Comfort in Suffering

I participated in a conversation at the Conservative Treehouse’s prayer request page, where a hurting mother was seeking prayer for a complex situation with her son.  See the link here for that conversation:

Prayer Requests – 10

Here is some of what I shared with her…so I hope this might bless you too–In Christ…

Dear PJ,

My heart truly goes out to you & I relate to most of what you’ve shared in so many ways. I do have a son on the Autism Spectrum & he (& his twin) were preemies & I was an older mother, in my 30’s, when they were born…

We also have ADHD in our family & 4/6 of us are “officially” diagnosed, though the unofficial 2 have many of the traits…I once read a book that postulated that ADHD/ADD & Autism Spectrum were on a continuum, the “same” condition but a matter of degree…

I have faced Many Challenges with my son, Josiah, who is “atypically autistic” (his original diagnosis, back around 2000, was PDD-NOS). We had Many Battles with special education on his behalf & were only partially successful.

When he was an infant we were told he would never walk nor talk & that he would never read nor write . The first time I took him in for psychological testing his purported “IQ” seemed so low that they could hardly give it a number, like in the 20’s– some years later he tested in the “low normal” range, but was believed to be higher by many who worked with him. For years every time I took him to a specialist I felt like I’d been kicked in the face &/or punched in the gut because of the magnitude of what we were facing, the overwhelming isolation of our circumstances (& my introspective personality), & even the despair…

I was incredibly overwhelmed so many times & still struggle significantly with likely depression, anxiety, near agoraphobia, & church “avoidance”…there is a lot of baggage that is still being wrestled with (or avoided!) in so many arenas…

OK, so In Spite of All of That God has been incredibly faithful to us. Josiah has come so far & significantly passed all expectations early providers ever imagined for him. He has an amazing tender heart for the Lord & is often more spiritually insightful than the rest of our family. His faith is incredibly pure & he was blessed to “see” God in a vision during his Liver Transplant surgery. He has prayed for me & I have been instantaneously “healed”.

He still struggles in many arenas. He will likely never drive. It is unlikely that he will ever be fully self-supporting, though there are systems in place that can facilitate whatever degree of “independence” we ultimately pursue. He desires a wife (& talks about his theoretical marriage more than his 3 siblings combined) but only the Lord knows if that desire will ever be fulfilled in this life…there is so much more that I could say.

Josiah graduated from High School with his class in 2015 in spite of much missed school post-transplant leading in to his Junior Year. He did get a Diploma, & Not a Certificate of Completion, but since he has a severe learning disability in math & hasn’t completed 3rd grade level math I have a hard time believing that his diploma carries the same weight as his twin brother’s.

Anyway I share all of that to offer hope, from our testimony’s side. God will never leave nor forsake you & He is not off-put by our doubts, fears, & challenges. I am often reminded of that passage where Jesus spoke with someone struggling with their faith/doubt who cried out “Lord I believe…Help, Thou, my unbelief!” He truly gets it–All of it, & that is reflected in so many passages of scripture, especially in the Psalms.

I’ll write a second reply with some tangibles that May provide some help, I hope.

I will try to keep you & your son in my (intermittent) prayers–I am not as consistent of a faithful prayer warrior as are so many who read & reply here. Josiah wanted me to tell you that he will keep you both in his prayers too (since he’s “King Josiah of Israel”–his autism speaking out there!)

May you find some encouragement in these beautiful scripture images:

not scripture but a biblical-based sentiment:

In Christ’s Love & Compassion

Hi again PJ,

This is an attempt at a more “practical” reply, so take each item with a grain of salt & I apologize in advance if this is too much or too overwhelming…

It’s really hard to know where to start after bathing your situation in prayer.

Having a trusted friend or confidant can help to share the load (this is an arena sorely lacking in my case so I just share it as “common sense” not from my experience).

Getting accurate info, including diagnoses, is crucial. How can anyone tackle a “problem” if they don’t even know what it is?

That immediately gets into dicey arenas because dealing with the “wrong” people can really increase the burden. My son has a long-time provider, Dr. Susan Youngs, who is a PMR Pediatrician (Physical Medicine & Rehabilitation) by training but runs a comprehensive special needs clinic in Metro Detroit. Their website is here:
https://doctors.beaumont.org/provider/Susan+Youngs/228159

I cannot speak highly enough of Dr. Youngs. She provides comprehensive, family centered care that deals (more than anyone else we’ve worked with over the years) with multiple facets of the child’s needs: medical, educational, therapeutic, family support, etc. If you are not able to see her, contacting her office for a referral to someone in your area may be a good start–you can use my name, Valerie Curren, for she’s worked with our family for more than 2 decades now. She is a strong Christian woman & her practice is uniquely suited to the complex issues faced by special needs families. Her practice is one of just 3 in the state of Michigan that is a state-level autism care center too.

My son was diagnosed on the Autism Spectrum by Richard Solomon, MD who was a behavioral pediatrician working at the University of Michigan hospital at that time. I believe he is now on the East Coast somewhere so I’ll see if I can find a link for him. I ran into his sister at U of M (an Ann Arbor librarian reading to children at the hospital) & she said Dr. Solomon had also written a book related to unusual languages of the autistic, in particular “movie quoting” (which is a language spoken fluently in our house–without any of us having read the book). He could be an asset in multiple ways. Here is a site affiliated with him, autism, & w/U of M:
http://www.aacenter.org/

A behavioral pediatrician, an autism specialist, a communications center, community mental health, special education, an autism advocacy organization, and a neuropsychologist for appropriate testing are all important tools for your journey.

I significantly educated myself on the special education front at Wrightslaw.com…here are a couple of links there that might help:

https://www.wrightslaw.com/info/add.index.htm

https://www.wrightslaw.com/info/autism.index.htm

Special Ed became a huge rabbit’s hole in our case & we did much battle for minimal services. Depending on where you live they could become great advocates for you & your son or anvil-weighted adversaries. Getting advocacy assistance (like from an autism association, the ARC, or “Protection & Advocacy”) may help (hopefully) a lot here. There are Many Links at Wrightslaw that you can follow depending how deep you want to go.

If you start with special education & your son has never been tested you can request testing to determine if he has a “disability”. After the school system has done their testing you can request an “independent educational evaluation”–at the school’s expense. I highly encourage you to go this route & to avail yourself of a competent Neuropsychologist. Josiah was tested numerous times by Dr. Seth Warschausky, also out of U of M. Here is a link to a site with his info:
https://www.uofmhealth.org/profile/430/seth-andrew-warschausky-phd

I cannot speak highly enough of Dr. Warschausky–he does an excellent job. His assessments were significantly more comprehensive than those done by the school system & he was better able to tease out more of the idiosyncrasies of my son’s challenges than were school-based testers. His testing compensated for many of my son’s sensory & attentional issues so that the test results were more reflective of the underlying skill set being examined than those “disabling” conditions that made testing him at all so challenging.

Depending on your son’s age there is the Early On Program, or Early Intervention. Those topics are addressed at length at wrightslaw.com.

Some people have found help in support groups. I knew some mom’s who both had Down’s Syndrome kids & they took advocacy training together & encouraged each other as they each advocated for their kids. Having someone come alongside might really make a difference–again something with which I lack direct experience.

Well, that’s a taste of some of the practical stuff to try and tackle. It can be a big twinkie but even those can be eaten one bite at a time…

I’ve written about many aspects of our journey with Josiah on several blogs so if any of our experiences might help you please consider stopping by…

I started “journaling” about Josiah’s situation when he was near simultaneously diagnosed with a brain tumor & liver masses/tumors at a site called carepages.com. That site ended its service last year so I archived that journey here (searching for autism & adhd, I haven’t done categorization yet there):
https://jazzmanjournal.wordpress.com/?s=autism
https://jazzmanjournal.wordpress.com/?s=adhd

I still blog about Josiah’s needs more directly here: https://www.caringbridge.org/visit/josiahcurren

My main blog deals with many topics but there is A Lot of material connected to Josiah (including Autism &/or ADHD), advocacy, overcoming/facing challenges, medical &/or special education battles, special needs parenting, etc.
https://specialconnections.wordpress.com/

I also have links to my son Josiah’s blogs in the right-hand sidebar at SpecialConnections.

I have many times found timely & encouraging articles here & at various author’s sites:
https://specialneedsparenting.net/

So, as usual, that is probably too much information, so I’m sorry for overloading you. If you have any questions that I might be able to specifically address please reply with them.

May the Lord continue to give you the grace, peace, strength, comfort, rest, hope, & joy you need to walk this complex path with & for your son…God Bless YOU

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s