The Last 5 years

The last five years was a whirlwind of change and transition mostly for our son.   Five years ago he went into a downward spiral and intense rage and instability that found no solution.  Around May of 2015 his behavior start to change.   First it was a dulling of personality then more self injurious behaviors.  Around Fall rage start to appear on a daily basis.  All the psychiatrist can do each time we visited him was to try new medication.  We tried a lot of meds but he failed to help so we went to another psychiatrist in town.  His primary physician tried benzodiazepines but none has worked although we tried it for a few months.  Up and down of medications made it confusing to know what works.  We frequented the ER a few times to see if he had a traumatic brain injury from his bike accident.  Negative.   There was a  particularly violent day which started from a hole in our wall and ended to a broken window next door.  Later that day we had to call the cops but by the time they got to our house he was quite medicated with Saphris.  It was the only medication he said he did not like but at the time the only one that can calm him down.  We called the cops at least 2 more occasions and ended up in the ER a couple more times.  It felt like war inside our home.

We realized that if we can’t control him then he has to go live elsewhere because there are four other people that are afraid every day, not knowing what to expect and what will break next.  We started looking at houses recommended by the Regional Center (VMRC) and almost got admitted to one at Turlock.  That only lasted a month and on to the next one in Patterson but that one felt too much like an institution and he didn’t like it.  That was December.   Around January of 2016 VMRC found us another home in Modesto.  We interviewed them and Scotty seem excited so he moved in February.  Around the same time we had to find another day program for him, one that can support his behavioral needs.  After only a couple of weeks he hurt someone at day program and was sent home.  So, no more day program for him.   They tried to do program at home by using their behaviorist and it just reminded him of the early Lovaas years, the stimuli-response therapy.   He hurt one of the staff there and they called the cops on him which they shouldn’t have because it is part of their job being a Level 4 home.  They should be equipped to handle difficult behaviors.  Now he received a citation and has to go to court.  He was also given a 30 day notice at that home.  Now we are faced with no place for him and a pending court case.  Also during this time, Scott was laid off at work.

We were in a panic because if a level 4 home cannot handle him then even more so for us.  They kept looking for another place and found one in Lathrop in May where he did well the first year and got him under control.  Another day program has to be found and it was CVTC in Stockton.  By 2017, we were done with our court case and he was doing well at this point.  The judge just told him to control himself and take his medication.  She gave him a thumbs up which he reciprocated.

These last 2 yrs was a flurry of appointments, change of doctors, change of medicines.  There were so many IPP’s I can’t even remember them anymore.  Attending them made me sick in my stomach because it was always to talk about him and his behaviors.

By 2018, he’s been doing well but not in the day program so we have to meet often regarding his behaviors in the community.  Unbeknownst to us that the manager of the home is starting to neglect her staff and is having issues with the state board.  Around this time Scotty will always say that he wants to move to Modesto.  Every time we see him, that was his request.  We thought that he was just being repetitive but there was a reason he wanted to leave the home.  Long story short is that he got to move in Modesto last year and it was the hand of God that did it.  That home in Lathrop was closed and the Regional Center was forced to grant him his request.  It was a relief to both of us because the manager was giving us a lot of grief and always confrontational towards me.  I’m so happy that chapter is over!

We couldn’t have survived if not for God and our prayers and trust to Him.  He alone sustained us and made us stronger on the other side of the storm.  If we ever thought that we were self-sufficient, this trial proved otherwise.  In the process of sanctification I learned dependence on Him alone.  My view of God has changed from taskmaster to gracious Father who actually loves me to the end.

The last 9 yrs – Part 1

Although I still continue to write in my journal, life happened and I forgot about this blog.  Ten years ago marked a season of my life that was full of uncertainties and burdens I could not carry on my own.  On March 31, 2010 my father passed away after being hospitalized for a month.  I was planning to fly back to visit but he died as I prepare to leave for SFO.  When I got there, plans were under way for his wake and funeral.  It was the last time I saw my relatives there, most of them have passed away since.  That began a series of adjustments for my Mom which included the sale of her home of 42 yrs.  It’s the home I grew up in.  We moved there when I was 1. After the sale of her home in 2012 she moved in with us permanently.  At the same time, we enrolled our son, Scotty, at Beyer high school because it was time for him to transition out of our home where we homeschooled him for several years.  He enjoyed his stay there and was thrilled to graduate with the Class of 2012.

During this time, my Mom had a difficult time adjusting here what with leaving all her friends, family and belongings behind.  She developed metastatic breast cancer in 2013 and we took care of her while she underwent surgery.  They gave her 5 yrs but she is still in remission up until now.

In Fall of 2013, we enrolled Angela at Big Valley Christian School to finish high school.  It wasn’t a easy decision for me but we knew that it was time for her to transition out after 10 yrs of home education.  The first couple of months were hard for her but she did well academically and found some friends there.

Around this time, the newspaper industry was doing worse than we thought it would.  This put more pressure on Scott to work many hours.  His work environment became stressful after some layoffs which put more of the work burden on him.

After Scotty graduated, he stayed home for a year but missed all his high school peers so I looked around for an appropriate day program for him and found Open Doors at McHenry Ave.  I wasn’t happy with it but it was sufficient at the time.  This is when he was riding his bike all over town including downtown Modesto.  He was 22 at this time and it was really hard to keep him home for his safety.  Thank God he was never hurt, but during this time he lost about 5 bikes due to theft.

I was weary and with the loss of community during this time I went through a season of gospel winter.  As circumstances began to change, my faith was tested.  And so I am reminded:

Isaiah 40:29

He gives power to the faint, and to him who has no might he increases strength.

 

Rests and Pauses

The year 2009 was a difficult year as far as my health goes.  I had so many challenges with fatigue and digestive issues which ended in a breakdown at the end of the year.   Taking on the burden of trying to teach my autistic son was too much to handle.  The more I tried the more he failed.  At the end, he had a regression that affected his speech and ability to communicate.  It wiped out over 5 yrs of work in speech and language.  It affected me so much that I couldn’t function well for 3 months trying to cope and understand what happened.  What I didn’t know is it was just a pause.  The world did not end but it sure felt like it because I have attached my worth to whether or not I can educate and cure him.  But God in His wisdom was just showing me something more precious- Faith and Contentment.  Regressions, physical afflictions are just rests.  Just like in music, they are just as important.  God teaches us so much if we listen, humbly submitting our will to His.

Here is my paraphrase of Habakkuk 3:17-19:

Though Scotty may not grow to what I expect. Nor there be no fruit of my labor, training and therapy. Though my strength fail and there isn’t any food on the table. Yet I will rejoice in the Lord, the God of my salvation. The Lord is my strength. He carries me like a Father to a child.

“Earthly sorrow has a mission in the sanctifying of life” -J.R. Miller

Adrenal Fatigue: Finding God in Weakness

For the last 6 months, I have struggled through fatigue affecting my mind and body.  There was an emptying of all strength, draining completely that even a small amount of work or excitement led to shortness of breath. Sleep was shallow and so there was no rest.  I thought that it couldn’t get any worse than this, then I contracted a virus that affected my digestion.  I couldn’t eat anything that wouldn’t cause abdominal cramps.  I felt weak and helpless. However, I knew God had a purpose in it and that morning when I prayed and asked Him – this is what I read:

“A bruised reed He will not break, and a smoldering wick He will not snuff out”  Matt.12-20

“Yet I am always with you” Psalm 73:23

“I the Lord have called you in righteousness and will hold your hand”  Isaiah 42:6

And from Spurgeon(Morning and Evening):

“The God of Providence limits and controls the manner, intensity, repetition and effects of all our sickness: each sleepless hour predestined, each relapse ordained, each depression of the spirit foreknown, each sanctifiying result eternally purposed.  Affliction is not a haphazard event.  He commits no errors in measuring out the ingredients which constitute the medicine of souls.”

Weakness through illness is humbling.  I don’t like going through it, but God in His wisdom teaches me so much through it.  It is not by might that I accomplish homeschooling but through His Spirit.  Actually it was all His strength.

A Brief Respite

Since the peak of aggression last month, Scotty’s behaviors have decreased and a month later, we find him back to his normal self, drawing appliances, catching bugs and asking questions. Sometimes I’m anxious still, thinking in the back of my mind that tomorrow maybe be a different day.

I thank God for the last few days of respite. It allowed me to rest, slow down and reflect on God’s many blessings. I thank all of you who continue to pray on our behalf. The discouragement and frustration that plagued my heart the past month has healed for now. I learned to drink all from the cup He gives us– the bitter and the sweet. I continue to learn how to love a child who doesn’t yet know how to love me back. I learn to be kind and patient when faced with anger. I realize also that it is a battle, a fight for joy. War is waged every moment that I am only seconds away from anger myself. Through grace, armed with prayer, we give thanks in order to have joy because it is only in His presence do we find it at all.

Dealing with aggression

If you ask most parents, aggression is the hardest thing to deal with as parents. It invokes “crisis” and disrupts family life and learning. For many years since Scotty was 3 years old autism took on many faces – tantrums, head banging, blood curling screams, scratching, biting and sleepless nights. After many years these behaviors became less and less as we use many kinds of intervention from behavior modification, neurodevelopment to biomedical approaches and chiropractic care. We had many successes amidst the failures and frustration dealing with this disorder. There are times when he seems like a typical child doing appropriate activities. But just when we have momentum, regression hits us hard that we lose a whole year of work finding ourselves back to fighting that same monster that takes over him.

As his eyes turn into rage I brace myself. My vision clouds, my heart sinks, and my whole body tenses up. All I can think of is how to redirect his rage with as little words as possible. I try to help him refocus, say short phrases like “look at me”, mention the consequences and wait and see if he can comprehend. Usually in the middle of a rage or meltdown, he will have only heightened emotions, rapid heart rate, shortness of breath and because he can’t handle all these feelings–he will try to physically hurt himself through whatever means he can find. I feel a variety of emotions: anger at this monster that continues to control him, sorrow as I see him hurt himself, and lately total surrender to God. In the past I felt hopeless resignation, but there is comfort in casting this burden to God who is in control of all things. During these meltdowns, I have prayed aloud as I held his trembling hand tightly and prayed very hard until tears start coming down my face. He calms down as he hears me pray about him, and all of a sudden in the middle of his rage, he notices my tears. About an hour later, he asks why I was crying. I tell him it is because I am sad to see him hurt himself.

So in the midst of darkness of mind, there is awareness, and in sorrow there is comfort. How blessed we are to be able to call on God anytime. And in total surrender and helplessness, we find Him as faithful as He has been in our joyful times. In complete weakness of spirit we find His grace and love.

A different language, a different world

On our recent trip to Mexico, one of the things we noticed was our difficulty understanding their language. Because we only know words, but not how they are put together, we can only understand about 2 words each sentence. For those who cannot speak English it was a struggle to communicate. It made me understand Scotty’s situation when it comes to language. He has been in speech therapy since he was 3 years old. For the last 12 yrs we all tried to teach him his language. It is only in the last 3 yrs of hard work with language processing that he have made great gains. But it wasn’t until now that I understood his personal struggle. When we speak fast, he cannot process it and therefore can not comprehend what we say to him. It is very much like being in a foreign country where you barely get a gist of what people are saying and you then learn to understand tone and body language.

Holland

This is a poem I was given in a support group. It was hard to read at the time, but now I fully understand it. It deals with the acceptance of our lot in life whether that be our children or our roles. We do not design or plan our lives, thankfully God does and we can rest our hope in Him.

Welcome to Holland

When you are going to have a baby, it’s like you’re planning a vacation to Italy, you’re all excited. You get a whole bunch of guidebooks and you learn phrases in Italian so you can get around. When it comes time, you pack your bags and head for the airport—for Italy.

Only when you land the stewardess says, “Welcome to Holland”.

You look at one another in disbelief and shock and say, “Holland? What are you talking about? I signed up for Italy!.

But they explain there’s been a change of plans and you’ve landed in Holland, where you must stay. “But I don’t know anything about Holland, I don’t want to stay!.

But you do stay. You go out and buy some new guidebooks. You learn some new phrases and you meet people you never knew existed. The important thing is that you are not in a filthy, plague infested slum, full of pestilence and famine. You are simply in a different place than you had planned. It’s slower paced than Italy, and less flashy than Italy, but after you’ve been there a little while and you have a chance to catch your breath, you begin to discover that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone else you know is busy coming and going from Italy. They’re all bragging about what a great time they had there, and for the rest of your life, you will say, “Yes, that’s where I was going. That’s what I had planned.”

The pain of that will never, ever go away.

You have to accept that pain because the loss of that dream, the loss of that plan, is a very, very significant loss. But if you spend your time mourning the fact that you didn’t get to Italy, you will never be free to enjoy the very special, very lovely things about Holland.

—Diane Crutcher

Count it all joy!

The life we choose is usually not the path our Heavenly Father would have for us. For instance, I would not choose to have a child with any disability because it would be a life full of struggles, a life far from perfection. When autism came to our lives through our son I remember reading 2 Cor. 1:4; I couldn’t comprehend how that can be. With heavy hearts, we went through the motions, survived the many tantrums and there was neither comfort nor rest. But I realize we didn’t get comfort because we didn’t pray. Yet He loved me then and used the experience to humble me. It took many years before I could give comfort to others. In fact it wasn’t until just last year. I joined a local Autism support group which consists of mothers with autistic children ages 2-8, and mine was the oldest at 14 years old. I now listen to their stories and I find encouragement from them as I hope they do from me. It is a wonderful group from different racial and religious backgrounds and yet linked by one thing–contending with autism. As I sit with these Moms with their heavy hearts and worn out bodies, it reminds me of a poem by Helen Steiner Rice, and understood God’s purpose.
Before You Can Dry Another’s Tears- You Too Must Weep

Let me live a life that’s free
From the things that draw me close to Thee
For how can I ever hope to heal
The wounds of others I do not feel

If my eyes are dry and I never weep,
How do I know when the hurt is deep
If my heart is cold and it never bleeds
How can I tell my brother’s needs
For when ears are deaf to the beggar’s plea
And we close our eyes and refuse to see
And we steel our hearts and harden our mind
And we count it a weakness whenever we’re kind,
We are no longer following the Father’s way
Or seeking His guidance from day to day….

..For only through tears can we recognize

The suffering that lies in another’s eyes.

Afflictions are medicine to our souls. It heals us of our selfishness and turns our gaze to Him who controls all things and searches all hearts. Because I’m a naturally anxious person, I am aversive to trials. I still don’t like them but I am grateful when they come because so many benefits come from them. I can think of a few:

1. Trials increase our faith and produces endurance

2. You learn to know God’s wisdom, providence and love.

3. You learn compassion: you are able to comfort another soul

4. It is a witness for the gospel, and to share with others God’s work in your life.

5. It connects you to people you otherwise would not associate with.

6. It humbles a proud heart and fosters total dependence on God.

7. It teaches you to pray fervently knowing that our expectation comes from Him alone.

8. It teaches you how to love a child who cannot repay you.

9. To rest in our merciful God and see His strength in weakness

10. It keeps you from being critical and judgmental of others once you walk in their shoes.
And so, I understand now why we must count it all joy!

A Change of Focus

Over the last four years of homeschooling, I have struggled to fight against the urge to teach as the schools do. For one thing it is the only method I’ve ever known and for another that was the way I was educated for 16 years. It is hard to break established habits. But as I look at mainstream education models more closely I see they are short-sighted — they only demand an accumulation of knowledge. Knowledge must involve the heart or else it “puffs up”. We train the mind only to prick the heart and point us to God. Instead of filling up more worksheets we converse more and we reflect and record our learning into our notebooks. We might still use the same books and learn the same subjects, but now they are just tools for discipleship rather than something we have to finish at year end. Although we test our children in their knowledge of math, grammar and spelling, we also test their character:

1. Do they finish what they start?

2. Do they persevere through a tough problem or give up?

3. When they are assigned work, do they obey without challenge, without delay, and without excuse?

4. Do they do their work orderly and with their best writing? (thereby showing good stewardship)

I also have to work on my attitude towards my children. Many times a day, my son exhibits many behaviors and most of them are rooted in selfishness (which is a sin issue) and rigidity (which stems from his autism). Most of the time I am patient but there are days where I get easily annoyed by his repetitive questions, rebellious attitude, and acting unkind towards his sister. My attitude is many times only inward and only results in frustration and anger. That anger then leads to escalation of his behaviors which results in missed opportunities for heart training.

So now, through God’s grace, I’m working on looking at each infraction as an opportunity for teaching and self-control. Though I may be tired, I will speak calmly and try to teach him a more godly behavior if only by example. I am finding that this is the best way to get through to his heart. It also answers one of the questions in my prayer; How do you teach an autistic child wisdom? One soft spoken word at a time through the work of the Holy Spirit.