Tag Archive | special education

Be Careful What You Ask For!

Someone at another site asked me how I was doing…here’s what I shared:

“I’m sorry you are carrying such a heavy load.

I’m relatively OK.  I’m seemingly “stuck” in some type of quasi-PTSD hopelessness loop over not being able to get any positive traction on my son Josiah’s Special Education case.  I’m still furious about how they broke the law with impunity & how the legal protections for the vulnerable are twisted into butt-coverage for the bureaucrats…it makes one feel so helpless/hopeless.  I did Major work for like a year & a half on Josiah’s Special Education case & when we finally talked with an attorney (after some funding from a family member made such a conversation possible) he basically said “there’s nothing you can do for your son…but I’d really like you to go ahead & be an advocate for other kids”.

I’m not fully ready to concede defeat but am still so burdened by the pain & frustration of it all that it is Very Hard to move forward mentally or emotionally.

My husband wants me to speak with a Counselor but I am skeptical that there is really anyone out there (besides God) who can grasp the magnitude of what we’ve faced historically with our son, it’s ramifications in our lives & for me personally, & I can’t even muster the energy to attempt to contemplate having such (allegedly) therapeutic conversations.

I’m not (obviously) actually very good at “letting things go” & really need the Serenity Prayer conceptually to help with this process.  I hate to “give up” but I also hate to see the “system” escape unscathed & have Zero Accountability.  It’s also still too bitter & unapproachable to try to advocate for other people’s kids (even if I could muster the energy or find the appropriate avenue to do so) when there is still so much that needs attention in my own son’s life.

These are like those “first world problems” that lefties mock people for.  Not the basics of food, clothing, or shelter but more the apex of that Maslow’s Hierarchy of Needs Pyramids proverbial “Self-Actualization” BS arena, I think.

Sometimes I think I’m just too scarred from all the battles to even begin to know how to live in “regular” society.  I’m in pseudo-hibernation/cocooning in hope that (eventually) winter will end (my fat stores will melt off!) & I’ll emerge a beautiful butterfly with sufficient energy to pump those superfluous abdominal fluids into those nascent but hopefully beautifully majestic wings & somehow manage to soar above before my brief sojourn planet-side is over!

OK, so it’s very late & I’m expressing my self in verbose flights of fancy…Thanks for asking how I am…I hope you don’t mind my ridiculous reply!

If I may quote you here “I am an emotional basketcase and the pain is brutal and that’s the upside of my grief right now.”  I really do relate…”

Our conversation can be found here:

Prayer Requests – 9

Image result for butterfly scripture

from a Bing.com image search for “butterfly scripture”

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Thoughts on “I Can’t Do This Special Needs Life”

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from Bing.com image search for “special needs life”

It’s always with a bit of fear & trepidation that I ever decide to engage the special needs arena more directly than daily life requires, especially when it’s mandatory (like IEP time).  Well, this short article came into my inbox and some of her thoughts below really resonated…

I can’t do this; be a wife, a mom, a nurse and keep my tears behind dry eyes.  I had dreams of doing things in the medical field a lifetime ago. That didn’t happen for reasons upon reasons. But here I am, working (and living) in the medical field every day. I didn’t expect my patient would be my own child. Now that those long-lost dreams are alive and well in my everyday life all I can think of every moment is, “Please God, I can’t do this.”

from: http://www.keyministry.org/specialneedsparenting/2017/6/9/i-cant-do-this-special-needs-life

The bolded part in the above quotation is what got me back typing away here.  Through a series of seemingly random events I studied and graduated University with a Pre-Med Degree (BS, Bio-Medical Chemistry).  I did take the MCAT (Medical College Admissions Test) and did marginally well but just never applied to Medical School.  At that time I was getting burned out on an extreme science emphasis like my basically Chemistry Major/Biology Minor Degree had demanded; I needed a break.  Being pretty eclectic in my interests & “motivations” (if one can even say I have the latter!) I was just not really interested in then pursuing medicine right out of my undergraduate program; I ended up pursing Christian Counseling instead…

The ironic thing is that I partially made this decision because I “wanted to have a life” and thought the extensive studies and training involved in Med School would mean many years before I would get much reprieve or enjoyment out of living.  Amazingly, before a decade had passed, I too, like the mom above, was facing the most challenging of all patients, my own extremely complex special needs child, and truly my life would never be my own again…

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from a Bing.com image search for “sick child”

Frankly I don’t know how anyone copes with the challenges, upheavals, sorrows, rage, exhaustion, confusion, depression, isolation, and tediousness of it all without the Lord’s saving Grace & Peace!  These extensive trials have driven our family to the Foot of the Cross time & time again.  And even with His “Peace that passes understanding” there are many days when we just have to slog it out…& it ain’t pretty either!

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from a Bing.com image search for “comfort in suffering”

I still honestly don’t know what to do with all the “stuff” that has been crammed down into my soul with minimal if any real “processing” time or resolution.  It is difficult for me to make sense of some of those special needs experiences without some outlet for said processing–which is one of the reasons for the existence of this blog at all.

Only considering my “special” son’s particular needs, here’s some of what we’ve faced:

  • Pregnancy problems/IUGR (Intra-Uterine Growth Retardation AKA small for gestational age)
  • Prematurity, Very Low Birth Weight, 2# 6 oz (qualified for SSI in the hospital)
  • Failure to Thrive
  • Congestive Heart Failure
  • Complex structural birth defects
  • 2 1/2 months in the NICU (Neo Natal Intensive Care Unit)
  • Ambulance ride to a different hospital for Open-Heart Surgery
  • Living apart from my husband for 3 months during heavy season of stress
  • Inability to directly breastfeed my son due to his weakness, so nearly 3 months of pumping breastmilk for him to be gavage fed via a tube in his nose, or alternatively to feed his twin when we were apart because I was in the hospital with his brother around the clock…
  • Open heart surgery at 2 1/2 months & ~4 pounds; the night beforehand being the only time our entire immediate family was in one room together, as in I was preparing myself/us for the possibility that our son would die & that pre-op visit would be all the time that we ever had together as an intact family…
  • Urinary Tract Infection delaying hospital discharge, I discovered this
  • Relatively short time at “home”; Life threatening respiratory infection (RSV) leading to an across state ambulance ride and re-hospitalization, and the admission X-Ray revealing an unexplained broken rib so “formality” inquiries; he had a second RSV hospitalization when about a year old
  • Breathing Machine (Nebulizer) with meds & chest percussions
  • Seemingly endless vomiting with practically every feeding and/or dosage of meds
  • Various Proprioceptive & Vestibular interventions, brushing, joint compression, etc (mostly done by me)
  • Problems with hernias requiring near emergency surgery during the post-op phase from Heart Surgery
  • Visiting Nurses
  • Medicaid
  • WIC
  • County Health Departments
  • Numerous Medical Specialists with sometimes conflicting advice
  • In Home Therapy visits (PT, OT, Speech)
  • In Home Teaching, in three different cities
  • Preventive Care Services, support for a family in near crisis
  • Being written up in our local paper because of the uniqueness of our situation
  • Authorized coverage for respite child care so my husband & I could get a reprieve, but an inability to use this service because we couldn’t find anyone capable of handling Josiah’s needs and our other two or three kids…
  • Major behavioral & emotional problems
  • Balance Problems & Hearing Loss needing Myringotomy Ear Tubes surgically placed numerous times to help correct
  • Autism Spectrum issues, but not diagnosed early enough nor classic enough to get real help from the school system
  • Sound Field System in School
  • Neuropsychological Testing numerous times, virtually all data was ignored by school “professionals”
  • Unspecified Neurological Impairments
  • Balance, Equilibrium, Processing, & Sensory Challenges
  • Unusual Therapies; Sensory Integration Therapy, Music Therapy, Art Therapy, Social Skills Group, etc.
  • Early-On Program
  • Developmental Assessment Clinics
  • Virtually no “typical” twin experiences, nothing like what “the books” say
  • Complex staged birth defect surgeries
  • Positional Head Deformity, requiring an orthotic helmet to reshape the skull
  • Moving our residence across the state to be closer to adequate medical care (husband’s job change & our near year separation, except for weekends, during the entire selling/moving process)
  • Second Open Heart Surgery at about 4 1/2 years with statements implying that another heart surgery would be likely within a decade (though a 3rd surgery in this domain still pends)
  • High Blood Pressure, Blood Pressure Monitoring Machine, spotty compliance
  • Numerous Medications over the years
  • Social isolation for our son in particular, but our family as well, due to the complex challenges & lack of awareness on other people’s parts
  • Years of car rides, mornings, announcements of plans changing, etc that resulted in ceaseless screaming, hitting, kicking, etc…=familial upheaval
  • Years of deliberate “button pushing” of all family members, being a deliberate atomic bomb within the family=massive stress
  • Lifelong Pediatric Cardiology care
  • Lifelong Pediatric Urology care
  • Massive battles with Special Education after having positive Special Ed Pre-School experiences
  • Only one month in “real school” with his twin brother
  • Having to “repeat” a year of Special Ed Pre-school due to educational negligence, incompetence, &/or indifference & my own weaknesses in entering the fray
  • Severe Learning Disability in Math, misinterpreted as global delay
  • Tutoring
  • Being told for years we needed Advocacy help, but rarely finding any available and/or affordable
  • Community Mental Health, home & center-based care
  • Insurance challenges in getting needed services covered/provided
  • Respite Care, both in home and center based
  • Chronic Bedwetting, well into the teen years
  • Multiple Sleep Disorders requiring CPAP usage
  • Congenital Double Vision, eventually “corrected” surgically
  • Student Aides/Para-Professional involvement only after major battles with Special Ed even though doctors insisted this was vital at the outset of regular schooling
  • Massive Educational & Disability Discrimination…any real recourse here???
  • Learning about free advocacy training and materials but when pursuing them discovering the programs were cut; same now in relation to job training issues
  • Having a Brain Tumor and Liver Masses discovered at virtually the same time
  • Getting Cancer evaluations
  • Human Growth Hormone deficiencies, but no real treatment because of other complicating issues
  • Being accused by school staff of inappropriate behavior that he didn’t do, and not allowing a parent to be present to assist him in processing the situation
  • Brain Tumor removal through the nasal passage, so no visible scarring!
  • Ultimately needing & getting a whole Liver Transplant
  • Lifelong Liver Transplant Clinic care
  • ADHD, Depression, Anxiety, OCD (Obsessive Compulsive Disorder)
  • Unexplained dizzy spells, EEGs don’t reveal reasons
  • “Hypoglycemia”
  • Emergency Room Runs for injuries & once for an environmental breathing issue that I thought meant my son would die in my arms before we reached the hospital
  • Pervert encounters in the park as a child and at school as an adolescent, with major emotional fallout
  • Spiritual battles that periodically resurface & blindside & overwhelm him
  • Continuing to help him navigate the world, including processing why even though he and his twin brother are a minute apart in birth times their life experiences are worlds apart
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from a Bing.com image search for “comfort in suffering”

Well, my oldest son has mentioned on a number of occasions how I “never use my education”, since I’m not currently in the workforce.  It has honestly taken every aspect of what I’ve learned formally, inter-personally, spiritually, and experientially to navigate the extremely treacherous waters that Special Needs Parenting has led us through.  Some doctors have kindly indicated that I have a virtual medical degree by way of this personal parenting experience.  Whatever I have become, much of it is now attributable to being a Special Needs Mom.  It has become a burden, a badge of honor/courage, and ultimately a blessing.  In God’s Kingdom He brings Beauty for Ashes, Light from Darkness, and Hope beyond Despair!

Though I didn’t ask for this calling, as much as it lies within me, I try not to shirk the attendant responsibilities.  We’ve spoken as a family on these matters a number of times and we all agree we wouldn’t change things, even if we could.  As my eldest son has said, “Josiah is the heart of our family!”  So we are Challenged, Confused, Cracked Up, and Comforted by his uniqueness.  He still sees the Lord with “unveiled face”, being so pure of heart.  The rest of us might be relatively normal by this world’s standards, but Josiah stands tallest and purest in the Kingdom of God!  It is all of our privileges to walk along side of him in this crazy, painful, wonderful life…

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Image from a Bing.com image search for “beauty for ashes”

 

 

Commenting on “Caught in the Act of Bad Parenting”

“Now I’m a single mom who feels emotionally and financially tapped out raising a kid with a rare medical condition. Adding to the stress, my child has ADHD and ODD, which can’t be solved with a pill…”

This  quote is from the below posting (check it out)

https://lipstickandplaydates.wordpress.com/2016/09/11/caught-in-the-act-of-bad-parenting/

where a mom bares her heart.  It’s not easy to be this transparent with our struggles, so I really wanted to encourage her.  I’ve personally felt such tremendous isolation so many times in the process of trying to raise a special needs child and that’s while having an intact marriage and supportive husband backing and shoring me up along the way.  Either way I can’t imagine enduring such a challenging journey alone and how incredibly painful and overwhelming that  process likely is.

COMFORT IN SUFFERING? O yes! I hope you will share my joy over this precious scripture and make it one of your favorites too. I know it seems hard to feel like God gives comfort in suffering, but He promises to do so, and I have felt the comfort before, so I know He will give it again.:

The scripture image above comes from this site:

 

I hope (and pray) that the Lord is making Himself tangibly available to her and that she (& all of us bearing the burden of Special Needs Parenting) are experiencing that “Peace that passes understanding” and the “comfort in [our] suffering” that only the Lord provides.

Blessings to All,

Valerie

Your comment is awaiting moderation.

Thanks for being so real here. May God give you Grace & Strength…and glimmers of Hope when you most need them. I don’t know if parents without special needs kids will ever really “get” what all of us in the (typically un-chosen by us but Chosen by God) club of Special Needs Parenting have learned, what pretty much goes without saying. There aren’t really enough words to come close to articulating the loss, despair, terror, anger, confusion, frustration, triumphs, hopes, dreams, persevereance, faith, and even Joy in the Midst of Sorrow that seem ubiquitous to our experience.

I have many times found comfort, encouragement, and inspiration in the writings and stories of other special needs families…here’s one place where I have personally found such special sustenance again & again…

http://specialneedsparenting.net/

Please Hang in There–You are NOT Alone! Blessinegs, Valerie Curren

I just realized the date you originally posted this, 9/11–the 15th Anniversary of that tragic turning point of a day. Not everyone outside of NYC has forgotten (some of us Never will!)…my special son in particular is very mindful of the tragedy of that brutal assault of a day. We continue to Remember, Reflect, and Revisit those events so that we can honor the memories of the lost, exalt (and hope to emulate) the heroism of the brave, and continue to pray for Comfort, Peace, and Closure (if that’s even possible) for the bitter, bereaved, and broken…in Christ, Valerie Curren

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The image above is from this site:

http://www.crosscards.com/cards/patriotic/9-11-memoriam/

 

 

Commenting on “Autism it’s Different in Girls” (& so is ADHD)

looking for images with this post…here’s a great Pinterest site

I recently read an intriguing blog post by someone who has autism but chooses to remain Anonymous…hopefully there will be many other nuggets to mine in her blog as well as the interesting comments sections filled with feedback & unique perspectives.

I had wanted (in my comments below) to go into the girls aspect of Autism and mention how there may be a continuum between Autism and ADHD…I’d read a book a few years back that laid out a good scientific case for this insight.  Later, while doing massive amounts of research for Josiah’s special education needs/case I read a number of things that talked about ADHD and how it presents in females…and in particular how there are some mothers of kids with ADHD (and/or autism?) who were never diagnosed themselves but see so many of their “issues” reflected in their kids struggle…apparently to the point that this is a “thing” that gets some degree of recognition in certain circles.

(ironically, while looking for images found these “circles” supporting my views!)

Autism: Different, Not Less:

(from the above Pinterest board…and almost every item ascribed to my son)

Just a few of the many disorders associated with ADHD. Many have similar symptoms and impairments. Getting the correct diagnosis is further confused by the high morbidity rates associated with ADHD. (View only)                                                                                                                                                      More:

the image above is from this pinterest page

I’ve meant to look back on this topic for my own “edification” but have been mightily depleted by the Special Ed case and fallout that it just hasn’t happened yet.  In our family of 6, 4 have officially been diagnosed with ADHD, & the two that haven’t (myself and Brandon, Josiah’s twin brother) exhibit quite a few of the ADHD traits (but perhaps not enough to rise to the clinical level of diagnosis…but then again who’s actually asking to be “officially” labeled)…so we think we probably both have some part of ADHD, at a minimum.  So if the continuum theory holds water, could it be that people that have ADHD are on the (potentially) mild end of the Autism Spectrum?

It’s so hard to really say and it may in large part depend on who you ask and what their personal practice emphasis (if you only have a hammer then everything looks like a nail and all!) might be…It is supported in research, I believe, that many times the parents of kids on the Spectrum have many of those traits themselves.  Certainly when “we” were growing up awareness of Autism “Spectrum” issues was nowhere near the level it is at now.  Also, if it is shown that there is any level of a genetic component to Autism and/or ADHD it would stand to reason that these things would run in families to some degree.

In my own family, from a retrospective perspective there could be arguments made that both my parents have possessed some traits of ADHD, especially when younger.  At least one of my brothers had many such traits when young and his son was also officially diagnosed with ADHD.  My other brother has a couple of kids that seem to have a lot of such traits too.  My husband wasn’t diagnosed with ADHD until adulthood, but it surely negatively impacted his academic trajectory when younger, even though he has learned to “compensate” for the ADHD issues as an adult, as have most of our kids.

Most everyone in my present family has some degree of sensory issue and we all possess varying degrees of emotional vulnerability, but thankfully this trait is at least somewhat intermittent in most of us!  Could these also be evidence of the “Spectrum” Continuum?

The author of the Autism in Girls post speculates on how important it is to find out what is going on with you and to get that diagnostic label (paraphrasing without re-reading her actual words…so I could already be distorting inadvertently her view) and therefore enable some degree of an “Autistic Identity”.  This apparently resonates with a lot of her readers, at least those who have posted comments.  It’s possible that she  draws in these more “anonymously autistic” people by the very nature of the type of blog she writes, as in people who are on the Spectrum, but can “fake it” sufficiently for the outside world to not know they are autistic…

It’s hard for me to relate to the “need” to find an identity, like in Autism.  And frankly I really do not “get” that aspect of our current culture that seems to think one has to discover a “role model” to emulate in order to aspire to things that no one “like me” has ever done before.  This will likely be controversial, and even offensive to some (sorry)–but Obama being “President” of the US should not really make it any more of less easy for any other “black” person to be the President…if the job was about the merits of the individual aspiring to the position (and who could argue that this election year!) and not about someone’s “identity”…and if he had actually obtained such a job based on his own merits (which he manifestly did Not do based on his abysmally thin resume)–no “white” man with his background, (lack of) accomplishments, known dangerous associates, and incredibly thin skin would have ever gotten near to the place of getting his finger on “the button”…but I digress…

Anyway, I don’t fully get why so many people feel the need to find such a label and thereby get some type of identity by identifying with a group.  Obviously, for anyone who knows me very well, I have spent much of my life in isolation, going against the flow, and refusing to join into whatever “group” (like Groucho Marx I wouldn’t be a member of any group that would have me!)…so the herd mentality is far from appealing to me personally.

I do, however, take a measure of identity from my personal faith…as in I’ve considered myself a strong Christian for the bulk of my life and that remains my primary identity…but I am much more likely to think of myself as a person (even as an intellect) than as a woman, wife, mother, daughter, sister, friend, employee, neighbor, parishioner, or any other ready label, per se…

I will acknowledge, however, when it come to my son with special needs, Josiah, when he was first given the PDD-NOS (atypical autism) label it lead to huge sighs of relief for myself and my husband.  That was because we were dealing with so many issues back then that Autism at least made a degree of sense and it was able to take a number of his significant behavioral anomalies under its umbrella.  It is also true now that Josiah appears to think of himself as “autistic” and he uses that label, perhaps as a shorthand code, as a blanket explanation for various aspects of his quirkiness, at least that’s how it appears to me (I am in no way pretending to speak For him)…

I have spent so much of my life seemingly on the outside of whatever the group thinks it is or what it does that it’s actually harder for me to acquiesce to the “herd mentality”, even in a church setting where people are looking to foster “unity”.  This may be a holdover of the “rugged individualism” of the traditional American ideal that I do internalize to some degree, my own individual personality & intellectual makeup that always goes into suspect analysis mode whenever everyone around me jumps on some bandwagon (or follows some pied piper toward yet another cliff), or even can be an outgrowth of having lived virtually my entire life “counter culture” (especially now that Constitutionally Conservative Christian is virtually a pariah position in this formerly free land of ours).  Perhaps being an “outsider” is enough of an identity that it’s not necessary for me personally to seek other labeling for myself.

As far as role models go, though, as a Christian the Only real role model would be Jesus Christ…and that represents a role that none of us could ever live up to!

Philippians 3:14King James Version (KJV)

14 I press toward the mark for the prize of the high calling of God in Christ Jesus.

King James Version (KJV)Public Domain

above scripture from BibleGateway.com

(image from searching Google images for the scripture…may have been a youtube screen grab..but here is the link for the image…well it wouldn’t paste the link just another image)

So, thanks for listening in…and check out the original post below that my comment following pertains to…and let’s support those amongst us who are learning to speak up and speak out and encourage them to share their hearts with all who might choose to listen and care and handle our human frailties with tenderness and truth…

Blessings,

Valerie

Autism—It’s Different in Girls

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My perspective on this is a bit different in that I am a Parent of someone on the Spectrum who was diagnosed as “PDD-NOS” (Pervasive Developmental Disorder Not Otherwise Specified, aka “atypical autism”) and we got such a “label” for our son when he was still a preschooler. He also had many other issues that were primarily medical in nature and during key points of his life these medical needs really took preeminence (2 open heart surgeries, brain tumor, liver transplant, etc).

Our seemingly biggest challenge overall was in getting the educational system to even pretend to address his Actual Needs. We had years of frustration where they absolutely refused to acknowledge his autism diagnosis (in fact they never officially Did recognize that he was on the Spectrum, though his last Special Ed Case Manager did admit the obviousness of his Autism in private conversations with me). The school system was extremely derelict in its legally mandated duties to my son and we dealt with significant frustrations in this arena for the duration of his public schooling, K-12 (ironically special ed preschool did a Great Job with him, so our frustration was mightily increased by the torments that followed).

One extremely important aspect of special education law (in the US) involves Transition Planning & Services that are required to begin no later than the year the student is to turn 16. These services are to be tailored to the individual needs of the student and should be designed to facilitate their Transition from public school to Independent Living, Post-Secondary Education, and Employment. The ideals of this approach are laid out in detail in US law (IDEA, the Individuals with Disabilities Education Act & its later “improvement”), but our experience, and likely that of many others, reveals how far short of the legal mandates/standard things are…let alone compared to what should be “ideal” (as in identifying and addressing All areas of known or suspected disability, regardless of diagnostic “labeling”)…My son was “graduated” from high school not even possessing 3rd grade math skills and his now denied Michigan’s through age 26 special education because he “graduated”. I have a cousin with two autistic sons in Arkansas and her older son also “graduated” but struggled so significantly in college that she got him tested and discovered that his reading was only at grade school level even though he had a “diploma”. I don’t know how much she fought for him educationally but I know to what incredible lengths I went to over the years all to virtually no avail…

My son’s Primary Care Doctor, who has a practice devoted to complex special needs kids & families, including a significant cohort on the Autism Spectrum shared a chilling perspective. She said that the “high-functioning” autistic kids, like my son is now (he’s been significantly lower functioning when younger) are not coming close to having their needs met here in Michigan. If they are high enough functioning to be included in regular academic settings then often their “independent living” or functional “life skills” needs often go unaddressed. Once they get out of high school they discover that “the adult services industry” is woefully inadequately prepared to address so many of their needs. Also, because the many systems are so poorly managed and financially irresponsible and/or overburdened many times kids with significant needs do not come close to getting their needs met at any point…

Given that the “higher functioning” autistic kids are probably the ones most likely to be able to “handle it” to some degree in the regular/normal/neuro-typical world it would certainly seem in society’s best interest to help give them the tools and support necessary to foster their highest level of independence while young and thereby ensure a likely increasing percentage of such kids will grow into (nearly) independent adults. This would mean the possibility of significant resource allocation during the earlier years developmentally but should hopefully result in many more of these kids not needing nearly so much public support as they likely would otherwise had such intervention not have been provided. The arguments for early and intensive intervention for Autistic Spectrum kids have surely now made that perspective widely accepted and hopefully there has been sufficient time for data gathering to bolster this view “scientifically”.

In our family’s case, we spent many years and uncountable mental, emotional, spiritual, and financial capital attempting to get our local school system to DO THEIR LEGALLY MANDATED JOB…and these requests were based on data, diagnoses, and clear evidence of myriad needs (many in keeping with autism spectrum issues)…however the real bottom line was that my son got virtually Only what the school felt like offering whether it directly addressed his needs or not. And since they absolutely refused to acknowledge or address his Autism Spectrum issues (which were known as early as 2000 and had written behavioral pediatrician’s orders) he was significantly negatively impacted by not having received these necessary (and technically IDEA mandated) services.

The cost to our family (we had four kids within four years) was/is truly incalculable. I’m not “blaming” the school for all the issues, but had they done their job there are so many things that would have gone differently. For instance my son required significant therapeutic intervention, especially when he was younger, so we would take him to PT (Physical Therapy), OT (Occupational Therapy), SLT (Speech & Language Therapy), Sensory Integration Therapy, Music Therapy (which I tried for years to get the school to provide to assist in re-mediating his Severe Learning Disability in Math), Art Therapy, Psychological Therapy, Visual Therapy, etc…We spent so much of what should have been family free time shuffling him to and from these visits and when I finally stepped back from it one year due to personal overload and burnout basically watched him deteriorate before my eyes. He should have had year round intensive intervention provided by the school but they absolutely refused to analyze or address his very real needs and declines. I actually ended up dragging all my kids to random Vacation Bible Schools over a few consecutive summers just to try to give my Special Needs Son some degree of educational structure (and all the other kids really came to resent this as they got to attend these nearby VBS’s along with their brother). There were a few years when being out of school got so upsetting for my son that he lost his toileting skills…but they immediately returned when school began. This level of distress did not concern school staff at all but it caused significant suffering for my son…and the rest of us.

Well, this obviously went on Way Longer than I intended it to. I’m so glad you are putting your voice out there and speaking up on behalf of yourself and others who may not choose to speak but whose experiences and perspectives resonate with yours. My son has come such a long way from those virtually non-verbal and overwhelming sensory distress days to having discovered himself and continuing to refine his own unique voice. Although “movie quoting” and verbatim dialogue still punctuate much of his communication he can at least now speak as himself so much more freely now than ever before.

Loving someone with autism and living with someone on the Spectrum can certainly be a challenge (and I won’t minimize the major hardships of our personal journey historically &/or presently) but it also presents a tremendous amount of joy as well. Our “special” son is really the heart of our family in so many ways. He is a constant source of entertainment and his humor is so random that it continues to surprise and amaze us all, which is a huge blessing and counterpoint to the stressors. However he also represents a personal bridge between this world and the Kingdom of God (he is a very strong & outspoken Christian)…he has seen the Face of God while undergoing his Liver Transplant and (similarly to his dad) can have a nearly conversational relationship with the Lord. I really believe that his “autism” facilitates this transparency. Just as he doesn’t know how to put a “mask” on in his human relationships, he is virtually incapable of having a barrier between himself and God. Witnessing his Christian Walk is both humbling & encouraging for those who live with him. If he struggles to talk with us earthlings there is no communication barrier with his Heavenly Father…and that is a gift that no “labeling” nor lack of supports could ever diminish!

Blessings, thanks for all you shared, and thanks for letting me “wax eloquent” too here.

Best Regards, Valerie Curren

PS, I wrote more thoughts on your article at my blog here…I’d love to hear back from you on that, if you might be interested…

https://specialconnections.wordpress.com/2016/10/11/commenting-on-autism-its-different-in-girls-so-is-adhd/

this provocative image could lead us to consider these topics further…hmm; from:

http://theemergencesite.com/AutismSpectrumMenu.html

Image result for autism adhd

Commenting on Falling Forward

Below are my comments to an inspiring article here (and I’m copying an image below from that page too…it’s so inspirational!).  Please read her description of falling, wounds, recovery, and continuing on…especially in the strength only the Lord can provide…

https://angelaschua.wordpress.com/2015/01/21/falling-forward-tomber-en-avant/

Thank you for sharing this aspect of your journey…it is such an encouragement. I’m still in the process of getting up after a metaphorical “fall” in relation to helping champion my disabled son’s needs in relation to education and frankly am still reeling months after the fall. I’ve written about this topic in various ways, but particularly in the below noted posting at my “Special Connections” blog. Thanks for your encouraging words in the Lord.

Blessings, in Christ,

Valerie Curren

https://specialconnections.wordpress.com/2016/02/18/commenting-on-only-the-rich-will-have-rights-article/

I also allude to these struggles (in rising after a fall) here:
https://specialconnections.wordpress.com/frailty/

I’d love to hear any feedback from you if either of those posts might speak to you…

 

2015/01/img_6725.png

Autism Resources

General Links

http://autismlink.com/

This has a US map where you can click on your state for state specific info.

http://thecoffeeklatch.com/

This has blog radio programs and resources for families dealing with special needs issues.

http://www.especialneeds.com/

Has special needs equipment & products.

https://funandfunction.com/free-resources/

The FREE Resource page of a special needs products company.

http://www.autismservicesnorth.com/helpful_links.html

Autism links from an organization that helps military families affected by autism.

http://autismcanada.org/

Getting help in Canada with autism issues.

https://www.autismspeaks.org/

Many resources & info for people with autism & their families.

 

Michigan Specific Info

http://autismlink.com/business-category/mi/

This shows some organizations that help with autism needs in Michigan.

https://www.autismspeaks.org/sites/default/files/docs/michigan.pdf

Transition Timelines for people with Autism in Michigan.

 

Special Needs Parenting

http://www.SpecialNeedsParenting.net

Many Christian writers share the joys & challenges of special needs parenting.

http://www.hopefulparents.org/

For parents of special needs kids, a way to connect & find support.

https://funandfunction.com/blog/wp-content/uploads/2014/07/parents_guide_2nd_edition.pdf

Parents share opinions on a number of topics of interest, including Transition!

http://supportforspecialneeds.com/

Encouragement & insight for parents of special needs kids.

Righteous Anger

I just read an inspiring article at American Thinker.com, here:

http://www.americanthinker.com/articles/2016/02/why_rightwing_pundits_assail_the_righteous_anger_of_patriots.html

“Anger is among the first emotions in life.  A newborn baby, eyes still swollen and shut, asserts: I exist, I feel, if you hurt me (or not), you’ll hear my anger.  Anger provides vital energy for protection and survival.  It is the emotional state induced by the life-sustaining impulse to protect, to defend against or attack a perceived threat.  Healthy anger is hardwired into the nervous system as a reaction to pain and suffering.  Righteous anger is the highest form of healthy anger.  It is the beneficial force for good that forms in the self-respecting hearts of principled people who have been lied to and who are suffering because of it.  Righteous anger forms under conditions of oppression when moral, legal, or personal contracts are broken.  It is the force that impels, sustains, and advances political freedom.  In the fullness of time, it is the righteousness of anger that determines if it is creative or destructive.”

While this article is primarily dealing with anger as a motivator to action in the political arena…I am taking solace in the more personal applicability of using anger in a healthy response to injustice and abuse…at least in trying to find an avenue to channel the (understandable, at least to me) fury that still seethes just beneath the surface following the brutality and ineffectiveness of our recent foray into protecting our disabled son’s rights via a Special Education Due Process Hearing Request…

Josiah is by nature a warrior at heart.  He is a True Survivor and has Overcome many battles both medically and interpersonally.  Sometimes his passion can exceed his common sense and it is at those times of increased intensity that I often encourage him to do the bulk of his warfare on his knees.  His prayers are truly effective and focusing his effort on the spiritual battle is the way that we are most likely to see the walls come down.

In recent days when both my son and I have been so upset, and even enraged, by what has (or has not) happened in the legal arena it has been necessary to remind us both of what scripture says about anger.

Ephesians 4:26-27 New International Version (NIV)

26 “In your anger do not sin”[a]: Do not let the sun go down while you are still angry, 27 and do not give the devil a foothold.

Footnotes:

  1. Ephesians 4:26 Psalm 4:4 (see Septuagint)
New International Version (NIV)Holy Bible, New International Version®, NIV® Copyright ©1973, 1978, 1984, 2011 by Biblica, Inc.® Used by permission. All rights reserved worldwide.

The above quote is from here:

https://www.biblegateway.com/passage/?search=Ephesians+4:25-27&version=NIV

In my conversations with my son I’ve been referring to the scriptural principle without actually looking up the passage in context.  I’ve been focusing on the “be angry and sin not” version from the King James of my childhood, and did not realize the passage was followed closely by the “don’t let the sun go down on your wrath” passage.  That had always seemed a good practice in relationships, to not go to bed angry (especially with people you live with), but clearly the scripture provides no such relational limitation.

This is going to require me to rethink my approach to action going forward, in relation to the “special education case” that remains entirely unresolved currently.  I’ve been so upset with the trajectory of what happened that I haven’t yet been able to formulate a comprehensive course of action for moving forward toward some degree of resolution.  Also the intensity of the anger and disappointment has been such that calling or writing or meeting with people to discuss and strategize over this situation has needed to remain on the back burner for a while.  Now it appears, based on this scripture, that allowing the anger to unaddressed/unresolved could create a danger point in one’s soul.

Focusing on the injustice can seem an easy formula for getting caught up in bitterness in addition to disappointment and deep soulful hurts.  This is a hard place to be.  Moving forward in some type of action that can at least theoretically be effective for something as complex as our “case” is no simple straightforward task.  It requires reasoned regrouping and potentially some degree of research for other avenues of action.  As such it is unlikely to be something achieved before the sun goes down.  Can it be possible to retain the motivation that the extreme energy of anger provides without getting ensnared in the “devil’s foothold” of sustained rage?  How would God want us to address this?

These are matters that for me personally will require some prayer and contemplation.  If proceeding on a course of action, acting in “righteous anger”, it would seem counter productive to do so in a manner that manifestly violates scriptural teachings–especially if one espouses a Biblical Worldview, as I try to do, albeit imperfectly!

Perhaps there can be room for some degree of regrouping, such as happened with the prophet of old.  Following a tremendous victory he ran off and hid in fear and was so unable to care for his own needs that the Lord sent ministering angels to him for a period of time before he was sufficiently rested and refreshed to be able to continue on his way.

1 Kings 19: 3-9 New International Version (NIV)

Elijah was afraid[a] and ran for his life. When he came to Beersheba in Judah, he left his servant there, while he himself went a day’s journey into the wilderness. He came to a broom bush, sat down under it and prayed that he might die. “I have had enough, Lord,” he said. “Take my life; I am no better than my ancestors.” Then he lay down under the bush and fell asleep.

All at once an angel touched him and said, “Get up and eat.” He looked around, and there by his head was some bread baked over hot coals, and a jar of water. He ate and drank and then lay down again.

The angel of the Lord came back a second time and touched him and said, “Get up and eat, for the journey is too much for you.” So he got up and ate and drank. Strengthened by that food, he traveled forty days and forty nights until he reached Horeb, the mountain of God.There he went into a cave and spent the night.

Footnotes:

  1. 1 Kings 19:3 Or Elijah saw
New International Version (NIV)Holy Bible, New International Version®, NIV® Copyright ©1973, 1978, 1984, 2011 by Biblica, Inc.® Used by permission. All rights reserved worldwide.

The above passage is from this site:

https://www.biblegateway.com/passage/?search=1%20Kings+19&version=NIV

 

Although this depiction seems more in keeping with being overcome by depression and anxiety it could indirectly apply to anger, I guess, in that I’ve read descriptions of depression as “anger turned inward”.  God knows how we are made/wired and certainly understands our weaknesses.  If He has given us a standard to live by then He will also give us the ability to live by it, even if it is only by strength that comes through Him.

One part of the above passage that is a great comfort to me is that God acknowledged, via his angel, that “the journey is too much for you” and He directly supplied what was needed to enable Elijah to then be prepared to undertake that significant journey ahead.  Although the passage may be somewhat ambiguous it is at least possible that this divinely provided physical sustenance is what enabled him to travel 40 days & 40 nights, as in possibly without any other food during that time.  Regardless, God Himself, via his angel, provided just what Elijah needed in order to continue on his important journey.  Won’t He do no less for us if we truly seek Him?

Lord, please give us wisdom as to how to proceed with the issues surrounding our “case”. May our words and actions be pleasing to you and in accordance with your will.  Would you please make a way, where there seems to be no way, that we may see Josiah’s needs met and our many issues and concerns addressed.  Please lead us to the right people, information, scriptures, organizations, and actions to have these complex situations sorted out in a manner that Glorifies You and is also for Josiah’s (and our family’s) greatest good.  I ask these things in the Mighty, Matchless, & Glorious Name of Your Son, Jesus Christ.  Amen