Wednesday, December 31, 2014

A Stitch in Time: Learning to "push back" in the right way for the right reasons

A Stitch in Time: Learning to "push back" in the right way for the right reasons

[These comments come from a post to a closed FB group reflecting my personal circumstances occurring up to October 13, 2013.]
An UPDATE on the continuing saga of the water & mold damage and needed repairs and the take-away lesson for wives of Aspies: KNOW what is going on with your home repairs and homeowners or renters insurance and push back to get the appropriate coverage to protect what you own. It is a necessary area to navigate. We do have to "pick our battles", but, in my experience, this is one where we should not relent until we know we are protected either with insurance coverage or with a HUGE emergency fund that nobody can deplete without the other's consent.
Because the damages from several long term leaks are so extensive (10%-20% of the value of our home) and because with mold and structural damages you do NOT fudge it with DIY approaches, I have called in professionals at every juncture, not consulting my *estranged* ASH on how to proceed any further-- his "repairs & maintenance" to date have created the mess out of teeny tiny small issues that hiring a qualified plumber now and again could have prevented.
Professional #1 plumber- $800 in emergency repairs-- these were the "it's dripping now and if you ever want to dry out, you need to fix it now". That does not include several tasks he did for free and one he recommended (replace rubber washer hoses with reinforced hoses) and another that was far worse than I knew-- the kids bathroom toilet *rocked* because it was not fastened down properly-- at some point, it began leaking raw sewage under the house every time it was flushed-- by 4 kids... for who knows how long!!
Professional #2 mold remediation & general contractor to inspect the damages and make necessary repairs. Current estimate:$10,000-$25,000 in repairs to the kitchen and bathroom.
Professional #3 the family law attorney: $5000 retainer to defend my right to have the repairs done should estr. ASH object.
Professional #4 my personal financial adviser who has custodial control of my individual IRA-- if all else fails, I can draw against my IRA for "hardship repairs" to our home. (side note: the sum total of my *personal* retirement funds are about 1/10 of all he holds for retirement in his name alone.)
Professional #5 licensed insurance agent for a NEW homeowners policy-- because ASH let the policy lapse in 2010. I may have to sue ASH to pay for a new policy, but it is going to happen. I am not waiting another 9 months or more until the divorce is final to get a homeowners policy back in place! I have seen what can "accidentally" happen to quietly destroy a home when & where you can't see it!! It is possible, I am not certain, but an annual policy of $2,500 would have paid for the repairs and even our accommodations for the 2 or 3 weeks of displacement at local rental or hotel rates which are still at late tourist season prices.

I feel this is pertinent to the group because I have read here over the last 6 months that home repairs, hiring professional help and finances are all often a points of contention in our AS/NT marriages. We try and we try to negotiate to an agreement where we feel safe, secure, and well-protected in well-managed homes. For many of us we have thought we just had to logically present the merits of our argument in favor of a *professional* stitch in time with an ASH whose favorite ownership motto is "owner's manuals are for sissies!!" & "run to failure!" (meaning run a machine until it gives out with no hope of repair); never realizing that no "appeal to logic" on our part will win him over to understanding our need for a clean, safe & tidy *nest* to nurture ourselves and our families.
But this is NOT just about my need for that sense of security, it also is about his long awaited retirement. I take no joy in financing all of the above, knowing that I will have to sue him to repay it all out of the funds he is so desperately trying to protect for his retirement, but the alternative is my children living in a moldy water-damaged house that is now structurally unsound, never seeing their mom take a stand for her own well-being or theirs. Really, if all they see is that I took them for therapy and then accepted all his garbage decisions to punish me in return *without objection*, WHAT am I teaching them? What have I really achieved. Every decision he made without my agreement has been penny-wise and pound-foolish. Life is complicated. Stuff happens. Stupid stuff happens.
EDUCATE YOURSELVES and protect your basic interests--without malice or resentment! Just quietly do what you are sure you should do. Maybe you will make a mistake, but then you will learn and you will do better the next time. God will be there for you teaching you how to sort out between trustworthy and untrustworthy people. It really feels amazing learning how to trust my own judgment again. It is HARD and some days I cry a bit, but they are healthy healing tears. Maybe, just maybe I could have learned to push back a little sooner and years ago my husband would have responded better, maybe?
Maybe you can learn to set these boundaries sooner rather than later and feel good about your own sound judgment and decision making *in partnership* with your spouse... but don't just let it all go for weeks and months and years-- eventually such negligence will come back around to bite one or both of you. No loving heart can ever relish the thought of "If he would have only listened to me, this would not have gotten so out of hand." It will one day break your heart to have to make him accept ugly consequences of his poor family management, or it will just break you having to try and cover your losses. A stitch in time with love & courage is all that I am suggesting!

[In reply to a group member's comment.]

I do not feel these are truly hardships-- though they are hard challenges. I have witnessed many who face true hardships, greater difficulties than this with far fewer resources. I am just *finally* exerting my right to be an adult with equal say in all matters that affect me. I am finally, really truly *growing up* and it is a good season though very much pushing me to my limit daily and sometimes hourly. I reach a point and say, "Come on, God. You gotta be kidding me. I thought THAT back there was my *limit*, as strong as I could be on my own two feet for as long as I could stand it!!" and I feel Him surrounding me with love and grace and peace and strength in my spirit, and I might cry if I have the time for that or I might just force myself to breathe more purposefully to exhale the stress and *buck up* because I realize I am not facing anything without resources and I have not yet been tested to the point of shedding my own blood and people handle stuff like this ALL THE TIME IN THE REAL WORLD and don't meltdown over it!!! I am just not used to the freedom of leaving the Aspie meltdowns out of the equation in making daily decisions, small or large. Remember I have spent *almost every single day* of my *entire life* trying to negotiate almost every decision with one Aspie or another!!! Suddenly I do not have to anymore!! I am the grown up in charge here!! I can just gather information, make my informed decision and move on to the next thing. I do *not* have to cater to Aspie whims anymore, whether child or adult, I am the NT adult in this house and I just need to learn to live with loving respect and regard for the NEEDS but not all the whims of my ASD children and teach my kids by my mature independent example to do the same with others, including me and their dad when he is around for a visit.... I DO very much need your prayers, but I am going to make it just fine!! I come here to *give* encouragement as much as get it everytime!!

Wednesday, June 11, 2014

Faith, Hope, Love & Aspirations: a Blog & Community for the Families of those on the Spectrum

Faith, Hope, Love... and Aspirations

What do you do when you realize that your loved one, your child, your sibling, even your parent or spouse is on the Spectrum?  Autism Spectrum Disorders(ASD) are so varied that two individuals with the same diagnostic label may not seem at all alike in personality or temperament or in their therapeutic needs. The further you go in researching and seeking understanding of what truly defines ASD, the more easily you will recognize what it is or is not in family members. There are those so "high-functioning"(HF) on the Spectrum, that they may live an entire lifetime and not have been suspected of, let alone diagnosed with, anything more precise than being "difficult to live with". They may have very, very successful professional careers, make significant contributions in their fields of expertise, they may re-write the very basics of the underlying theory of a discipline, and revolutionize human thought in such areas... and still be very "difficult to live with". Possibly, these very intelligent individuals may have seemed to present issues primarily in substance abuse, alcoholism, bi-polar disorder or narcissism and found no help or success in treatment for these things because of the underlying Spectrum issues having gone unrecognized. So, very possibly, you may be the adult child, sibling, spouse and parent of, say, 7 different Aspies, and approaching or have passed mid-life, before you ever come to learn the definition of Asperger's Syndrome or other Autism Spectrum Disorders and realize how deeply it has affected your life. You could well spend decades of your life wondering why it is just so very difficult to relate happily with certain family members who actually profess vehemently to love you.  Have you wondered why that certain someone, though quite intelligent, clean, dry, sober, law-abiding, is still just the source of so much pain and misunderstanding in your life?  And then somewhere along the line, the term describing a condition called Asperger's Syndrome (AS) comes to your attention and you have an epiphany, an "Aha!" moment, and as all the intellectual and emotional dust settles, a paradigm shift, all the multicolor puzzle pieces fall into place before your eyes and you see it.  This person is actually "wired differently".  They see what they see and nothing more. Actually, our trying to explain to them a perspective beyond their own may cause them great confusion and very real distress-- producing an otherwise incomprehensible response of explosive anger or sudden complete withdrawal and silence.
What do you do? You go back to the basic, fundamentals of who you believe you are and who made you and why you live and breathe at all. You go back and ask, "What now? What does this change? Were the tenets of the faith I was living up until yesterday still applicable and strong, and right and true enough for me to continue to live them from here forward?"
How do you re-examine your life philosophy and continue to function? You might have to go to ground, go into hiding from some who make needless demands on your time and energy. You might have no choice but to continue much of life's busyness and have to just turn off extraneous media and technology to hear your own thoughts clearly and really feel some of the feelings these thoughts produce. You might seek out counseling or support groups-- be very careful here-- good, wise, well-meaning people can give a great deal of *good, solid, proven advice* that actually does not apply whatsoever to relationships with those on the Spectrum. Believe me in this, if someone is not professionally trained specifically  in dealing with ASD, especially Asperger's Syndrome, or does not have personal, extensive life experience with close family members on the spectrum, their advice can be worse than inapplicable, it can be absolutely damaging for you or your loved ones.

I will tell you what I needed to learn to do: protect myself, think for myself, think about and care for myself.  The spectrum member of the family is one with "high needs", but that does not mean the NeuroTypicals (NTs) are entirely without needs. Our NT needs are just as real and just as important as those of the ASD person.  We need to remember or maybe realize for this first time our right to our own aspirations without explanation to satisfy those in our lives on the Spectrum.

aspiration [ˌæspɪˈreɪʃən] n
     1. strong desire to achieve something, such as success
     2. the aim of such desire
     3. (Life Sciences & Allied Applications / Physiology)
          a.  the act of breathing
          b.  a breath
     4. (Linguistics / Phonetics & Phonology) Phonetics
          a.  the pronunciation of a stop with an audible and forceful release of breath
          b.  the friction of the released breath
          c.  an aspirated consonant

There are many, many things in my life- very legitimate hopes, dreams, aspirations, and even very basic needs that the Aspies in my life just cannot comprehend.  I love this comprehensive definition of "aspiration".
Honestly, I actually, literally spent decades debating my right and need to manage my history of ASTHMA as I saw fit with more than one of the Aspies in my life.  After a lifetime of debating with siblings my right to hold my own beliefs and know my own thoughts were true... really it was just a progression.  So, my friend, go ahead and BREATHE.  You cannot live questioning your right to think and feel and move and love and breathe freely. You may have died on the inside long ago from doing just that.  If you have had individuals with undiagnosed Autism Spectrum issues in your life for any length of time, you may have become so disoriented or confused that you are unconsciously holding your breath waiting for the next thing, the next blow-up, the next meltdown, the next unprovoked outburst, the next withdrawal, the next argument that cannot be resolved, the next irrational demand for you to surrender another piece of your personhood...

Please, dearest, go ahead and breathe, deeply and freely. Weep if you must. Be gentle with yourself. Be kind and encouraging to yourself. You are NOT ALONE.  We are here building a faith community that will help you remember to breathe while you find that God has this, too, under control and He will walk with you.

The Hebrew word for Holy Spirit is the same for breath.  As the Father hovered over the lifeless clay of Adam and breathed into him "spirit" and "breath" and he became a living being, let Him hover over you now and breathe life and breath and spirit into you so that you may begin to live again in freedom. In the name of Jesus Christ, receive new life.  We can walk this walk with the Living God dwelling inside us. We can do anything He is calling us to do in the name of Jesus.