Rescue Me

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My heart is as the weather- dreary and overcast with doubts of my motherly worth. It has been 3 long days, not particularly hard, but very long. Scott travels to Denver regularly, and it always seems as though one or all of us are sick with something when he leaves. This time ear infections, asthma, and the common cold wrapped their claws around us and haven’t loosened their grip yet. 

As Samuel progresses with gross motor skills, he has become more reclusive in some ways. I feel as if I have failed him these 3 days. He walks around the house shaking an ice cream wrapper that he has taken a liking to. He walks for extended, drawn-out periods, and I seem frozen, sitting..observing him. He never comes to me while he is consumed in “his play.”  He never shows me this wrapper, as if to say, “Hear this funny noise, Mama!” 
He seems content, so I allow him to stay inside himself.  I don’t encourage him to play hand over hand. I don’t sit on the floor with him and work on waving or bye bye. I don’t try any more sign language. I just let him be the Samuel that he is. I am tired.  When he is hungry, I feed him. When he is wet or dirty, I bathe and change him. When he is crying for seemingly no reason, I rock him. All the while, I talk. I talk to him as if he knows exactly what I am saying- as if, at any moment, his eyes will brighten with understanding. I still have hope, but I am tired. Grief, I suppose. Self-doubt, possibly.  Denial, partially. Wishing it weren’t so hard, absolutely. 
I make appointments and take care of an off-exchange insurance that covers autism therapy. I make sure Maggie is prepared for school. I hug her tightly when she comes home, thankful for the easiness that is her. Grateful for someone to talk to you. Loving her. 
We settle in for dinner, baths, and bed each of these nights, and we start again each morning. We do this all 3 days, waiting on Scott to return. I never knew that I needed rescuing. I never knew, until I knew autism. 

Hope…

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Today was such a good day. Simply grand. Samuel’s baby dedication was today, and I don’t want even a smidgen of my memory to fade when thinking back on how sweet it was. So, I must blog! 

My parents came to Katy for the weekend, and it was wonderful to have them here with us. Our pastor was precious to our family, and he lead the congregation in singing Jesus Loves Me to Samuel. But, he asked us all to sing Jesus Loves YOU, instead. I was touched, as this is how I have always sang it to my children. 
It was also a special day for Maggie! When I was pregnant with Sam, Maggie curled beside me in our bed, and asked Jesus into her heart. She was ready. She knew that she wanted Him to lead her life. It was pure, and moving. As her parent, it has been, thus far, the absolute best feeling to know that she is walking in His truth. I know that nothing will ever pluck her from His hands, and there is a great peace in that. She has always been extremely shy, and our pastor just encouraged us to let her make her public profession when she was ready. So, today, during the baby dedication, she gave us “permission,” to announce her decision. 

Our church family was supportive and prayed with us, committing to help raise our children in God’s word. 
Her baptism will come, eventually. She told us to “hold off on the water!” 
Baby steps, I suppose. 

The service was beautiful. The music was filled with Baptist hymns, and the sermon was inspiring. 
We had lunch together before my mama and daddy left for Louisiana.
The definition of hope is: the feeling that what is wanted can be had or that events will turn out for the best. 
In Psalm 39, the Bible tells us that our only hope is in Him. 
This has been a day of blessings and hope. 
HOPE– we needed that. 

Counting

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Tonight, just as I grew up hearing from my Granny Jane and singing from the Baptist  hymnal, I will count my blessings. 

Although there are times when this broken world seems cold, bitter, and unsympathetic, there is hope in our fellow man. I think being inundated with all that is wrong with our society, we stop looking for the right, the good, the kindness in others. I have been so very fortunate to have been blessed my many during this adjustment period in my family’s lives. So, I am counting my blessings, naming them one by one. I will count my blessings to show what God has done. 
1. PRAYER. There is surely power in it, and it is the reason I have seen God’s love through these trying times. I have had so many messages, texts, calls, hugs, and conversations that begin and end with the words I am praying for Samuel and your family. That is the greatest gift that could be given to a fellow believer. It means that you have pled to God on our behalf, and I will treasure and covet every word spoken. Thank you, Lord. 

2. FRIENDSHIP.  We have had friends schedule a maid to help us get our house straightened, so that is one less task that needs to be done. That is amazing and selfless! How precious to us. 
We have had a friend offer to do what she does beautifully- take a family portrait for the holiday season. I would not have even thought to do this, as things are so hectic at the moment. I cannot wait to have an updated picture! Thoughtful and so giving of her time, as she has much in her life right now that keeps her busy. 
I have an awesome cousin who sent us a gift card for supplies needed for Sam’s sensory room. We have had donated supplies, as well! How thoughtful. How humbling it is to accept these things from others. Thank you, Jesus. 
3. FOOD AND FRIENDSHIP.  I just love how 2 of my favorite things seem to go hand in hand in times of need. Lol! 
My family has had meals made for us by our church family, and they always seem to be on the most perfectly imperfect days, when things have been hard or stressful, or when appointments have gone long, and especially when the kids have been sick. Coincidence? I think not!  God knows what we need when we need it. Thank you. 

4. EMOTIONAL SUPPORT. 
I have been connected to many mothers who also have children with ASD.  They have been sent to me in unusual ways. One sweet lady, who is a pastor’s wife in Keller, TX,  knows another lady from my hometown in Louisiana who attends church with my parents. Not only does this pastor’s wife know my parents’ friends, but my buddy from high school is the minister of music at her church! Small world. But, all because of one prayer request sent out by my daddy to his church, I was able to talk to this lovely mother who is dealing with a similar situation. God’s highways always connect us to who we need, no matter the distance. 
My parents both taught another fantastic couple, who have a son with autism. I am amazed at their strength and her willingness to answer my questions and her prayers for our son. 
One of my sister’s closest friends has a grown child with autism. She just happens to call and check on us when I am crying because Samuel hates to walk on the playground and won’t interact with others. Her words of wisdom through experience are invaluable to me. 
5. UNDERSTANDING. I was on the phone at midnight with the nurse line about Samuel’s ear problem, when the on call nurse, whom I do not know, begins to ask me difficult questions that seem to always be answered with, “I don’t know. He is non verbal. I don’t know. That is how he stims. I don’t know. He can’t communicate. I don’t know. He is autistic.”  Tears ensued. Big, fat, ugly tears. Then, she says these words, “Don’t worry; we will figure it all out. I have a 26 year old son with autism. Let’s talk.” 
I could not believe God’s perfect timing. After 45 minutes of sharing with each other, the ear problem was solved, and my heart felt soothed. Thank you, God for a sweet nurse named Gayle. 
6. MEDICAL PROFESSIONALS. Need I say more? Talented, compassionate, smart, intuitive, and trustworthy. That is 
Samuel’s team. From the receptionists to the nurses to the doctors themselves, amen and amen. 
7. THERAPY. Early Intervention, PT, and OT. All of ECI and the hard working therapists and supervisors who care about my son. Thank you, Father. 
8. MY PARENTS.  If I wrote all night, anyone reading would be bored to tears, as the blessings of prayers, financial support, midnight calls, and willing shoulders to help carry our burdens and worries would not scratch the surface of their unwaivering steadfastness to Samuel’s and our needs. Thank you, Jehovah.
Because of God, I can see Him taking care of us. All I had to do was turn my view finder around to experience an entirely new perspective. Blessings are everywhere. Just look- you’ll see. 
Part 2 to come. 

Drink

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I opened my Blogger app feeling the need to write. Usually, I write as I lie down for the night, when things are quiet. Tonight is no different, except that my mind is twirling with all the things I have botched or utterly failed at this week. I lost a packet of paperwork from Sam’s neurologist. I have to take it with me Tuesday to his geneticist appointment. I failed at getting the laundry finished, the cabinets straightened, making a doctor’s appointment, and the list goes on for miles it seems. I feel as though my children are never well these days, and I am not doing enough for either of them. I can’t concentrate on conversations Scott and I are having, as my thoughts wander. My brain cries out: Get it together. Stay on top of things. Gain control. Yet, my body is screaming: Rest! You are tired. Sit! 
I know that Satan’s hands are never idle. They are busy trying desperately to weave doubts, insecurities, and misery into my head and heart. I know that he is not the filler of my soul. No, that is my Savior’s place. I feel dry- parched for His comfort and peace. I love the song As the Deer.  The lyrics flood over me and help me to claim my redeemer. 
My soul longs for thee. He will quench my thirst, turn doubt into hope, hold me tightly until security consumes me, and cast away frustration until I see joy. I just have to LET him. Why is it that we hold on until we are completely drained before deciding to lay it at the cross?  I am so imperfect, why would I attempt to self-soothe and gain control over my life, when the One who gave me life cries for me to let Him take the lead?
So, tonight I will drink from his word until my thirst is quenched.  And I will sing:

Tug

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I feel pulled. I feel pulled much like the rope in tug of war. The only difference is that there is no one on either side stretching me to my limit. No external force has yanked or jerked me toward the inevitable mudpit in the middle. I, alone, have pulled myself taut. 
I have put so much pressure on myself to be all things to all people in my home, that I am so tightly wound. The tension is painful. 
I have a messy house that needs to be cleaned before the maid can even clean it. I am struggling with Maggie’s needs, and I feel like maybe some family therapy to help her deal with all of the changes would be beneficial. 
Scott is precious. He helps me in so many ways when he isn’t at work providing for us, too. But, by day’s end, I don’t have the energy to be his rock like he is for me.  He just works so hard. He is honest and good and does so much that he doesn’t have the time to learn about Samuel’s needs right now. So, I do all of the paperwork, appointments, therapy, insurance, filing, and scheduling. Usually, by the time the kids are in bed, I am too exhausted to go through with him what I have learned, discovered, or read. 
I have been reading an awesome book. It  was published many years ago, but it is stil prevalent today for families who are dealing with these types of situations. 
There is a chapter titled Marital Stress that gives true accounts of what couples feel like and encounter during stressful times. It talks about becoming emotional and informational partners. So, Scott and I are really trying to find a balance. We teeter and fall, but so far we are picking ourselves back up each time we stumble with our emotions and stress. One family said that their marriage stayed spiritually and emotionally sound because they scheduled time together weekly. 
Well, weekly just doesn’t happen for us, but Scott and I got to a point a couple of weeks ago where we were just at our wit’s end. So, we decided that we needed a day as a couple. To talk. To hold hands at lunch. To do one of our favorite date things to do- browse bookstores. I love that we have that in common. 
Today was the big day! We dropped Maggie at school, then took Samuel to Mother’s Day Out. As we were leaving the parking lot, we high fived and didn’t feel guilty at all! 
I could still feel the lingering heat from that high five when Maggie’s school called to tell us she was sick. She has been through an awful month. 
I layed my head on the steering wheel and could not laugh nor cry. I went into a place of “nothingness.”  

Scott looked so disheartened. He said, “We needed this day!” 

I completely understood his feelings. 
We felt sad that Maggie was sick, but we have no time to be a married couple. You just can’t get any old babysitter for an autistic child. The autism and the amount of time we spend soothing, comforting, preventing is never-ending. 
I think I am in this place of nothingness, still. I am praying that my heart feels lighter in the morning, as God renews our spirits while we rest. I thank God for this day, even if it isn’t what we had planned. I pray for wisdom as I traverse this new normal. And, for goodness sakes, I pray that tomorrow I am NOT the rope.


One more time..

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We have had a week! Maggie is having bronchial spasms from her asthma. She had a hospital visit Wednesday, and they were able to get it under control. Samuel had tubes put in his ears Thursday, and then Friday Maggie went back to the doctor with an awful body rash and a sinus infection. Halloween ended up being dressing for pictures, handing out a  little candy, and painting pumpkins. Maggie fell asleep on the couch. Sam fell asleep on Scott. And, Scott and I watched a creepy movie and fell asleep. 
Today, Maggie has been so weepy. I just feel awful for her, as she has been dealing with all of this for nearly a month. I even offered to buy her a toy. She just cried and turned down the offer. Hopefully, the antibiotic will work its magic for her. 
Samuel had a tough time at Mother’s Day Out. He threw a rice shaker (throwing is one of his repetitive behaviors) and hit a little girl on the cheek with it. I was with him at the time. The girl cried, and I felt terrible for her. Samuel just stared off into the distance. He doesn’t throw because he is angry or frustrated. He just throws because that is the way he stims and can enjoy playing. Everyone was really nice about it, but that is just one example of the small, yet big, things we confront daily. It seems that every day there are a million “small” things that, by evening, amount to the size of a mountain that I am just too tired to climb. He is not eating much.  I understand that all nearly 2 year olds experience some of this, but if he has one change in routine, then all bets are off on the eating front.  Samuel does seem to be making eye contact more often, and this weekend he appears to be very content, without many head banging or stimming episodes. That is a relief. He definitely is more at ease when all of us are in one place at the same time. It seems to comfort him. 
The below link is amazing. It really gives a very clear view of how Sam is and what Sam does and does not do. 



I have mentioned stimming a few times, but I realize many may not know what it is exactly. 
Stimming: 
Stereotypy or self-stimulatory behavior refers to repetitive body movements or repetitive movement of objects. These movements are used solely to stimulate one’s own senses. This behavior is common in many individuals with developmental disabilities; it appears to be most common in children and adults with autism. It is important to note that not all self-injurious behaviors are considered to be self- stimulatory. Self-injurious behavior can also be communicative. 


Some of Samuel’s stimming behaviors include scratching, biting his hands, pinching himself, patting himself in the face, head banging, pacing, squealing, grunting, and repetitive throwing of any object. 
It is hard to believe that these things help to calm him in certain situations or even stimulate him at other times.  One of his favorite stimming behaviors is rubbing his head gently on objects to get a deeper feeling that he cannot get through his fingertips. 
We are discovering some ways to help him, and we have created a sensory room that calms him when his stimming escalates. That’s a topic for another blog. 

On a personal note, I feel proud of how hard I am advocating for our little boy. I am trying to acknowledge something good about me each day, as depression creeps heavily, and this helps me to stay positive. There are still moments, hours, days that I cry, but I am looking forward to the day when I open my eyes in the morning and just feel confident in what we are doing to help our son. And every, single day that I am blessed with the breath of life, God gives me His strength to try just one more time. And, when a new day dawns, I try again..just one more time.  

Truly he is my rock and my salvation; he is my fortress, I will not be shaken.  Psalm 62:6


Pictures from Halloween! 




Next..

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This particular blog has been mapping its escape route the whole day long.  Today was awful. There is no way to sugar-coat it, and I don’t think I would be very honest with myself or others if I said any differently.  Since Samuel’s diagnosis, I have often had extreme guilt over the sadness I have felt. I tell myself over and over again that “it” could be so much worse. But, I have also come to realize that the definition of awful in my heart and home and the definition of awful in others’ lives can be very different. My “awful” is real to me, and I am slowly beginning to grasp that it is OK!  It is ok that it hurts. It is ok that I am upset and feel out of control at times when I don’t know what to do when the tantrums are many and the head banging is frightening. It is ok to classify my day as awful- no guilt attached. God made us in His image and created us with senses and feelings so that we can cry out to Him to comfort us through all of our “awfuls.”

I have prayed that when I blog that I do it as honestly and authentically as I can, so that if even one person struggling with similar life circumstances reads, they can see a true picture of my thoughts, emotions, feelings in relation to many things- autism, family updates, random happenings, just whatever my heart tells my hands to write. 
A few blogs ago, I couldn’t bring myself to explain what would be next for Sam, but a sweet friend of my mom’s reminded me that educating others through our story is something I should do. So, what’s next for Sam:
After the diagnosis, I knew I had to educate myself on the vernacular and information within the autism diagnosis. If I didn’t do this, I wouldn’t be able help  Samuel. I’ve been reading everything. I have organized Samuel’s medical history into a binder, with doctors’ orders, diagnoses, tests to be run, therapy centers to call, insurances to look into.   I have learned about every type of therapy available. His doctors discussed which would be the most suitable for Samuel. 
I have learned that when you receive a diagnosis like this, that you must wear many hats- insurance expertise, psychology student, file clerk, and the list goes on. The old saying, ” knowledge is power,” is very true. But, for me, knowledge is soothing. It comforts me. It encourages my worries and anxiety to settle, because I know more today than I did yesterday and the day before that. And, that allows me to have a sort of certainty that I am, indeed, helping my son. 
Samuel will have a 24 hour EEG done to make sure he isn’t having any type of subclinical seizures. He is seeing a geneticist to check for metabolic, chromosomal, and muscular disorders. He will add occupational therapy to his PT and early intervention. And, then in January, he will start an all day ABA (Applied Behavior Analysis) intensive program. The link below explains the ABA process and research behind it. In fact, most other autism therapies are derivatives of ABA.
As tests come back and more therapy is added, we will know more and I will be sure to update. 
Books that I’ve read/continue to use: 

Mosaic

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I have seen God in many places and instances. I have seen Him through other’s actions and kindness. I have heard Him speak to me on the delivery table when I birthed my first child. I have listened to Him as He gently whispers a conviction into my heart that I must see to. I have known His mercy in times of trouble and sorrow. I have been forgiven by Him when I have so utterly failed Him that redemption seemed impossible. 
But, what amazes me most is when I can see His plan and provisions unfold before me, knowing all along that I would need Him so much during this season of my life. 
Since Samuel’s diagnosis, He has astonished me at the blessings He has put in others’ hearts to lend to us in our time of need. He has woven a beautiful mosaic that has come together so undeniably, just to bring Scott, Maggie, Samuel, and me comfort. 
It started with Christian. Christian, who was sent to me by God, I am certain, is a precious boy with autism. He entered my 6th grade classroom in 2010, and at the same time he made his way into my heart. Single-handedly this precious gift of a child changed my classroom dynamic, in all ways good. I had 2 little boys who were 6th grade teasers, and Christian even touched their lives. They became his walkers to class, his lunch room buddies, his lender of supplies, and his friends. They redirected his behavior and helped him calm when his stimming was unbearable. These children are what books are written about. They are my heroes. 
I ended up keeping in touch with Christian and his mother throughout the years. He is now nearly 16 years old, and I love his family. 
See, God knew HIS plan for my life. He was slowly preparing my heart from caring about my special needs children to loving them unconditionally. They became the teacher, and I, the student. I cannot fully express what that year as his teacher meant to me. The first person, outside of family, I called when we received Samuel’s diagnosis was Christian’s mother. She has been such a wonderful comfort and listener. 
Then, I began to pour over a tool kit called “The First 100 Days After Diagnosis: A Parent’s Guide.”  
As I did this, I was grieving. I was mourning the plans that I had made for Samuel, making all the same memories with him as a toddler that I had made with Maggie. Each section of the kit revealed more and more of Samuel to me, and the tears could not be held back. I tried. They just poured like rain into a river of sorrow. 
It was amazing, though, that throughout that day I would receive a phone call, text, or email from a family member or friend offering words of encouragement, scripture, a shoulder. 
I have had sweet friends offer to send a maid to my house, just to give me some sanity. I have had high school classmates, whom I have not seen in nearly 20 years, message and call me with offers of help in their areas of expertise. My Granny and my mother are both reading the tool kit to learn more about Samuel, too.  
I took Samuel to the park, hoping, praying that this would be the time that he would want to walk and climb and slide. Instead, we sat for 30 minutes, and once he was acclimated to his surroundings, he got off my lap only to lay his head and gently bang it on the rubber mat that lay under the play set. He wanted to deeply feel with his head what he can’t feel as well with his fingers. He didn’t play with or notice the other children. He just sat on the mat touching and enjoying the texture. I was disheartened. I sat and watched him, trying to find the joy in knowing that he got down. He got down from my lap!  That is a step! But, Satan eased himself into a little spot in me that allows fear and disappointment to take over. I sighed, and my phone rang. It was Joy. Joy has been a part of my family’s life for as long as I can remember. She has a wonderful teenager who is autistic. And, she just felt lead to call me in that exact moment. She listened. She related. She blessed me with her call. God blessed me with His calm, and Satan exited. He disappeared as quickly as he entered. 
God knew that I would need her advice and words of wisdom. He knew! 
There is so much more that I could write this evening, and part 2 will come.  So many more parents have reached out to us, though they struggle themsleves with autistic children. They are Godly, wonderful parents. They show me that I can do this because God told them that they could, too. 

Search my heart, O God…

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My heart hurts- physically hurts. I keep thinking this must be what the onset of a heart attack feels like. It must be. I keep telling myself that it’s not cancer; it’s not death; it’s not some unimaginable disease that only scientists can comprehend. It could be so much worse.

But, then the day comes rushing back, and my heart hurts. It’s as if a flashing neon sign is fervently blinking: LOW-FUNCTIONING, LOW- FUNCTIONING, LOW-FUNCTIONING!!!!

Yes. After 4 hours with the neuro autism specialist, this was the answer I was terrified of hearing. Because Samuel cannot understand words, names, commands, and is excessively delayed and cannot speak, he was diagnosed on the spectrum as low-functioning autistic. 

I will have to write more later on what is next for him, but right now my heart hurts. 

It is overwhelmed with grief for Maggie. My brain tells me that she must be so special to be the sister of a child who needs so much help. God must have amazing plans for her, as her compassion for Samuel is already beautiful; it will only grow even stronger in the years to come. But, I feel for her more intensely than I can say because I fear that therapy and appointments will take away precious time from her needs and wants. I know that Scott and I will try our hardest for it not to be this way, but in reality, we know it will be some days. 

I hurt for Scott- my husband who works long hours and gives every ounce of himself to us. His son needs help.

I hurt selfishly for me, too. I want to lie on the floor and have a 3 year old’s fit, but there is no time for that; there is too much to be done, and it would not help anyone to allow myself a nervous breakdown. 

And then, of course, there is Samuel. I have come back again and again to this blog tonight, hoping that the words about Samuel, and how I feel for him, would flow from my fingertips. But, I just can’t right now. Maybe I haven’t absorbed it well enough or broken it down fully in my own head for me to form the sentences needed to share my emotions about him. Hopefully, in time, I will. The Bible says that joy cometh in the morning, but for tonight, my heart hurts. 

You are my hiding place..

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Scott is home from Denver. I am thankful for God’s protection as he traveled. I am relieved that he will be with me tomorrow, as we got a last minute call from the nurse at the autism center telling us that they have moved Samuel’s appointment up from December to tomorrow. I have been anxious since the call came. Part of me is relieved that we may find out where Sam falls on the autism spectrum. Part of me is terrified of where he falls on the autism spectrum. And all of me, in this very quiet, dark moment wishes that the appointment wasn’t tomorrow- that the appointment would never come.  It reminds me of the anticipation Dorothy faced when waiting for the “great wizard of Oz” to appear from behind the curtain. He kept himself hidden- blissfully unexposed, never wanting others to see his true character. My mind is racing, searching for a place to hide itself from what may be. My heart is pounding, teetering on the edge of brokenness, needing to be guarded. Wanting, yet not wanting to know is difficult. 

Yet, I know that Jesus is my refuge and strength. He will protect my heart and give me His armor to be Samuel’s advocate. So, I am hiding in His arms tonight. I am resting in his safe haven of holiness and goodness- in his unwavering grace. 

The Bible says in Phillipians 4:6-
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.

Dear Lord, please comfort our hearts and minds as we embark on this unfamiliar and uncertain journey. Please help the specialist see just how special your child, Samuel, is and for her to know how to assist him.  Please help me to hold onto your love and mercy, sending your words flowing through my thoughts. I give it to you, completely. Thanking for your unconditional love.  Amen