Bathrooms, Rootbeer, Legos and Anticipation...

His journey continues.
I am amazed with how fragile the body is and yet how strong the spirit can be and how God can give more than an ounce of strength for a little guy to maintain as best he can.

I just wanted to share two quotes he made this past weekend that caused my heart to smile and a video he made.(he took 56 pics to make the movie) Over the years we have found that his computer and the internet is a way for him to calm, focus and recollect himself. Even though the Z key is gone....his little THINK PAD has been so resilient! Thank you Lord for that blessing.

During our small Vacation time with a wonderful family, the Simms', Faith, Joshua, Ben and I got up early to go play putt putt during the morning hours where there would be NO CROWD! As I came out of the bathroom he turned, swung his arms my way, pointed and said, "What a surprise, you were in the bathroom". That caused us to chuckle.

Then, as we were getting our putt putt gear, he asked for a drink. When asked what he would like he told the lady, "A root beer please, not beer, ROOT BEER, I'm just a kid."

Love it! It's the little things that are SO HUGE!

Today's acronym of PANDAS: Patiently Anticipating New Day Adventures...Seriously.

He meets HIM in a yard filled with dandelions…

Can I admit that I am tired? Is that allowed? No matter, I am going to admit it anyway.

We praise God for 2 days where Joshua was able to rest in his own bed and have intense laughter, where the paronoid feelings that someone wants to hurt him was decreased. It was a very nice vacation from those symptoms for him.

All though the symptoms are ever present, Joshua amazes me. I cannot put to words, but just know in my mommy heart all that he has accomplished so far and all that he has walked through and in the midst of all of it, he still goes to the ONE who died for him to find comfort. Not a day passes that he does not ask me to pray over his thoughts and ask Jesus to replace them.

Yesterday I left work early because he was struggling with a PANDAS moment, and as I think of this journey, I want to share a section I wrote in 2009.

No matter what, remember this...God is good!

ONE FINAL THOUGHT
He meets HIM in a yard filled with dandelions…

Section taken from: Life Inside the Box of a Jigsaw Puzzle
Finding God’s Grace, Strength, Hope and Understanding inside the Spectrum of Autism.

By Angel S. Thompson
Copyright Year: © 2009
Published by Unleashing Potential
All Rights Reserved.

My son has this unique relationship with God. I could sit here and say that I am envious and that I long for that, and yet the truth is…I can have that...I do have that…one that is individual and totally and fully “ours”. (Mine and God's)

The other day as I drove around on the lawn mower cutting our "field", I could not help but to be
captivated by my son who stood in the grass, dandelion “fuzz” flying around him, arms stretched
upward with his face towards the sky. He would stand still and then spin and then stop and sway as if hearing some sweet sound of music only known to him. Later he asked to ride with me and as he nestled his head on my shoulder I asked what he was doing with his arms up in the yard and he said, “Talking to God and praising Jesus.” When asked what they talked about he said “I cannot tell you, because that was God and I talking.” He had found his “prayer closet” and went there to talk with Jesus. Uninhibited by what was happening around him, he was able to “sift” through it and find solace with God.

To understand how profound that is….individuals that have an Autism Spectrum Disorder have a hard time “sifting” through all the noises and sensory things that invade our lives daily. As you are reading this there are sounds happening around you and yet you are able to sit and concentrate to comprehend what is on your screen. For people like my son, it is like the GRAND FINALE at the 4th of July happening inside their head all the time and they have to “sift” through it…so…you can understand why I sat in awe as God and Joshua met in that yard and he and Jesus talked and sang together. It was so intimate that Joshua did not want
to share the details, only that they "met"…because it was HIS TIME with HIS KING.

My son grasps the meaning of Ephesians 3:19, 20. He knows the power Jesus has in his life and he soaks up the fullness that he has been given because he belongs to HIM.

Do you know that you can know that fullness….that power….if you are HIS…it has been promised to you because HIS SPIRIT lives within you! I challenge you today to read Ephesians 3:14-21. Meditate on it, soak it in….then go find your “yard”
and meet Him there…..He’s waiting!

photo from our yard May 2009

grip...freedom...hope

grip 1 : to seize or hold firmly (What PANDAS D/O has on our son)

free·dom b : liberation from slavery or restraint or from the power of another (What we petition to Christ for daily regarding the grip of PANDAS D/O on our son)

hope Isaiah 40:31 "but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." (What we cling to.)

HOPEFUL Dot of Light!

I shared yesterday on FACEBOOK that: I see a dot of light down the tunnel of PANDAS D/O.

COMMENTS from 3 of my dear friends:

Chelsea Stover
I pray that dot keeps increasing until you and Joshua are blinded by deliverance, my friend!

Trina Cypret Nelson
Praise God there is a small dot! I'm totally agreeing with Chelsea on that one!!!! Light that dispels the darkness & brings complete healing.

Daena LeFavour
God is gracious. I love those moments of hope and light He gives us!!

So, I just had to share this regarding that dot of light....for several months Joshua has been afraid to sleep alone or be away from me (PANDAS D/O symptom). So he has slept on my side of the bed with me in my recliner beside him. Guess what. He said last night, I am going to sleep in my bed....so, with Charlie at his feet...HE SLEPT ALL NIGHT IN HIS OWN BED!

I know his PANDAS D/O is still here. His neurologist shared that we should begin to see gradual progression over the next 2 weeks after his treatments. My heart is just overjoyed with this little dot of light, and I wanted to share it with you.

He just asked me for his sandals because, "Charlie told me he wants to play." They are outside playing. Usually at this time he is on his computer all day...fixated. Another dot of light. The tunnel is long, but those dots are so HOPEFUL! Thank you Lord for these moments.

HOPE through the waves!

I am having a nostalgic moment as I sit with Joshua today.
Watching archived videos I ran across this one when Joshua was 4. He had been dx with Autism 2 years prior. We were told that he may never talk.

As I see how this additional PANDAS D/O has gripped his life, and the journey he has ahead of him coupled with his Autism...this video just reminds me of what God has done and will continue to do in his life.

Father, may Your waters wash over him.

PANDAS D/O Word Action of the day: perseveration

The word meaning of our PANDAS D/O Journey today: per·sev·er·a·tion (pər-sĕvˌə-rāˈshən) a. Uncontrollable repetition of a particular response, such as a word, phrase, or gesture, despite the absence or cessation of a stimulus, usually caused by brain injury or other organic disorder. b. The tendency to continue or repeat an act or activity after the cessation of the original stimulus.

So, that is our day today. As I sit here with our son who had just spent an hour crying and screaming because his paper model of a Nintendo DS was not “quite right”, God has been bringing my mind back to HIS words in Scripture and then HE reminds me of what HE led me to write in 2006 regarding a question posed to me by a friend regarding Joshua’s Autism. So, I share it with you….

Regarding his steroid treatments. I have no idea if they are working. I am hoping we will see results, but if not, we will keep moving forward. I have been blessed that my employer has allowed me to take a week of FMLA to be home with Joshua as he has not been able to finish the school year at his school. He is a trooper.


“HE STORES MY TEARS…”
Section taken from:

The True Intimacy Of Becoming A Water Walker
By: Angel S. Thompson
Copyright Year: © 2006
Published by Unleashing Potential Ministries

All Rights Reserved.

It was a Saturday morning as I began to prepare for the day’s events at our ladies retreat when my friend, lying in her bed, looked at me and asked me quietly and gently, “Have you grieved about Joshua’s autism?” Being a pastor’s wife and the director of an autism group I stood there and thought for a moment, realizing that I do not “share” my grief openly…if I have grieved much at all. As I began to share with her my feelings and fears my heart began to weep as it displayed itself in tears. I shared that in light of everything I must remain strong, yet there are days that I sit and cry. I weep over the fact that the dreams I once had for Joshua were blown away like dust when we heard the word, AUTISM. I weep over the fear of what would happen to Joshua if something should happen to my husband and me. Would anyone love Joshua like we do, or would they not take the time to understand him and just send him away to disappear into his own world? I shared that I often feel that I have failed as a mommy as I sit weeping on the floor as my son is having a meltdown beside me.

I believe we all grieve in our own way. I believe my “grieving” is always before me when I see faces, stares and hear whispers. When family members try to blame us as parents and don’t support us and when friends disappear since our son’s diagnosis. It’s true; my heart grieves a little more each time for my son; the precious one who reaches out to love and be loved. This selfless boy who would and has given up his last raisin because his little sister asked if she could have one, or has seen his sister napping and covered her with a blanket. This little boy who, in excitement, tosses an object and it accidentally hits his sister and he quickly says, “Sorry sissy.” Then, just today, for the first time, wanting to make sure his sister was behind him said, “Come on, sissy, come on”, as we walked out the door.

When I sit and ponder “tears” and “grieving” I am reminded of several passages in scripture. “Those who sow in tears will reap with songs of joy.” Psalm 126:5

Another famous passage that causes me to stop and bask in the love my Lord has for me is found in Psalm 56:8. “Record my lament; list my tears on your scroll—are they not in your record?” In the KJV it says that he puts “my tears into thy bottle”. God knows each time I have wept. My grieving has not gone unnoticed and neither has your weeping.

There are so many other passages that touch on “tears”, Ecclesiastes 4, Luke 7, 2 Timothy 1, Revelation 7 and 21, 2 Kings 20:5.

Yet, there is one that always causes me to pause. Jesus’ dear friend was sick and dying. By the time Jesus arrived, Lazarus had died. One thing I noticed in this passage was something interesting. I would have expected Martha to be the voice in grieving while Mary sat weeping silently, yet in John 11:32, Mary cries out to Jesus. Her grief no longer contained and I can only imagine the emotions escaping as she fell to the feet of Jesus, “Lord, if you had been here, my brother would not have died.” (Do you remember the passage in Psalm 126?) Here was Mary at His feet weeping. He looks around and sees the others weeping and He is moved in spirit….and he weeps. Whether you grieve silently or openly, our Lord weeps with you, grieves with you in your pain, in your loss, in your struggles, in the midst of your uncertainty, in your….everything.

To answer my dear friend’s question, I guess I have and do grieve about my son’s Autism. Yet I don’t let it end there for I know with all the sowing in tears I have already reaped mounds of joy as I see what God has done in our son’s life and anticipate what He will do in the future.

As you sit this week and possibly reflect on the uncertainty in your own life I pray you remember this: You have a Lord who captures every tear, not one goes unnoticed and he is moved by your weeping. May you also know that one day we have the promise that all tears will be gone, all grief will end. (Revelation 7 & 21) Allow yourself to weep, and allow yourself to look beyond and reap the joy He has set before you as you walk in the midst of uncertainty.

Intimate moment with Christ
I remember when my counselor in college gave me permission to cry. What a freeing moment that was for me. If you have never felt that freedom, I give you the freedom and permission to cry, to weep and allow your God to capture your tears.