Overwhelmed would be an understatement, but the closest word to describe the past few weeks.
The details of everything would bore anyone, just because it would be too damn long to read. But I need to get at least part of it out, so here is the condensed version.
In addition to running an entire clinic, with minimal help (see staff shortage and the hospital’s tragically long hiring process), Diego has had me in the ER and doctors offices a lot more than we typically are. In he past D has had some abnormal test findings for his brain and DNA, but typically we don’t visit the doctor ‘doctor’ this much.
The abnormal brain finding shows that the part of his brain responsible for his visual motor skills is being pressed against by two dilated perivascular spaces, so he will have to work harder in an area where he already has difficulty due to his autism.
His DNA shows a balanced translocation and chromosome deletions that currently have ‘undetermined clinical significance’ (aka waiting on research to catch up) and now we can add a benign abnormal heart rhythm with possible premature atrial contractions or the benign abnormal heat rhythm with panic attacks. The brain and chromosomes are old news for us as it has been a few months. The heart is new and is what has kept me running around (even more so than usual) like a chicken with her head cut off. We are currently waiting to see the cardiologist to hopefully give him a clean bill of health, other than the arrhythmia. While I am hopeful that what is going on has nothing to do with his heart, it breaks mine to think that my baby at the age of 5, is having panic attacks.
Diego is verbal, but he still has a very hard time with his expressive (and pragmatic) language. Anyone that has experienced an irregular heart rate can attest to the fact that it causes one to be more aware of what their heart is doing and usually causes alarm, even if one already knows that it is due to caffeine, etc…
But I think that when it happens to Diego in addition to the usual things that assault his senses, it is all too much and ends in a panic attack :(.
I am almost positive this isn’t a cardiac issue, Diego’s anxiety is constantly through the roof. If it isn’t a cardiac issue and is an anxiety issue, I am sure someone is going to hint to an anti anxiety med for him. To possibly avoid any new medications, I am going to work with him on new relaxation techniques and how to apply them when his heart rhythm changes. I will still obviously work on recognizing and expressing the anxiety, but the heart rhythm is tangible and my little concrete thinker will hopefully apply the relaxation techniques that I teach him are “for when his heart acts funny”. I really don’t want him on anymore meds.
Behavior has also been an issue, we were tweaking his Risperdal dose (not causing the heart issues I checked 🙂 ) and his beahvior was just escalating. After emailing Beth and Kim (Thank you both for being amazing) and hearing about their medication experiences it was all too obvious that I needed to take him back down.
So I did.
I was increasing it on our Neuro recommendation to hopefully decrease the frequency of meltdowns, especially since it had already provided some slightly positive results with the intensity of his meltdowns (aka his self injurious behavior). I am going to take the behavior we have now, it is an improvement, even if not ideal. We will also continue to try techniques that aren’t medicine.
The increase had me ready to enter the loony bin and probably poor D too.
I am going to end this with a plea to you all. California is proposing a 750 million dollar cut to DDS services, as a result of this they are trying to impose new guidelines for services that would violate our children’s rights under The Lanterman Act. The DDS has posted a survey for parental feedback and of course the questions are just difficult enough to try and discourage us from answering.
KTLP has posted responses to the questions as a guideline for parents, this is listed after the survey link below. Please follow the link below, complete the survey and help us advocate for our babies.
I spent 16 months fighting to get D into the regional center, I needed help paying for the very expensive ABA therapy that D needed, that is all I wanted from them as my insurance has covered most everything else (after some pushing on my part). Thankfully he was finally qualified for services two months ago, but there is still a lot of red tape to navigate until he gets his ABA therapy, possibly costing us another precious few months.
That was 16 months he could have been getting ABA by a behaviorist….not mom, but because we couldn’t afford to hire someone and The Regional Cener screened us out (due to their ‘standards’) with no compassion, we lost that precious time. These new ‘standards’ that they are trying to impose on POS services will hurt the development of a lot of our children.
Thank You 🙂
Here is the link for the survey,
From the KTLP Website:
Statewide POS Standards will KILL the promise of The Lanterman Act. If you want to stop this, we suggest you answer the DDS Survey something like this:
Question #1: Suggested service standards about who should receive these services:
Answer: Those individuals whose Individual Program Plan (IPP) team has identified a need for these services, as described in The Lanterman Act Section 4646 (a) – (d).
Question #2: Suggested service standards about how often a specific service should be provided:
Answer: As often as the IPP team determines is necessary, as described in The Lanterman Act Section 4646.5 (a) (4).
Question #3: Suggested service standards about how to make sure the services provided are useful and effective:
Answer: Usefulness and effectiveness of services should be determined by the IPP Team at every IPP meeting, as described in The Lanterman Act Section 4646.5 (a) (6).
Question #4: Suggested service standards about the qualifications and performance of the person or organization that provides these services:
Answer: Services should be provided only by persons or organization that are properly vendorized as described in The Lanterman Act Section 4648 (a) (3) (A).
Question #5: Suggested service standards about the payment for these services:
Answer: The Lanterman Act, in Sections 4648 (a) (5) and 4690 requires the Director of the Department of Developmental Services to develop and maintain equitable processes for setting rates to assure that Regional Centers can secure high quality services for persons with developmental disabilities. The Director should comply with these laws.
Question #6: Suggested service standards about the responsibility of parents and consumers for these services, e.g., co-payment, time commitment, etc.
Answer: The State of California has accepted a responsibility for persons with developmental disabilities and an obligation to them which it must discharge. (The Lanterman Act Section 4501). The state does not ask parents and students for co-pays in California’s pubic schools and the same logic applies here.
Question #7: Suggested service standards about self-directed or self-determination options for these services:
This question cannot be answered until California has a clearly defined mechanism for implementing self-directed or self-determination options.