Recently, someone (cough cough MBee cough cough) brought up a really good point. There are things that I don’t always share.
I don’t not share them because I’m hiding something, they just don’t seem that important. Things like, what we eat for dinner or some of the everyday positives.
The reason for this is that I simply don’t have the time and energy to report every single detail of my life.
It’s hard enough to keep up with all that I already share. While much of what I share could be deemed, negative or unpleasant, it’s what our life is actually like. That’s not to say that good things don’t happen, it’s just that they are often drown out by all the unpleasant things that are happening.
I make a concerted effort to both focus on and share the positives as often as I can.
Unfortunately, when you’re in the thick of it and dealing with this stuff, focusing on the positives proves to be much more challenging than one might think.
As an example, and please understand that this is only meant to help you gain perspective, this is what’s happened in the last 24 hours alone.
Gavin was been confirmed to be both psychotic and manic, which is a huge deal and something that is very serious, as he can unravel very, very quickly.
Within the last 1.5 hours, both water and gas were shut off. I was able to immediately fix the water as it was the first to occur. Dominion arrived a few minutes later and actually shut us off. You may be asking yourself, didn’t that just happen about few weeks ago? Well, your right.
Here’s what happened. About 7 months ago, when I made a payment to Dominion, I accidentally wrote the the check out of the wrong account and it was subsequently returned. That was totally my fault and I accept complete and total responsibility for that.
It happens, at least in my life.
Anyways, when we were shut off a few weeks ago, we were actually shut off for a few days. I made several calls to confirm the amount that we needed to pay in order to get the gas turned back on and our account back on track.
They gave me an amount.
I even called back again because I wanted to make sure that we were told the correct amount because I was basically robbing from Peter to pay Paul.
Again, they gave me an amount and it was consistent with what I had already been told, so I made the payment and things were turned back on.
Today, Dominion showed up again, this time with a much higher amount, that’s significantly different from what I had been told or what my statement reflects.
The guy that came out even said that this wasn’t right and he tried to call and figure out how this could have happen. Unfortunately, Dominion wants us shut off because of the bounced check 7 months ago and this guy has to do his job.
Ultimately, it’s my fault for what happened 7 months ago. Having said that, why is it just now becoming an issue, when only a few weeks before, everything had been fixed and we are moving forward? Perhaps an accounting delay?
As you can see, just in the past 24 hours, things have gone down hill and while I’m hoping we’ve hit the bottom, past experience tells me we haven’t.
I’m really overwhelmed at the moment and as we move into Father’s Day, I feel like a complete failure and totally undeserving of the holiday.
Lately, I’ve been distracted by Gavin’s health, this Child Protective Services debacle and Lizze’s constant pain. For a long time I was sharing daily victories and forcing myself to find at least one positive thing to share each day.
I have gotten away from that and I will work harder to remember to do that.
However, it’s important to remember that sometimes, in our lives, there isn’t a whole lot of positive.
Having said that, the comment that my reader had made makes a great deal of sense… So, in the spirit of honesty, I want to open up the floor and give you all the opportunity to ask me any questions you may have. Perhaps you want something clarified or you’ve had a burning question that you’re just dying to ask.
If they’re serious questions, I’ll do my best to answer them as honestly as I can. I won’t entertain those trolling and looking to start drama though. 🙂
Don’t worry about them being too personal, if they are and I’m uncomfortable, I’ll pass on the question but remain unoffended. 🙂
Ask away………
This site is managed almost exclusively via WordPress for Android. Please forgive any typos as autocorrect HATES me. 😉
Visit the My Autism Help Forums
To reach me via email, please Contact Me
Test
(Part 2) After
I saw this program on the Discovery Channel I made my friend watch it. She’s
been suffering from migraines so badly for so long that she contemplates
suicide on a weekly basis. I told her to get tested for Ehlers-Danlos. Lo and
behold, the genetic test was positive. Now everybody in her family is getting
tested for Ehlers-Danlos as well. She has a 4 year-old nephew with newly-diagnosed
autism. While I was reading the book “The Out-of-Sync Child” (about
Sensory Processing Disorders) I came across a page that said “Syndromes
that coexist with SPD–and often go misdiagnosed–are . . . Ehlers-Danlos
(amongst a list of other things). For children with these syndromes, OT using a
sensory integration framework can improve motor, social, and language
skills.” Her nephew is going to Tufts for the standard autism genetic
workup in a few days (to rule out Fragile X, etc) and now they can get him
tested for Ehlers-Danlos as well. It’s possible that if he has it, it’s adding
to his sensory issues. I feel obligated to help you guys get her tested for it
because this one TV program has already helped one person dealing with excruciating,
chronic, debilitating migraines. I’d feel so relieved if a Neurosurgeon
discovered that Lizze did in fact have a Chiari Malformation because that can
be fixed. And she wouldn’t have to suffer every day of her life. Please keep me
updated!
Definitely
book Lizze to see a reputable NeuroSURGEON. A lot of Neurologists have never
even heard of a Chiari Malformation & would misdiagnose it. The reason I’m SO
insistent that a Neurosurgeon reviews
her films is because my brother had a Chiari Malformation. He also has bipolar
disorder & Asperger’s. So every time he went to the doctor’s they would
treat him like he was just suffering from depression. The pain that my brother
endured was absolutely heartbreaking to watch. He stayed with us for a day or
two (he lives near Portland, Maine with my parents. We live near Boston) & the sound of him vomiting in the shower
so violently that he pulled muscles in his back & chest is something I’ll
never forget. I couldn’t stop crying. He had his surgery at Tufts in Boston. He’s got a gigantic battle scar, but he
doesn’t care. The constant crippling pain is gone. The double-vision, the
passing out, the vomiting, the muscle spasms. Gone. It doesn’t mean his life is
all roses, but the pain caused by the Chiari Malformation would’ve made him
take his own life if it hadn’t been corrected.
Did you watch the link I sent you on Chiari Malformation? PLEASE do. http://www.youtube.com/watch?v=RcKfgBqU0H0
@Tammy yes we did. In fact we watched it together. Some of her symptoms are similar and some are not. The cyst she has is between the membrane and her skull. They said it’s full of CFS and nothing to worry about. Having said that, it thinks it’s absolutely worth asking about because anything is possible. Thank you for caring enough to share and follow up. I’m sorry I didn’t respond sooner. 🙂
Can’t someone help you reapply for social security for Lizzie and the boys? If anybody should qualify, it’s Lizzie. I would pursue that, even tho it is time consuming. What do your wrap around people actually offer in the way of help? Does your county have a department of aging and disability? Also medicare/medicaid should be able to provide some inhome help. If you do not want someone coming into the home, you may be able to provide the care and get some financial compensation for it. I am the caregiver for 2 of my kids, and probably wouldn’t survive without it. Find somebody to explain the benefits out there. Maybe the CPS folks can guide you if the wraparound people can’t come up with anything helpful. You guys need all the help you can get, and I truly hope ttto hear that something can be done to relieve the financial and emotional stress. Nobody can stand that pressure for too long…
KathyKohlBuehler We did consult with an attorney that specializes in SSI. He said it was a long shot at best and that it probably wasn’t worth it.
If we do want to pursue it, moving her to the Cleveland Clinic was the first step in doing so.
As far as the caregiver thing goes, I had no idea that was possible. Thanks for sharing that. 🙂
It’s frustrating, but not everybody that you would imagine qualifies for Disability actually qualifies. I have Lupus (with organ involvement), Psoriatic Arthritis, Hashimoto’s Thyroiditis (with thyroid storms), Chronic Pancreatitis, Osteoarthritis, a knee replacement that was a hideous failure and had to be redone twice (I didn’t walk for 3 full years and am in constant pain), and Dysautonomia. Also gout leaves me unable to close my hands. I’ve been denied twice. It’s extremely discouraging.
Can’t someone help you reapply for social security for Lizzie and the boys? If anybody should qualify, it’s Lizzie. I would pursue that, even tho it is time consuming. What do your wrap around people actually offer in the way of help? Does your county have a department of aging and disability? Also medicare/medicaid should be able to provide some inhome help. If you do not want someone coming into the home, you may be able to provide the care and get some financial compensation for it. I am the caregiver for 2 of my kids, and probably wouldn’t survive without it. Find somebody to explain the benefits out there. Maybe the CPS folks can guide you if the wraparound people can’t come up with anything helpful. You guys need all the help you can get, and I truly hope ttto hear that something can be done to relieve the financial and emotional stress. Nobody can stand that pressure for too long…
Wasn’t Lizzie at one time offered botox to try to help her migraine? I think at that time she didn’t like the sound of that, but wouldn’t it be worth a try, especially since you can’t really afford the pain clinic right now? It must be awful for her to be in constant pain.
KathyKohlBuehler you are correct. The real concern is that botox hasn’t been shown to help her type of migraine. Out of desperation she had it scheduled a few weeks ago. However, she ended up sick and had to cancel.
The other concern is that the side effects can be worse headaches.
I’m not sure how I feel about the botox but I would support her if she decides to go through with it.
Excellent question. 🙂
KathyKohlBuehler you are correct. The real concern is that botox hasn’t been shown to help her type of migraine. Out of desperation she had it scheduled a few weeks ago. However, she ended up sick and had to cancel.
The other concern is that the side effects can be worse headaches.
I’m not sure how I feel about the botox but I would support her if she decides to go through with it.
Excellent question. 🙂
While I don’t doubt that your wife has headaches, a lot of her symptoms are textbook depression: not being able to get out of bed; unable to ” face the day”; chronic fatigue; very susceptible to stress; and I think once before you said she had a nervous breakdown.
Has she ever been evaluated by a psychiatrist and put on antidepressants?
@jimjohn Thanks for the great question. While you’re absolutely correct, these can be signs of depression, these are actually diagnosed problems for Lizze. She is suffering from severe depression and is being treated for it as well. She also has fibromyalgia, chronic migraines, tremors, PTSD (actually diagnosed), aspergers (or autism now, in the advent of the DSM 5), and is going through menopause at age 32.
She is being treated for depression and is on medication. We are also waiting for a special psychiatrist that deals with depression and women in menopause because things become more complicated during menopause.
Thank you for your question.
Rob, are you guys in process to get benefits for both of the younger boys? I mean with their issues it seems to me they should be getting SSI as well as Gavin. I know they’re young, but I didn’t think that age mattered when it came to disability.
elizabethtaylor202 honestly, we haven’t tried. We did try to get Lizze on disability but it was denied. We met with an attorney who explained what her chances were and that he wouldn’t even pursue it because they are really clamping done on claims.
As far as Elliott and Emmett are concerned, we were in a much better situation then.
How much finacial support do you get in a month
I ask out if curiosity not rudeness.
Also some amounts I see for food stamps seems high. Even higher than I spend.
Good question.
p123 the only financial support we get is Gavin’s SSI and about $400 in food stamps. Both have been lifesavers at times.
I have a question: what happened to Gavin’s bio-dad? It appears the man is permanently out of you guys’s lives, and good riddance. Is he dead, or in prison, or just gone? (If that is too personal you don’t have to answer it.)
MeaghanGood as far as we know, he’s living life without responsibility. He father 2 children, both severely developmentally delayed and with tons of medical issues. He lost custody of both and is enjoying live as a single guy, in southern Ohio.
To be blunt, the guy is an asshole. He abused Lizze and he abused Gavin.
Good question. I have no love for the guy, except that he did give us Gavin.
If Lizze and Gavin’s Biological Dad were still together when he was an infant, how did he develop such a degree of RAD? From what I remember from my college Psych courses, it takes a pretty severe amount of abuse / neglect to make the brain connections fail to develop. Was Lizze not allowed to care for him or something? I’ve just never understood that aspect.
@Chefaimee good question. Lizze and her ex husband were only living together for 6 months. Gavin witnessed the abuse to Lizze first hand. After she left, there was a forced visitation plan in place and Gavin spent 8 days with Lizze and 6 days with his father and paternal grandmother.
There are documented instance of Gavin’s biodad leaving him alone in his crib for over 18 hours at a time. Gavin had screamed himself horse, been in his soiled diaper and drank spoiled formula that entire time.
When CPS was called Lizze was told that unless he had broken bones, they wouldn’t investigate. That’s one of the reasons our whole CPS thing passes me off so much. Where were they when Gavin was being abused?
As time went on, Gavin would hide in the car during swaps and beg us not to send him. We had no choice. The times that Lizze tried not send him, court orders were issued saying that if she didn’t, she would be arrested and put in jail. The way the shared custody agreement read at that time was that if either parent was arrested or went to jail, custody reverted back to the other.
It went on like this for years and years.
It should also be said that the judge in charge of the custody case for the first few years was her ex husband’s onetime uncle. The judge was married to her ex husband’s aunt for period of time.
It wasn’t until we hired an out of town attorney that the judge stepped down.
We don’t know everything that happened while Gavin was “visiting” but we know enough to know that it was bad.
There is a great deal more to the story but hopefully you get the point. 🙂
lostandtired That’s so sad. It reminds me of the kids in those Russian and Romanian orphanages. In some cases the babies actually had a hamster-type bottle fixed to their crib so the staff wouldn’t have to feed them themselves, because there were too many kids and not enough carers.
It was a good question. I had wondered that myself.
When is the last time you and your wife got out for a real date alone? Can you describe the last nice evening out you had together?
@Jenny G Yeah…. I honestly don’t remember. On occasion, we get to sneak out but nothing ever fancy. We were sitting here trying to remember when the last time it was and the best we could come up with was when we took Elliott to see Gnomes and Juliet. Afterwards, we took him to IHOP.
That’s probably the last time we went to dinner and a movie and that was a long time ago and we weren’t alone.
@Jenny G okay, the last time we had an actual date alone? It occurred to me that the last time we truly had time to ourselves in that fashion, was before the Elliott and Emmett. Gavin in was much, much younger and Lizze and I got away for am overnight trip to our favorite bed and breakfast. This was located in the tiny town of Hartville Ohio and it was really nice.
We were in a better financial situation then and we went to a night dinner and walked around the town square.
I remember buying some snacks at the local Giant Eagle and going back to our room and just snuggling up on the huge bed and watching some movies on DVD. I had just recently bought a laptop that could play DVD’s and I thought it was so cool to be able to watch movies on my new computer.
When we woke up the next morning, the owners had made us this huge breakfast. Belgian Waffles, with fresh berries, bacon, eggs and blueberry muffins.
It was so relaxing.
Unfortunately, after that, they closed down and retired to spend more time with their grandkids. I want to say it was called Ivy and Lace.
Wow…..I hadn’t thought about that in years. It was a really long time ago but it was a really good experience.
I enjoy reading your blog for the content, but sometimes the lack of proofreading really makes me want to unsubscribe. It would be easier to read through your posts if there weren’t so many extra commas or typo/grammatical errors that sometimes completely change what you are trying to say. There have even been typo’s in your titles. I understand you say that autocorrect hates you, but if writing is what you do for a living I would think that you would take the time to read back over your posts before posting them. Otherwise, I do enjoy your blog.
@TJ you’re absolutely right. It comes down to the fact that I write almost everything from my phone. I also don’t have a lot of time to write so I try to update as quickly as possible. I’m not a writer that has had any formal education and so I probably do put commas in the wrong place. As for the typos, those honestly fall on the keyboard I use with my phone. The autocorrect simply butchers the spelling at times.
I am however, trying to make more of an effort to proofread prior to posting.
The title typos really hurt because once the post is published, it goes out over an extensive network and gets tweeted out over and over. Even when I catch it and correct the actual title, the tweets are still incorrect.
You are totally write. I need to be more careful. 😉
For the record, that last sentence was on purpose. 🙂
I’ve always wondered about Lizze’s chronic migraines. Not doubting for A SECOND that they are legitimate. It’s kinda like with my son’s chronic sinus infections–people hear that he’s been on antibiotics for several years straight and immediately judge me for that. As if I haven’t tried everything under the sun to keep him from needing antibiotics every day for several years. I just didn’t know what treatments she’s tried for them so far. Has she had an MRI? Have you see a Neurosurgeon, NOT just a Neurologist? I have a little bit of experience with migraines (my brother had a Chiari Malformation) so I don’t want to give you advice and have my advice sound condescending. Because with some people’s suggestions when it comes to my son’s sinus infections, I want to say “Seriously?! Are you really THAT stupid that you don’t think we’ve already had that test/procedure, etc done?!” So, just curious.
@Tammy that’s a good question and I totally understand where you’re coming from. She’s had an MRI and CT-Scans to rule out any possible physiological causes like tumors. She does have a cyst at the base of her skull but her doctors have said that it’s probably been there since birth and that is just filled fluid and not a problem..
She’s seen several neurologists, all the way up to the Headache Clinic at the Cleveland Clinic.
No one can figure out what’s causing them and why she doesn’t respond to the preventative. The current theory out of the Cleveland Clinic is that her pain receptors have been rewritten and that she now interrupts everything as pain.
She was supposed to go through the Cleveland Clinics chronic pain rehabilitation program but we couldn’t afford it and so that’s been on hold.
The other issue is the shear amount of stress that she experiences. Her doctors have been saying that extreme stress can render treatments ineffective.
lostandtired I really hope Lizze can get into the Cleveland Clinic program eventually. As you heard me say a million times, it was a godsend for me. If I hadn’t gone through it I might be dead now, no joke, the pain was so bad and so unremitting I was seriously considering suicide.
MeaghanGood lostandtired I really appreciate. It’s bad, that’s for sure. I don’t know how she does it.
lostandtired MeaghanGood She does it because she has no choice. People trying to cheer me up during the Great Headache Crisis told me I was “brave” and whatnot — well, what could I do but endure the pain? It happens, you have no control over it, you live or you die.
MeaghanGood lostandtired well said 🙂
lostandtired Okay, the fact that there’s a cyst at the base of her skull PLEASE PLEASE PLEASE watch this video about Chiari Malformation. You’ll understand why once you watch it.
http://www.youtube.com/watch?v=RcKfgBqU0H0