Work Trip

I went away! On a business trip! For two whole nights! I went to Florida, where the weather was beautiful and I was even able to get a quick swim in one evening at the hotel pool.

I drank too much. I gave a horrible presentation in front of a large group. And I did not sleep nearly as well as I would have liked.

And while I was gone, M got the flu, Bubbles (our pet betta fish) was nearly killed when M dumped the whole container of food into his tank, and I had to mop Chris off the floor when I got back. But it was incredible to leave for a couple of days and take time to get dressed and made up in the morning, take a normal shower, and otherwise not feel quite so crazy. And if absence makes the heart grow fonder generally speaking, I think that’s 1000x more true in our case—my husband was thrilled to have me back home. And I really, really missed my little bugs.

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Potty training

We have been pretty lucky with potty training, compared to other families with kids as severe as M is. By 3-1/2, M knew that he was supposed to go on the potty. And now, as we’re rounding the corner to 4 years old, we’re working on “sounding the alarm” and “wiping.” Both are difficult for an autistic child. For one, since M is pretty much nonverbal (aside from his extensive dinosaur vocabulary and the occasional requesting), he will hold himself and not ask for the bathroom until it is a dire emergency, or he actually has an accident. And while we have successfully avoided pee fountains due to our awesome ability to time train and read his physical cues, we learned the hard way that it’s not fool proof. When his aide at school (who knows how to read his nonverbal potty cues) was out sick, he had a sub. And we got a call that day to pick him up from school with diarrhea. But that was actually just because the sub didn’t know his bathroom behaviors. It is hard to tell when he has to go, when he’s done, when he needs to sit for a while to get it all out. So he pooped his pants and I had to pick him up from school (I’m so glad his aide is very reliable and this has only happened once).

But, despite this setback, we’re ready to move on. Because onward and upward, right? So now that he knows the potty is the place to go, we need for him to let us know when it’s time. Because people aren’t going to lead him there every two hours for the rest of his life. He needs a signal. And he needs to go in there, do his business, and come out on his own.

And maybe this is an unrealistic expectation, but I’m *on this* task. I’m determined to make it happen.

Here’s where we are now: I notice him toying with his pants or realize it has been some time since a bathroom break. I tell him “It’s time for the bathroom.” And if he has to go, he generally follows me. In the bathroom, he proceeds to strip from the waist down (a huge improvement from when he would also insist on taking his shirt off to be completely naked). He takes off his pants, underwear and socks. (I am working on convincing him to keep his socks on by saying that it is cold, figuring that we can work our way towards less nudity while toileting over time).

He sits on the potty to do his business (it is impossible to tell whether he needs #1 or #2 until he is actually doing it, and he has not taken to standing to pee, so sitting is best for him at this point). And he mostly does his business without incident.

So now, we are trying to introduce wiping. Except. It always goes horribly wrong when you least expect it. He wipes, throws the paper in the toilet, and then tries to immediately fish it back out again. (We’ve been working on not putting hands in the water, but it’s a slow process). And today, after a poop, I gave him the toilet paper to wipe and was anticipating it going into the potty and having to hold his hands to keep them from fishing it back out again. But I was not anticipating what actually happened.

Faster than I could possibly react, he took the carefully-folded toilet paper wad, wiped his butt, and then immediately brought the paper up to his face and wiped his mouth. “Ahhhhhhhhhhhhhh! Nonononononononono—NOOOO!” Ugh. Worst case scanerio. GROSSEST case scanario. I’m not ready for this!!!

Maybe we are moving too quickly and I should just be happy we’ve had some potty success. I definitely should not have tried to move on to this step yet.

Or maybe, maybe, this is part of the learning process and I should plough forward. I’m going to try again, despite this horrific trauma. Because I think I read somewhere that since the bacteria in your own poop is in your body already, it’s not that dangerous?

Psycho therapist

I am starting to suspect that I have a psycho therapist.

Ok, I’m probably overreacting. But I’m beginning to get the feeling that the lady gets off on making me cry. Now, admittedly, making me cry is not a difficult task. Especially when the #1 topic of conversation is M, his developmental delays, and my feelings about that.

But I decided to test this theory in our last meeting. I went to her office and was as positive and upbeat as possible. I cracked jokes. I tried to remain calm and poised.

And she just kept staring at me in this quizzical way. And she had a box of tissues perfectly positioned on her desk near me. And I felt like she wasn’t totally happy with my positivity, and kept bringing it back around to “how are you feeling?” And looking at me expectantly.

Like I said, maybe I’m overreacting. Maybe since I have been emotional in so many previous meetings we now have this vicious circle going on with her expectation and my behavior. Maybe it’s her job, and working through negative emotions is the part of her job she really likes most. Who knows?

But I don’t want to cry anymore. I need to get to a better place. And it feels counter productive to meet with someone once a month who is just going to make me drudge up this negative pile of emotions without really doing anything to help.

I think I need a new mantra for this.

Stay focused. Stay positive. Steer the course. Avoid psychos.

And then there was bread…

As I’ve posted before, I’m feeling at a standstill with M’s autism and have been struggling to find the right way forward. Here’s where we are with everything right now:

  • M’s teacher has noticed/documented his developmental regressions (specifically that he has stopped using what little spontaneous language he used to have and has reverted to noises and pointing). I requested a team meeting to get the teacher, aides, social worker, speech therapist and occupational therapist on the same page about what to do going forward. In my last meeting at the school (2 weeks ago), the social worker did a complete 180 and suggested medication (which I’m not sure I’m up for at age 4, especially given that she previously told me that she worked with teenagers and young adults who had to be hospitalized in order to wean them off of all of the meds their parents had them on just to get through school…) And (unexpectedly) the speech therapist said that he was spontaneously requesting some things with her, and I was just so happy to hear it that I cried and left (d’oh!)
  • I sat through the OPWDD workshop and thought I had it all down but now have been referred to a different agency and have to start the process all over (d’oh, again!)
  • We completed the 24 hour EEG that our neurologist recommended last year and made a follow up appointment for February 5th to review results and triple confirm that there is not something medical (seizures, metabolic issues) impacting M and causing these regressions. More to come on this after the 5th.
  • We have our IEP (Individualized Education Plan) meeting coming up on February 13th with Matthew’s school and our home district (which happens to also be M’s 4th birthday) to review his progress and get recommendations for his upcoming year of school (as well as to determine if he will qualify for summer school, which I imagine he will and which I really need him to qualify for since he can’t go to special needs camp until he turns 5).
  • We started the Nemechek Protocol (involving a prebiotic fiber supplement, fish oil, and certified extra virgin olive oil from California, as well as some dietary improvements).
  • I ordered (and received) some CBG oil which I have not given him but tested on myself. It was FOUL. It tastes like eating a joint. With none of the pleasant effects. I’m going to hold off on this for a little while since I do want to see if Nemechek gets us anywhere (though I am super, super skeptical).
  • We sent off his pee test for neurotransmitters recommended by the integrative ped but I have not yet had the heart to take him for all of the recommended blood tests. Thinking I’ll save that for Presidents Week when the kids have off from school (never mind why it’s a whole WEEK!?)
  • And I’m still lurking in the biomed groups and the parent support groups online where everyone has a “protocol” for this—GFCFSF diets, chelation, antifungals, antibiotics, probiotics, hypobaric treatments. The possibilities are endless. The patents are pending. The costs are high and the risks are too. And I flip flop daily/hourly/by the minute about wanting to stop this regression, to stabilize him and to do anything to get that verbal, expressive, responsive little boy back. . . to 100 percent understanding and supporting the premise of neurodiversity and that autism is a “difference” and not a disease to be cured. And that to even tiptoe into the arena of “miracles do happen” and to wish for “recovery” is to reject and diminish the very person my M is. Which I would never want to do. Because I love that boy beyond anything I could have ever imagined. And I want him to be safe, and functional, and happy. And it makes me crazy.

So, since this is all completely overwhelmingly beyond me right at this moment, and I’ve hit an emotional wall with it, and there are no right answers to any of it, I decided to take a break over the weekend and do something simple, and healthy, and good for our family. I ordered a bread maker from Amazon. And it arrived today (yay, Prime delivery!) It has a 13 hour delay function so that I can put all of the ingredients in the machine the night before and then wake up to fresh baked bread in the morning for making toast, French toast, sandwiches for lunch, and more without all of the preservatives and junky oils in the store brands. And if I decide to go GF it has a gluten free function, and a dinner rolls function, and even a pretzel making function.

And in this I can be doing something good for M without all the controversy. Because M likes bread. And I’m ready for the challenge to hide an entire head of broccoli in a loaf of “bread” slathered in butter that M will actually eat. Recipes much appreciated if you have any to share!

Supplements, diets, and more protocols

A couple of posts ago, I mentioned that we started seeing an integrative pediatrician again and that I’d fallen down a rabbit hole of Facebook groups and autism parents taking their kids’ medical care into their own hands.

This continues to make me nervous, because I consider myself pretty smart, but in health-related medical stuff I have no idea what I’m talking about.

Sure, I can read books and medical journals. And I understand them decently well, sort of. But I don’t trust my layperson’s understanding of something this complex. And I’m not even sure how to know which research is believable. Because *everyone* has a protocol for “curing” autism or improving symptoms, or bolstering communication skills. (Caveat: I’m not looking for a “cure” but am desperate to slow down, or stop, this constant parade of developmental regressions. My worst nightmare is that M regresses so much that he’s no longer able to go to school, get his needs met, or perform basic self-care, and over the past year we have seen some progress in some areas, but overall we’ve had declining communication, increased self-direction and so much constant scripting that it’s more and more difficult to get beyond the stims and have any kind of meaningful interaction with him).

When we went to see the integrative pediatrician, she met with us for almost two hours, taking a complete medical history and asking a million questions about M’s development. She sent us home with a pee test for neurotransmitters:

She gave us a prescription for a TON of blood tests (I’m still gathering the courage to do these after last weekend’s 24-hour EEG).

And she recommended four possible treatments, sending us on our merry way to research them.

  1. Phosphatydilserine (100 mg/day) to improve brain functioning.
  2. LDN (low dose naltrexone). There’s a book! (There’s always a book). So, of course, I read it.

3. CBD oil – I’ve ordered CBG oil instead (basically, the “mama” of CBD oil), after joining a Facebook group and doing a bunch of research. I’m going to take it myself (for its anti-inflammatory and anti-anxiety properties) and then possibly start M on it, after trying some other things first.

4. Augmentin (yes, the antibiotic) — but not for the antibiotic. She recommended this because it is the only way to get clavulanic acid. I’m guessing this is because clavulanic acid is known to destroy some amino acids and so taking it would potentially help in case of a metabolic issue.

We have done the neurotransmitter test and we are doing the blood testing, because I love me some data. But I’m just not sure about these other treatments. I’ve done a whole bunch of research, and I’m still just not sure. I don’t want to put M through anything that could cause any harm at all.

So I’m looking for something to try that’s totally safe. That has worked for real people with autistic kids to improve attention, focus or communication. So based on some parent recommendations, I’ve read this book:

I’m more than a bit skeptical of anything that promises “miracles,” but I read the book. And I definitely do not understand very much of the *science* behind it (I suppose I can just take his word for the different types of gut bacteria and how to nourish them or kill them off, and I still don’t understand the whole bit about microglia and “neuronal trimming”). But the whole premise of the book is that a few simple changes (which are cheap and easy to follow and safe) can restore “typical” neurological function. And all you have to do is the following:

  • Take inulin daily (inulin is a prebiotic dietary fiber that is quite safe and the worst side effect would probably be the same kind of digestive discomfort you’d experience from having lots of fiber in your diet. It comes from the chickory root. It’s not expensive and widely available in powder, pill or gummy form.
  • Take a high quality fish oil (we do this already—Nordic Naturals is our brand of choice)
  • Eat foods that do not contain any oils other than: canola, coconut, palm kernel or EVOO.
  • Cook everything in EVOO (which must be certified from California since imported oils may have other stuff in them), and/or take 1/2 tsp of EVOO a day.

And that’s it. You have to discontinue any use of probiotics on Nemechek, since the inulin, fish oil and EVOO is meant to restore gut health and probiotics can mess with that. But this is a very simple change for us. We already use olive oil (so I just ordered an approved one from California to replace my Italian import), and it would be easy to add the inulin gummies to his current gummy vitamin routine.

So, despite that I’m skeptical, we’re starting with Nemechek. Since M only eats 5 foods (all beige), we can’t do crazy diets (such as the GFCF diet) without serious meltdown risk or risk of starvation. And some of the other suggestions freak me out.

So: I’m dipping my toe into this self-directed supplementation business based on crazy things I’ve read in books and on the internet. And I’m worried, a bit. But the many doctors we see don’t have any answers. They have no idea why M lost all of his words. They can’t tell me what happened to cause this, what was going on his brain at 2 years old that’s so different from what’s going on at 4. They can’t say if it’s metabolic, or neurodegenerative or was just a one-time thing. So if I can try things that have no risk of injury that might actually help (inulin, fish oil, EVOO and CBD oil fall into this category), it feels worth a shot. But there are murky areas in this—some of these other things are riskier. And I don’t think I feel comfortable with LDN, augmentin, or chelation, at least not at this point.

Mom

How have I lived for forty years believing

Chicken wings and the end pieces of the bread are your favorites?

Without seeing how long you wore that threadbare brown coat,

And how you never went back for seconds?

NYS OPWDD Eligibility 101

This is a post for the ages. I have been worried, and confused, and dreading, the OPWDD eligibility process for at least a year because of how confusing it all is. The website scared the pants off me, the litany of new acronyms were completely overwhelming, and I couldn’t get past the first form, which I just was not at all sure how to fill out.

In a moment of weakness, when feeling completely overwhelmed by CPSE meetings, evaluations, parent trainings and work madness, I asked Chris to “deal with it.”

And he did. He went to a “Front Door” orientation (which is step one, sort of). And came back with a binder and an hour and forty five minute audio recording (barely audible). Which (I guess) I was meant to follow up on because he didn’t actually understand anything from the meeting and then didn’t do anything for months and months. This was back in August.

Double middle fingers up!

Fast forward four months and I realized I had to take this thing into my own hands. Because Chris is an awesome dad, and incredible at a million things, but this—this soul-sucking DMV stuff—is not his strength. And it’s important.

And I should have known that. And we would have been four months into this process already, which is known to take a year or more. D’oh!

So on Monday night, I packed the kids up in the car and went to a workshop on how to navigate OPWDD at a local nonprofit, the Family Center for Autism, through which we already get services for M through my private insurance. It’s a great organization. And they had child care during the workshop, which was awesome. It always makes me nervous to leave M with untested caregivers, but since O would be there too, and these people know autistic kids, I charged O with keeping an eye on her brother and being the “helper” to the “teachers” that were there. And she loved the idea of being responsible and having a job to do. After a few attempts at eloping that were expertly thwarted, I felt confident in leaving the kids and headed down the hall to the workshop, which was excellent and left me feeling totally prepared to take this on.

So, here’s my takeaway on how to navigate NYS OPWDD:

Step 1. Attend an OPWDD Front Door Information Session. The sessions are 2 hours long and are offered regularly. Once you attend and sign in, you receive a “certificate of completion” (Chris went, said it was barely 90 minutes, but doesn’t seem to have this certificate. Sigh. I’m sure we can get one because they have a record of his attendance, but I may need to attend one myself).

Step 2. Contact one of three CCOs (Care Coordination Organizations). You can do this after, or before, attending the Front Door Info Session–it doesn’t matter. You just need to attend the session before applying for eligibility (so to me it makes sense to do that first). The three CCOs in NY State are:

Apparently, there is no real difference between these three organizations (yet) because they are all new — NYS just moved to this new system recently and so there is no “history” for any of these companies. So I chose Advance Care Alliance, because the website looked good and instead of randomly filling in a “request for info” in their “Contact Us” area of the website, they listed actual humans you can write to. And so I internet-stalked the three people listed as responsible for my region on social media and made a totally subjective judgment call about which person would be the best fit and most responsive.

The email I sent was as follows:

Dear ______,

I hope you are well. I’m writing to request a Care Manager for my son, M, who will be turning 4 in just a few weeks. 
I’m not sure how much information you need to kick off the process, so I’ll do a brief bullet list here and include attachments as indicated.

  • M was diagnosed with ASD at 2 years old after a precipitous developmental regression.
  • M is currently in a specialized preschool (through CPSE) where he is in an 8:1+2 classroom. He receives ABA therapy in our home 4x/week (through my private insurance) and takes a social skills class on the weekend (also through private insurance). 
  • We are primarily looking for the provisional OPWDD eligibility status kids can get prior to age 8, but would also like to attain a Non-Medicaid Care Manager so as to get on the road to securing Medicaid. We are looking for Medicaid so as to obtain additional services (e.g., specialized summer camp, some of which will only accept special education students with Medicaid).
  • My husband has already attended a Front Door Information Session on our behalf. Attached is the completed Transmittal Form he received at that meeting (though I’m not sure if I’ve checked the right box in Section 4).

Please let me know if anything else is needed to begin this process and thank you so much in advance for your guidance on this. The process is complex and overwhelming, and we greatly appreciate any help you can provide.

I am available by phone at XXX-XXX-XXXX.

Thank you,

Teresa I

I’m guessing this was a good way to start, because here is the response I received the very next day:

Hello Teresa,  I want to promptly acknowledge your email.  Clearly, you have navigated the complicated system well so far.  I am going to work with our intake department today on options as it sounds as though your end goal is to acquire comprehensive care coordination.  Correct, M will need Medicaid to connect to those services. 

I would like to give you some detailed information on the most efficient way to  acquire these services, but need to consult with our ACA intake staff first.

You will be hearing from me within the next few days, if not sooner.

Thanks for reaching out!

I’m encouraged by this. It seems that I probably should have requested “Comprehensive Care Coordination” rather than the piecemeal request I sent, so keep that phrase in mind if you’re in the same boat.

Step 3. Along with the Care Manager, you must now fill in the gads of paperwork required to determine OPWDD eligibility. The Care Manager is supposed to help with this, but I am also attending a February 4th follow-up workshop at the Family Center for Autism where they will help to review our paperwork just in case. The first form is the OPWDD Transmittal Form. Along with this, you must submit the following:

  • IEP from School (current)
  • Psychological with Adaptive Testing — Note: one test for adaptive functioning that is widely accepted is the Vineland, which can be administered by a psychologist, but we had ours done by the BCBA at the Family Center for Autism when we applied for ABA services through our insurance (within 3 years)
  • Psychosocial (within 3 years)
  • Medical (within 3 years)
  • CARS or ADOS (for Autism Diagnosis)

Once this packet of material is submitted to the local DDRO (Developmental Disabilities Regional Office, the local branch of OPWDD that handles cases in your area), we are supposed to hear back about eligibility within 3 months.

An important point to keep in mind about eligibility that isn’t clearly published on the OPWDD site in a way that’s accessible to laypeople:

Everyone at the workshop and on the FB pages keeps talking about the “scores” (adaptive and IQ). In order to be eligible, IQ must be 60 or below and/or adaptive functioning must be above 70. For our CPSE evaluation, we had the Bayley Scale done, which did show M’s IQ at 90 (hallelujah!) but he’s had both the Conner’s and the Vineland come back with a composite score of 70. Which is just one point shy of qualifying him, I think. So we may need to get another evaluation, since the latest we have is more than a year old and M has had a series of developmental regressions since then, so I suspect his adaptive scores have changed for the worse.

Step 4. Once determined eligible, you are able to apply for Medicaid for your child, which will be the funding source for all of the services your Care Manager will set up for your child. Your Care Manager will help you with this process.

Note: if the child is under age 8, you’re only getting provisional OPWDD eligibility and will need to reapply just prior to age 8 for permanent eligibility, or you lose it. It is my greatest hope that we will no longer need services for M after age 8, that he will make so much progress that he can function in life without supports, but that hope is growing smaller and smaller as he rounds the corner to age 4 and is still very severely impact by his diagnosis, not responding to his name or answering yes or no questions. But miracles happen, so I’m taking it one day at a time.

Step 5. Once you have eligibility and Medicaid, an OPWDD Front Door Liaison will conduct a phone interview with you (which could be 90 minutes – 2 hours long). Your Care Manager can apparently assist with this interview. This interview is to help guide the services your child will receive.

Step 6. Once you have eligibility and Medicaid and have had your interview, services can begin. Your Care Manager will work with you to set up services for your child and Medicaid will pay for those services. You will receive a PISP (Preliminary Individualized Service Plan) which needs to be submitted in order for you to receive your HCBS (Home and Community Based Services) waiver. This waiver funds the services through Medicaid. Your CM will send this packet to your local DDRO and then you will receive a NOD (Notice of Decision) noting whether or not your child has been approved for the services requested. Once approved and implemented, your PISP becomes an ISP.

In order to maintain services, there is an Annual Recertification process, which requires the parent to either go to a recertification meeting or rectify by phone each year.

Once your child turns 18, you would need to apply for SSI (Supplemental Security Income) benefits for living expenses, etc. as well as to maintain the Medicaid benefits, which would ride along with the new SSI (and becomes lifelong, so you won’t need to re-certify each year).

Since M is only barely 4, I didn’t tune in to the 18+ conversation. I don’t think I can fit any more acronyms into my head right now, and I won’t need to know those for more than a decade, at which point I’m sure the system will be totally different.

Hope this is helpful to someone!