I'm having difficultly explaining my child has autism and need the time off all the time. Seriously people's expectations versus handling reality are very misaligned. Everyone constantly tells me I look sleepy and I've over heard from some that maybe I drink too much. They don't understand the time it takes to drive a kid to see 3 different specialists every other week, to drive to and from ABA therapy (which doesn't keep consistent hours or after care) they don't understand that she can't get into daycare (she's been kicked out by almost everywhere) and they definitely don't get why I'm like just a grain of sand away from losing it.
Hey, just want to say that I've watched my own parents handle this with my youngest brother (now 13). It's incredibly difficult and draining both physically and emotionally. I can't imagine how tough it is first hand as a parent.
It depends. Autism is a spectrum, not a single condition. I have two children with autism, and they are different. The younger one is much more self-sufficient than the older one. Has it gotten easier? With the younger one? Yes. With the older one? No.
The reasons are many. Both are still in diapers at 8 and 9 (soon to be 10), though the 8-year-old is getting potty trained. We are hopeful. The older one will probably never be out of diapers. The older one is also fairly big for his age. He always has been. He's also strong, does not know his own strength, and almost the height of my wife. She cannot lift him. Luckily, he's an affectionate child, so usually he just wants hugs or to sit on laps and be tickled. We have a stroller for him so we can take him places as he has low-tone muscles. Both are a flight risk (though the younger one is better now). The older one would wander into the road without a care.
But it's hard. Really hard.
And as they get older, there will be less and less support. At some point, we will not be able to properly care for him. However, society for the most part ignores this (despite the US doing a very good job compared to other nations).
I love my children. I love that they are happy. They smile, they laugh, and that's all I want for them for their lives. Your priorities as a parent quickly changes when you learn this. Instead of hoping they have a good job and are successful, you reevaluate your hopes and aspirations for them and you. You realize that success isn't money or a startup, it's happiness. If my older child is happy for the rest of his life, how can I feel anything less than joy. I know people far more "successful" and far more "wealthy" and "doing what they love" and yet, they won't ever be as happy as my sons are.
But it's hard. It's just hard because everything is harder than it should be. Everything takes longer, everything requires compromise, and not everything is available to you.
The thing to remember is that my story is mine alone. Autism is a spectrum, and some will have it much easier. I love my two boys, and I would do anything for them, and all I want is for them to be happy.
I still remember when my daughter got assessed and the psychiatrist basically said. I know you probably have hopes and dreams for your daughter. But you need to put those away and forget them. That she would never be able to talk etc. My daughter can now talk some, I think she understands more than she lets on. We're doing great with potty training fortunately what we have are severe behavioral problems and communication. (She refuses to wear clothes, hits and bites, and basically screams all the time)
It's just harder than most can possibly imagine. When I look at her I see both my hopes and dreams from when I first held her still. The worst is seeing parents and neurotypical children together. I'm both happy for them but I get so envious. As time goes on too I'm finding my extended family invites us to less and less.
As a high-functioning, doggedly independent diagnosed autist: thanks a ton for your efforts. My parents did the best they could, and I'm uncomfortably aware of how much effort it must have taken at times to deal with my particulars. They never quite knew what they were dealing with, but they gave me unconditional love and support, and ultimately that's what mattered most, even if they failed at understanding my particular needs/quirks. I'm sure I gave them a hard time much of the time.
Other than that I'd suggest looking into health care in other western nations. I'm being vague because I don't know your particulars, but so far I've been quite impressed by the support provided in Europe for people on the spectrum. It's not ideal, but it's affordable and the quality seems alright so far.
If there's nothing in particular keeping you in one place, and if you can find work elsewhere, it could be worth exploring expat life if you have one or more autistic children. And it could be great for yourself too.
Thank you. We already moved from Canada to the US precisely because of the support issue. While it could always be better, I should make it clear that Pennsylvania has been wonderful in its support so far.
However, you make a good point, and yes, we have no fear of moving as needed. Whatever it takes.
It's different, certainly. I'm talking second hand about someone so I don't want to attribute too much of what are my observations as truth - but he's definitely more aware of when he's struggling and can articulate that better compared with when he was younger. He's also at a secondary school with very small class sizes that's set up to help with cases like his, which helps.
He does have other health issues that make day to day life difficult in other ways, so I don't want to say everything's rosy. Still lots of hard work for my parents to manage.
It can be tough to find the niche to thrive in, but I've seen it work quite a few times. So at least it's possible. Sometimes it does require a degree of permanent care by parents/guardians, but some degree of autonomy and even 'thriving' is possible. Don't lose hope!
Often, the burden seems to shift from providing direct care to struggling with the financial and legal issues of institutional care. It's awful, but I've seen too many friends travel too similar paths to believe it's not common. :(
My child is on the spectrum. His symptoms are relatively mild by comparison it seems with yours. It's still tough for me and my wife. I hope you are able to hang on to that grain of sand. I know how hard it is.
For others to suggest you're drinking too much is both strange and absurd... it would be one of the last suggestions I were to brainstorm, but perhaps I'm naive in that regard.
Hey, that sounds really tough and the drinking sounds a bit worrisome. I'm not a stranger to either of these issues, so please don't hesitate to send me an email. Don't be a stranger :).
EDIT: both the perception of being a drinker and actually being a drinker, obviously at different times in my life.
I have a brother in-law (20yo) that's also on the spectrum (aspergers).
In an attempt to help with general anxiety that's associated with Aspergers, we introduced him to marijuana (as it has a relaxing effect), but that just mainly causes more anxiety.
However, it turns out that microdosing on psychedelics has been quite the panacea. I'd highly recommend reading the book "A Really Good Day" that goes over the safety aspects, myths and such.
In a span of 4 months, the kid is completely changed. Far more sociable. He's communicated that his anxiety is gone. He has become more thoughtful and far more self-sufficient. His ability to communicate/articulate his needs & desires, relay stories from his day are new behaviors that have presented himself since this regimen has started. In a sense, he has gone from "more autistic" to "more typical teenage/young adult boy" in a span of 4 months. He still does say that his condition is still apparent and that his ability to intuitively react to emotion/facial expressions/body language hasn't necessarily developed, but with the anxiety removed, now he can read body language cues with ease as he is not debilitated by the anxiety of the interaction and move forward in the interaction rather than recusing himself and living in his own bubble.
The reason this appears to work is because psychedelics increasing brain plasticity/neurogenesis. Even after the doses stop, the benefits will continue to remain as new neural connections have become established. A regimen can be used for say a month or two and be stopped with the benefits derived, so it's not something one necessarily needs to engage in for the rest of their life.
His immediate family doesn't know that this regimen is taking place, but everyone in the family during gatherings attributes his demeanor change to his "summer job" which "opened" him up, and are so "proud" of him and his growth. Of course, spending 12 years in a social school environment did nothing to open him up, but a 3 month summer job did the trick. chuckles
Of course there are stories of people who have taken very large tripping doses and have had catastrophic effects, so it isn't without risks, however, it appears that the risks are pretty minimal and also very manageable at microdose quantities.
So far in my microdose experiment, n=5 have had absolutely no ill effects and has been tremendous boon to mental state/cognition/clarity in general.
That's great with the psychedelics. It's a promising treatment from some stuff I've seen with PTSD patients.
RE: cannabis. Most cannabis you buy is high in THC, which causes anxiety. You want the high CBD, low THC stuff. CBD has anti-anxiety properties and is actually relaxing, especially at high doses. As a bonus, it does not get one high. I also recommend a vaporizer pen or edibles instead of smoking.
Could you elaborate on the specifics? I have a microdosable bit of LSD at the ready but haven't had the courage to try yet.
EDIT: I feel anxiety is the worst of it. I can accept being 'weird', and my OCD-ish tendencies give me comfort. I mostly struggle with the anxiety, and weed has not been a good solution.
Texas. Wait list is 19 years. We get some services but we're past the age limit on most of those. Not to mention most of them are so defunded it's like 30 mins of speech therapy available a month...
Your best bet is to move. Massachusetts, New York, New Jersey, California, Minnesota have good services. Texas defunded special ed in schools and the Feds cracked down on them so now they have to provide services but it will take years to get enough providers. I would move. But what you want is a center based program (so you can work). You can find these in Arizona and Florida as well I believe but there are issues there due to republican control of the state legislatures. FYI Minnesota HAD crazy wait lists and a Federal judge admonished them for not spending the money and things turned around in about 2-3 years. So we do have limited providers with about a 6 month wait list and only 1 provider in the metro area for kids older than age 7. So I would say Massachusetts or New Jersey or New York.
In my experience school districts are terrible at providing services. You want county level, private insurance or Medicaid. Also you want to be in a college town or near a college town because 90% of the line ABA therapists are college kids (supervised by a BCBA etc.. and up to a psyD etc... that helps staffing immensely. California has a 6 month wait at the regional center level for assessment, Minnesota has a SMRT wait of 60 days if I recall correctly but the bigger issue is ~6months to get into a center based program.
If moving is not an option another idea is to start a program. You are not alone and other parents will band together. For Texas it would fill a huge need.
EDIT:
Article discusses New Jersey and their well established system.
Fellow Texan. We have a 16 yr old girl on the spectrum. Not sure how old your daughter is. The public schools are required to provide service (even before starting school) once your daughter has been officially diagnosed and it's recorded in their records. Also it's hit and miss regarding schools. We've had bad elementary, middle, and high school. We transferred and found good schools. Some school care (and "get it") and some don't. Keep up the good fight!
Huh.. do you have to disclose minor child disabilities? I’ve heard obtaining citizenship becomes more difficult but temporary residency while a child should be ok.
