanwhile we’re already on the SELF list. If SELF rejects us or takes ten years, then we might be able to sue the insurance company. Woo friggin hoo. He was surprised we weren’t suing the district but he agreed that we wouldn’t be able to get it through them anyway, and he said I’m one of the few parents he’s met with who is basically HAPPY with the public school district (aside from the lack of behavioral therapy!). He said we can get the SELF waiver more quickly if there’s an emergency.
Anyhoo, center for autism demands we do ABA. District says we don’t need it. Center for Autism sends us to a lawyer. Lawyer has us call the board of developmental disabilities. Board of DD is probably going to want me to sue the district. Excuse me, I’m covered in red tape.
We got a hamster. Wilma adores him, Fred couldn’t care less.
My Wii broke and is unsalvageable so I might just have to join a gym— otherwise my only workout option is a realllly old and squeaky elliptical machine in the basement.
I spent 20 hours in the past 2 weeks fixing my ipad.
ok, you’re all caught up. School starts August 29th. Till then, I’m in survival mode…… camp is long over.