Aspie parent with aspie child.....ren.

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I was just diagnosed on my 11 year old's birthday on the 16th of September...
I just turned 27 years old on the 22nd of September. To put it lightly, life has been excruciating...
The neuro psych explained that I fail to pick up social cue's and have difficulties understanding others and their intentions, which can lead to soooo much pain :/ but that story can be expanded on a later note.



I will summarize:
I have failed marriages with 2 literal monsters, the first was a pedophile (I was 15 when I had my first child/ he was 22) and the second, 10 years my senior, was hands on physical abuser and implied pedophile (found stuff on the computer that was all downloaded the same day as my oldest daughter's birthday sick ugh....thankfully he was never ever alone with her/I reported it)

Anywhoo-


I'm divorced and have 3 beautiful children that I am the sole provider for. As you can imagine this is difficult...
My overall symptoms that I have difficulty with would be:
My gaze is intense and primarily makes people uneasy so I avoid eye contact.
I have isolated myself in an effort to avoid being taken advantage of...
I have 0 friends, unless people on facebook count, but I tend to be a lurker and avoid talking to anyone who shoots me a pm on there, I do like to post information on things and reptiles to try and expand peoples minds, but that's generally as far as I take it...
I have photophobia (light)/Hyperosmia (smell) and SEVERE hyperacousis (a collapsed tolerance to usual environmental sound).
On a lighter note I have taste sensitivity and LOVE to cook I can take a dish I have never eaten before and name the spices used and recreate it without prior instruction.
I have an obsession with researching (literally researching EVERYTHING/ what is life without learning?) psychology, photography and <3<3 REPTILES <3<3!! !!
My children all have traits and similar sensitivities, my son has a diagnosis of emotional/sensory disorder and is in developmental preschool for his social difficulties, we will be looking at a diagnosis shortly I can assure you. His IQ was recorded at 115+ before the age of 4, I heard the testing isn't always accurate but everyone thinks hes much older than he is because of his understanding of concepts and extravagant verbal articulation.
I had to take him out of daycare because of his over-stimulation driving him into fight or flight, I called everywhere seeking help... I finally received some relief after I found myself in the ER with myself and a social worker hanging on to the back of his shirt in an effort to keep him from falling head first over the edge of the gurney and cracking it open during one of his meltdowns (My mother coined this as "normal" behavior/ said they had to put me in a bear hug at daycare to calm me down/ as you can imagine her and I are not on talking terms any longer, who allows their kid to suffer like that????!??!?!? ...) Social worker promptly made a few phone calls and got me in touch with a behavioral health institution who didn't want to do an evaluation, (I had previously seen 3 other institutions seeking help followed with the same disregard) I ended up having to call Arizona Department of Health Services to enforce RHBA law that states
"Children presenting for inpatient hospitalization or emergency services must be assessed withing 24 hours of notification of the emergency and or children referred for non-emergent services must be assessed within 7 days of the referral"
He received an ADHD/NOS, even after the psych viewed the developmental pediatricians information. I took him to a neurologist as well during this time because often times elements of his meltdowns looked very similar to absent seizures, I received tenex and OT script ( OT script from the developmental pediatrician as well). I was extremely hesitant about the script but the neurologist explained it better than that the psych who had originally recommended it stating that it would calm him enough for him to absorb the occupational therapy, my primary physician explained also to me that it should help eliminate the flight or fight response, I also so the developmental's complimentary nutritionist who explained that the flight or fight episodes were due to sugar drops and that he metabolizes food so quickly that he needs to eat a high protein diet every two ours to keep him level.
So with all of this information I ended up following these recommendations. The medicine alone improved his ability to regulate his emotions, then I implemented the diet which resulted in a NT boy. So I hypothesized weaning him off the meds and just implementing the diet....
I missed one crucial thing...
My son does not eat off of the medicine, he was sickly skinny before he started taking it, he looks so healthy now
My son was a ranting,raving, lunatic sitting on the bed screaming for hours when he finally weaned completely off the medicine... so naturally that "healthnut" plan (I prefer natural alternatives) was thrown out the window :/

Then to make matters worse I recently had to transfer him to a new provider, because the old one was pissed off that I called them out on RHBA law in order to advocate for my son and was trying to kick me out of their practice weekly, I couldn't fill his script through them (the requirement of the neurologist) so naturally I transferred, this facility seems promising, I hope...
I had an overnight EEG done for him, I did not administer meds so I could make sure he was not in fact having seizures during these meltdowns as epilepsy runs in distant family. That was a horribly fun 24 hours... not. Good news, no seizures, doctor noted he presents a heart vibration when off the medication.
He's also a bed wetter when he doesn't have his medicine, so this medication proves significantly beneficial...

So I'm forever tied to it... it seems, I really honestly don't want to be completely dependent on something that could easily be dismissed by a doctor, its scary, I don't know what to do...

I was placed on meds about a year ago for (pre-aspie diagnosis) ADHD, they wrote me a script for adderall and it literally has made life less agonizing, it slows me down and keeps me from scattering on the things that I scatter on, but the things that I devote my focus are definitely more difficult to sway... but overall it helps, especially if I have a meltdown, it moves all of those yucky thoughts and whispers out of the way so I can "adult". I have also found that it has decreased my bloodpressure (pre-tenex script) because it removes a lot of stressful thoughts and it generally calms me, it overall decreases my sensitivity. But again I don't want to be tethered by a medication, being dependent on people... it scares me. I have a script for the tenex as well, I don't like the days that I skip it, I have this rage that lingers under the surface... so I am currently weaning off of it, when I am on it, I am calm and relatively "normal" but if I miss a day, oh... its awful... I can go off my adderall with little to no side effects, just the normal me comes back... and thats a tough thing to live with... before adderall I took caffeine pills as brewed caffeine makes me jittery, it helps keep me calm and a little focused, off of everything I am a massive spaz and its awful lol.


I also take vitamins to help with my neurological functioning, I take udo's omega 3-6-9, magnesium citrate, potassium citrate, ALCAR, Vit C(acerola & rosehips, Collagen (I get stressed and it helps keep me from developing severe psoriasis)


I have been looking up people who grew up with aspie parents, I feel bad about my sensitivities a lot with my kids. I enjoy reading about the people who remembered the loyalty and devotion their parents showed... my whole life revolves around them and everything I do is for my kids, and I hope they remember that and not the frustration I express due to my sensitivities, I always try to explain the reasoning behind my upsets and they seem to be doing much better, trying to make sure not to leave stuff on the floor for me to trip on, finding their inside voices and generally figuring out appropriate times for certain behaviors. It's also hard because I have roommates, an older man who most likely has a very similar diagnosis to my own(if he were to ever be assessed) that doesn't have the tolerance for my children. So I have to make sure everything is nice and that is difficult when a 3 and 4 year old with sensory issues that like to ransack the house. Its a big house and he works a lot, so I just try to stay out of his way when him and his older daughter are home, but I am also looked at like a nanny, one who does nanny duties AND pays rent...

I wish I could work, the neuro psych said they are going to try OT with me to help, but its hard for me to even fathom as I have no desire towards money...

Does anyone else have that issue, of literally only caring about your interests and maybe your child and living on bare minimum because there is no reason to do more, no drive? I'm not depressed at all. I wish I could live on a hill in the middle of nowhere, in complete silence, I have no interest in having a relationship ever again with all the pain ive endured, I would like to just talk to someone once in a blue moon and then go back to my solitude... everything else is literally too painful sensory wise...
Any other aspie parents out there that have difficulty parenting? I use earplugs a lot, I can here the undertones and I don't get so overstimulated that I have to retreat...

Try this thought on for size - you are the one who was raised by an aspie parent. Except your parents didn't have access to books, articles, and forums on aspergers. They didn't that they shared their traits with a whole group of people. They didn't have support from medications. And then you were born, and the loved the stuffing out of you, but they had no idea how to deal with your sensitvities. They didn't even understand that your sensitivites were unusual, because that's always the way they experienced the world, and nobody told them otherwise.

uhhh, I'm confused, that's what I am saying... they didn't "love the stuffing out of me" I was and am still treated like I never should have been born... My parents were doing drugs when I was a child, the fights were awful and my sister attests to how many time she's sheltered me from the rage and the insanity, on top of that they were drunks, still drink (my mother), not so much my father (I think its like a lingering cloud there)...
My father drowned my "mistakes" (the divorces) in cash with 2 shoddy lawyers, it was my own footwork that landed me into full custody of the kids... I appreciate it, I do, but you cant throw money at something and expect it to fix itself in time and not make similar "mistakes" because I didn't know what to recognize in the first place... God... I still don't, after all the abuse and sick idiots, I tried dating, I finally realized I don't "click" with anyone and my own mind would drive me batty worrying about another person, I have my kids to worry about... I don't need that crap. There was only one person I clicked with and he very well may be an aspie too, being an engineer and all, I can say that was the only individual I ever loved... other than my children of course. I care about my father still too, despite all of the neglect and pain, I still wish that there was a relationship, but he's replaced me with my older daughter, says that it feels like I never left....

That was excruciating, I still tear up thinking about him saying it...

But this post wasn't really about me.. it was about my children and trying to connect with others experiences on being a "good" parent for these kids, and also not forgetting about myself in all of the chaos... I cater to all except myself, as long as I feel appreciated, I'm happy to do it, but that's the problem, I don't feel appreciated, I guess I'm looking for some assurance somewhere...
I don't know ...
It's all so much :/

You asked about how to be a good parent. I responded that way because I know that often the best way to start being good to our kids is to come to term with our own upbringing. I'm not saying that the things that happened to you weren't really bad. I'm saying that if you come to peace with them, you'll be more free to be creative in meeting the challenges that you face with your own kids.

I apologize for being on the defense, your right. It's a painful subject :/ But I'm trying.

If the meds are working for you and for your son then it might be best to stop worrying about taking them. Accept the reality that they are making life bearable right now and move on. Yes, people or events or whatever may suddenly knock those crutches out from under you but it is a waste of time and effort to worry about what may or may not come to pass.
I am an aspie parent to three grown children. My parents were extremely neglectful and my mother was downright abusive. My children have some of the same issues as me to a greater or lesser degree. If you are trying your best, expressing your love no matter what they do, working hard for them, and explaining your weaknesses then eventually they will grow to be adults that see you as a real human and not a supermom/dad and love you anyway. At least that is what I have found so far.

True.
Thank you.