Want to start off the morning with some fun? Take a 6 year old with autism and SEVERE SPD to get his blood drawn and then to an ENT appointment. At the ENT appointment, I learned this—- he has no tongue or palate dysfunction but only with certain consonants is he hypernasal with nasopharyngeal incompetence and the ENT has never seen that before and thinks it’s a speech behavior and not something that can be fixed medically. Lovely. With everything else wrong with him I was hoping for an easy fix for the “we can no longer understand him because his speech is worse and worse” problem. The ENT was awesome enough to video Fred talking and message it out to his colleagues, but you never want to be the parent who is constantly causing doctors to email their colleagues going “geez, have you ever seen THIS?!” My decision as to whether to do nasopharyngeal endoscopy on my 6 year old anytime soon based on how much else is going on is…. HELL NO. He’s already been cauterized under anesthesia last summer (which worked wonderfully for the constant nosebleeds). Note to anyone who was at that particular clinic this morning— we apologize for the massive amount of screaming. 🙂
Archive for the ‘Speech and language pathology’ Category
In Judaism we have a special song we sing at Passover time— if God had given us just this it would have been have been enough. If he had given us this but not that it would have been enough. Sometimes when I vent I turn it around.
I’m a bit discouraged this week and just need to throw up my hands and say Dayenu.
If I had twins, Dayenu.
If I had special needs twins, Dayenu.
If I had to work because we can’t survive on hubby’s income alone, Dayenu.
If I had to work evenings because daytime is chewed up by paperwork and meetings, Dayenu.
If I had to do laundry, clean, cook, pay bills, Dayenu.
If I had to go to IEP meetings, ETR meetings, FBA meetings, Dayenu.
If I had to balance the schedules of the outreach worker from the autism center, the outreach worker from the behavior center, the outreach worker from the board of developmental disabilities, Dayenu.
If I had to balance the schedules of the neurologists, psychiatrist, behavior therapist, speech therapist, developmental pediatrician, Dayenu. (we’re not currently doing OT or PT outside of school hours— they’re six years old and don’t get home till after 4:00 for pete’s sake—- there are only four days a week we can cram after school therapies!)
If I applied for SSI and got denied, Dayenu. If I re-applied with a lawyer and am killing lots of trees in prep for a second denial and subsequent appeal and court date, Dayenu.
If I HATE the behavior center and am required by three different psychiatrists to take my kids there so I fill out an hour’s worth of paperwork for a new developmental pediatrician so that we can quit the behavior center therapist, outreach worker, and psychiatrist and the new developmental ped can handle our med management, Dayenu.
If I had a daughter who poops herself five or six times most days after school on purpose and NEVER uses a toilet at age six, Dayenu.
If said daughter has a GI doc who claims she’s constipated and is giving her miralax and metamucil protocol each day, Dayenu.
If I have to play the medication roulette game between clonidine, tenex, abilify, focalin, vyvanse for two different children with three different psychiatrists and a developmental pediatrician, Dayenu.
If I have to survive double autism meltdowns in public complete with biting, screaming, flopping and refusing to move, stares from strangers, and unsolicited parenting advice, Dayenu.
If I have to have the school district tell me that they don’t need ABA (and insurance won’t pay for it either), Dayenu.
If I have to have the school district tell me that they’re too high functioning to be sent by the district to an autism school and they can handle them at a regular public school, Dayenu.
If I’d rather send them to a Jewish day school but know that I can’t possibly give up the services we’re getting at public school and have to figure out how to get Judaism into them outside of school hours, Dayenu.
If I, in an effort to save money, want to bring a VERY high rent payment down to a reasonable mortgage payment and am thinking about purchasing our first home at age 39, Dayenu.
If to purchase said home, we need down payment assistance and to qualify to receive the downpayment assistance I have to take a course which requires me to cancel the twins’ after school appointments for an entire week and find an after school babysitter, Dayenu.
If I have to prepare for Purim, Dayenu.
If I have to prepare for Passover, Dayenu.
But put all of them together and you have one very tired work at home mommy.
We did IEPs on Monday! I was in and out in two hours for both kids (since I had already had a three hour PRE IEP meeting). Five goals with subgoals for Wilma, Three goals with subgoals for Fred, enough OT, PT, and speech to satisfy me but not so much that switching them to the therapy center is out of the question (I just love their school so darn much though…..). I’m satisfied.
Potty training goals for both twins.
Kindergarten placement? To be decided at the end of February when ETR results are back. ETR testing started this week. PLEASEEEEEEE let there be the right program for both of them at ONE school with similar hours this next year. PLEASE.
But here’s a funny poem because this nice Jewish family loves Xmas poems. — about the IEP process—- for most fellow autism moms, it will garner some chuckles!
I have three other blogs– everyone knows the blogs are mine, there’s nothing private about them, and the purpose of those blogs is strictly business. Everytime I make a post on one of my blogs I think that I REALLY should be blogging about my personal life— the life that revolves around Orthodox Judaism and special needs twins. There’s a lot that is really unique to our situation that I think can inspire and help other families. At the same time, blogging will help me cope. I’ve been more and more overwhelmed over the past year or so, and joining the ASD blogging community and being a part of a network of families struggling with similar issues will surely be helpful. I’m on a couple of facebook autism groups and they’re very helpful. But I haven’t shared my entire story. So bit by bit, as time permits, I’ll share it here.
The name of the blog represents the first moment I knew that either of my children has an ASD. My son, “Fred”, who is now 4 and a half, was sorting his megablocks by color at thirteen months. Yellow ones here, Red ones there, Blue ones there. When I would move one to try to show him how to stack them, he’d cry. He had always been a lot more intense than his twin sister and had a lot of funny quirks. A little over half a year later, he ended up with his provisional diagnosis. We didn’t do his official diagnosis until this year because hey— if it walks like a duck and quacks like a duck, treat it like a duck. He was already in special education, occupational therapy and speech therapy. Since we weren’t yet ready for anything requiring special funding (our state has special funding for autism schools, OR for one on one aides to help mainstream at typical schools– but in order to access the funds you need to be outside of public school. So far, my twins have been in public school)– he didn’t NEED a diagnosis. For various reasons (for a future post!)– he needs one now.
“Wilma” was the reason the county’s program for special needs 0-3 year olds kept giving us home visits during the twins’ first year. She was hypotonic and delayed in all of her milestones. She didn’t even cry for a long while— she had an insistent little squeak. If her twin brother hadn’t been insanely loud, we may have slept through some of those middle of the night feedings. She was an incredibly easy baby. And then the twins turned one, and all of our attention began to turn to her brother. We thought we had a handle on her special needs: hypotonia and a speech delay. We still had no inkling that she could be on the spectrum. Age two, age three, same thing. We figured we had a son with autism and a daughter with hypotonia and a speech delay. Until age three, we didn’t feel she showed any of the signs of autism. Age three, she also landed in public school on an IEP due to her being behind in so many areas with the gross motor, the fine motor, the speech….. but she was still our social butterfly, having learned to clap and wave and talk to peers long before her twin— autism didn’t even cross my mind. She was in special education, physical therapy, speech therapy, and occupational therapy, but I still had the optimistic hope that once she catches up with some of her essential skills, she’ll end up fairly neurotypical.
A year and a half later, and I can look back at her journey from age three to age four and a half and see her spectrum behaviors getting more and more intense. It took me many months to recognize her behaviors as being spectrum related. For many months I was saying “well, she’s got hypotonia, a speech delay, and SOMETHING else— probably adhd”. So we got her diagnosed with adhd— through the process of THAT diagnosis, I discovered that she is also on the spectrum. More on that journey in future posts.
I’m looking forward to the journey of sharing our story through my words. Please keep our identity private. My facebook friends will know that this is my blog, but the general blogging community or anyone finding this blog on the internet will know my children as “Fred” and “Wilma”. Stay tuned for more!