Even though I walk through the ASD Valley of Grief…
… Your rod and Your staff, they comfort me.
… My cup overflows.
Surely goodness and loving-kindness will follow me all the days of my life,
And I will dwell in the house of the Lord forever. – From Psalms 23
1. I have emerged with a stronger foundation and fresh perspective upon rising from the three and a half year journey through the “ASD Valley of Grief”. I have now been on the other side now for about seven months and am enjoying the sunshine from this view! Grief being that I grieved the loss of what I thought my son should be, my own expectations, and the fact that he was born normal and had a diagnosis of encephalopathy at age two. Now, I am free to celebrate each new milestone, no matter when they may come, instead of seeing how far behind he is on that milestone!
2. In the ASD Grief Valley, I came to the point that after 20 years of ministry I had nothing to give, and stepped back to focus on family and myself. I realized this when I was to preach at the church and then asked my husband to tag team and then do half as I realized in that point, I did not have it to give. I ended up doing the historical and cultural background and that was the extent of what I could do. I knew I could not serve out of nothing at that time as the first of the 3.5 year valley took a toll on me physically with immense literal pain, mentally, emotionally, and spiritually. I have just this year stepped back into mentoring a group of 9 wonderful professional ladies and am very guarded on what to do beyond that, at least for this season until the end of this year. My focus from the past of solely local church ministry to a vast and growing population of mother’s with children on the spectrum now has my heart, mostly outside the church. I am writing a book about that valley in hopes of being an encouragement to other mothers and those with newly diagnosed children.
2. I have forgiven myself and medical professionals in a white coat. In one stage of grief, I was angry. I had to forgive myself for doing the best I could as I did not know he had a more at risk predisposition for adverse effects, nor did anyone else. I would like to see procedure changes for available testing for susceptibility for all children as a choice. During a portion of my grief, I carried disdain for those I thought would have known or been educated on the risks and felt there was some responsibility to lace there and wanted answers from the numerous professionals he has seen. I also fully accept a differing of opinion. To me, it really isn’t about “sides” but about having an unbiased foundation of research without conflicts of interest and full data disclosed to make an educated opinion.
3. I have come to live in the present moment, and cherish it.
4. I have met some very beautiful people I would have not otherwise met who have gone before me in this journey.
“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”
Elisabeth Kübler-Ross (1926-2004) said this:
5. I am honored to share at an Autism Conference I have attended the past three years, this being the fourth. This year I am presenting on “Where is God in ASD” this week and pray to encourage others in the Scripture and what God has put on my heart.
6. I am receiving so much refreshment from the Leadership Investment Intensive and have a mentor this year who is a life coach and author. I can see God’s hand in this process and have become particularly fond of Tozer in this time.
7. Most of all, this year, I have entered a new season in my spiritual walk. Having known the Lord since age 4, this new season on the other side of the Valley has brought an acute awareness to acknowledge God to infuse every area of my life and to yearn for His Presence, his true rest. It is truly been soul quenching just to sit in His Presence, and well, just sit and in His quiet Presence.
While preparing for the Autism One Message, a new epiphany of Scripture was realized that has ministered to me deeply:
2Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest (quiet, recreation, refresh). Take my yoke (metaphorically) upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls (mind, feelings). For my yoke is easy to bear, and the burden I give you is light.”
(This relates to the work He is doing in my life on “White Space”. There is an earlier blog on White Space).
Did you notice the Greek meaning of the word rest?
quiet, recreation, refreshment
Here, the quiet joy is found on this journey. Much like the verse of loosing one’s life, they will find it (automatically) in literal interpretation from the original language.
Yes, there is still an enormous paperwork task for grants for therapies insurance doesn’t pay, coordinating and administering his prescriptions twice a day, coordinating therapies (OT, music, ABA, and hopefully speech again soon with a new grant) and attendant care along with the speech, occupational therapy, and physical therapy he receives at school and IEP meetings. I, like many other mothers, have put this as a vital need and set aside our own desires for a time out of necessity.
If you are on this same journey, I pray the He meets you where you are. If your not, take a moment to pray for the families of this growing epidemic as it knows no demographics and it is difficult to get services and therapies needed, and especially learn to art of rest and recreation.
He makes me lie down in green pastures;
He leads me beside quiet waters.
He restores my soul;
He guides me in the paths of righteousness
For His name’s sake. – From Psalms 23