Dad’s Day

Being the creature of habit that Jacob is (admittedly, I’m the same), he notices when something is different. 

Most days that he attends his day program, his dad and I take and pick him up together.  If it turns out that only one of us can, he will do a double-take as he exits the building.

Last week, Mike had an afternoon appointment so I was running solo.  Jacob came out of the building and looked in the driver’s window and I could tell he was wondering why I was picking him up alone.  He got in the van fine and was compliant on the way home.  When we went inside, he did a quick room-to-room survey.  Once he’d made it through the house, he did a U-turn and headed to the garage. 

I watched to see what he could possibly be doing.  Sweet buddy, opened the side door and got in.  I was following bewildered that we had just gotten home and he was getting back in the van.

He was waving wanting me to buckle him up when it dawned on me.  His daddy wasn’t part of the pick-up team.  He assumed he was home.  He wasn’t.  I do believe Jacob thought we needed to go get him.

When I explained that Mike would be home in a couple of hours, Jacob accepted my answer and went back inside. 

It was really special and funny at the same time. 

Not long after that, Mike was actually out of town for an overnight trip.  I got Jacob ready for bed following our usual nightly routine.  Right before we were doing lights out, Jacob jumped up, pulled his window blinds aside, and peered out.  You guessed it, looking for his daddy’s car! 

He might be getting tired of me!

In honor of Father’s Day, from Jacob to his dad:  I’m so happy you are mine and I’m your Cooter Bug. You are the very best daddy!  I’m lucky that I get to live with you.  Thank you for being my best friend!  I love you so much!!

Positive Pause

I was raised to focus on the positive.  Training yourself to look for the good, what is right, worthwhile, goes a long, long way toward a healthy mental state.

Today’s blog is not directly about Jacob. But, it is about how I respond to him and not letting my circumstances pull me down.  There is something to be said about looking on the bright side.  It will make today, tomorrow, and the day after that better! 

The story below was shared with me probably 20 years ago.  I cannot give credit to the author because I haven’t been able to confirm. 

Maybe it will give you pause and something to think about as well.

The 92-year-old, petite, well-poised and proud lady, who is fully dressed each morning by eight o’clock, with her hair fashionably coiffed and makeup perfectly applied, even though she is legally blind, moved to a nursing home yesterday. Her husband of 70 years recently passed away, making the move necessary.

After many hours of waiting patiently in the lobby of the nursing home, she smiled sweetly when told her room was ready. As she maneuvered her walker to the elevator, I provided a visual description of her tiny room, including the eyelet sheets that had been hung on her window.  “I love it,” she stated with the enthusiasm of an eight-year-old having just been presented with a new puppy. 

“Mrs. Jones, you haven’t seen the room…just wait.”

“That doesn’t have anything to do with it.” she replied. “Happiness is something you decide on ahead of time.  Whether I like my room or not doesn’t depend on how the furniture is arranged, it’s how I arrange my mind.  I already decided to love it.  It’s a decision I make every morning when I wake up. I have a choice; I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed and be thankful for the ones that do.  Each day is a gift, and as long as my eye open I’ll focus on the new day and all the happy memories I’ve stored away, just for this time in my life.”  

She went on to explain, “old age is like a bank account, you withdraw from what you’ve put in.  So, my advice to you would be to deposit a lot of happiness in the bank account of memories.  Thank you for your part in filling my memory bank.  I am still depositing.”

And with a smile, she said: “remember the five simple rules to be happy:

Free your heart from hatred.

Free your mind from worries.

Live simply.

Give more.

Expect less and enjoy every moment.” 

Jacob’s Granny recounts her own grandmother talking about special days giving her lots to think about.  Fun memories that were deposited in her bank. 

Now she is doing the same.  Granny started a Donut Day with her great-granddaughters (Jacob’s nieces).  While it is a tiring day from start to finish, she wouldn’t trade it for anything.  The giggles, sprinkles, tasting, powdered sugar, smiles, and hugs are all going in her memory bank. 

Free your heart from hatred. Proverbs 10:12 says: Hatred stirs up conflict, but love covers over all wrongs.

Free your mind from worries. Matthew 6:25-27 says: Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?

Live simply. Philippians 4:11-13 says: I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength.

Give more. Acts 20:35 says: You’ll not likely go wrong here if you keep remembering that our Master said, ‘You’re far happier giving than getting.’ The Message

Expect less and enjoy the moment. Psalm 16:11 says: You make known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand.

A week ago, we received hard news about Jacob’s granddaddy. Words like brain atrophy and dementia. A decline that we saw but didn’t seem real until a neurologist said so. Thankfully, he is still able to recall some new information. But it is those special memories he deposited through the years that will bring him more peace and joy. He’ll have those to draw from on down days.

Yesterday as I visited him, his speech therapist was working with him. He said, “tell her about Jacob”. I hope memories of him singing to Jacob will bring him happiness. He’s always loved and appreciated music but he wasn’t one to sing. But he did to his first born grandson. Recent events may not sick with him long but he has deposited much to make him smile.

Being with him reminds me to focus on the good times while we make memories. While he interacted with hospital staff last week, he said, “if you are friendly to people, they will be friendly back”. I’m soaking up his wisdom for the day I’ll need to make a withdrawal.

Create a positive pause and see what you might deposit in your memory bank.  You’ll be glad you did as your happiness grows.  

Dear Josh

When your dad and I married, I wanted a house full of children. At the time, four seemed like a good number. We were young and I was definitely naïve. By Jacob’s first birthday, and it seemed something was wrong, that dream went on the back burner.

As we heard words like developmentally delayed, severely profoundly retarded, autistic, I became downright fearful of having another child.  We went to a genetic specialist with one question in mind, what are our chances of us having another child with a disability? 

In short, the answer was, the same as anyone else.  The physician encouraged us to have another one if that was our desire.  While I was positive I wanted another one, I was still terrified.  One part of me was confident God would provide whatever we needed for our family.  I guess the other part was afraid His provision would still be hard.  

By Jacob’s third birthday I was pregnant carrying you. 

That pregnancy was easy as far as the way I felt physically.  It was HARD as far as emotions.  Had I done something during the first pregnancy that ’caused’ Jacob’s disability?  I tried not to worry but it was always on my mind and I peppered Dr. L with questions at every visit. 

Because of that, by the time I went into labor, I had the attention of two doctors making sure the delivery went smooth which ultimately meant a c-section since your birth weight was 2 pounds more than Jacob’s.  

The pressure was on, although, I hope you never felt it.  I was always on the lookout for eye contact.  Would you imitate us?  Wave or play peek a boo?  Cry when we left you with grandparents.   Goodness, I looked for every indication that you were ‘normal’.   Seemed I was looking for what Jacob was not.

All the things, and more, were accomplished on time, with flying colors, which did make me breathe easy. 

And then you were growing up too fast. Remember the time I was at a parent/teacher conference and your elementary school teacher said there was only one thing that concerned her?  You didn’t play with your peers on the playground for watching Jacob to make sure he was okay.  While we never suggested you keep an eye on him, you naturally felt that was your job. 

Once I overheard your best friend (when y’all were probably 10 years old) say, “why doesn’t Jacob talk?”, to which you calmly and quickly replied, “because that’s the way God made him.”  I’m thankful that was your reaction and that your group of childhood friends seemed to adopt that as well. 

It wasn’t long you were placed in the ‘gifted program’.  Without realizing it, I suddenly felt like I had something in common with other parents.  That was a wonderful and new feeling.  Before we felt isolated and alone.  Like no one could possibly understand what our daily life looked like.  Finally, we were in a group of parents that could compare notes.  Notes on expectations, parenting, discipline, homework, all the normal things.

Thank you for being an easy child to parent.  I don’t believe I ever said something like, just wait until you’re a parent!  I can only remember one incident that you were so frustrated at us that you ‘showed out’.  I sure don’t recall the offense but can’t forget your empty threat, “fine, I just won’t go play at youth group tonight!” Like we were going to be devastated when you didn’t go do what we knew you looked forward to doing weekly. There was the ongoing conversation of me telling you that when you are paying for electricity, you can have your room the temperature of an iceberg!! I really can’t put that in ‘being a difficult child’ category though.

It seemed your behavior was in line with—my parents have enough on their plates.  I’ll not rock the boat.  I hope we never imposed that on you but you were smart and could read between the lines. 

Thank you for being YOU!  Willing to be our eyes to watch your brother.  Willing to hang out with him so we could do something with friends occasionally. Not afraid to be different from the crowd.  Kind and considerate.  Sensitive to the core. Overflowing with compassion.  You could probably identify with oldest, middle, youngest, and only children during different stages of your life. By our family dynamics you had to assume that role.  Maybe that is why you are so well balanced!  No matter what, where, or when, you took everything in stride. 

We are so incredibly proud to call you our son.  Completely in awe of the brother, man, husband, father, friend, and creative genius that you are.  I’ve wanted you to have it all. I think you already do.

Love you deep and wide,

Mom

Bumps, Bruises, Breaks

If you are a parent, you have memories of your young child falling and getting a huge goose egg on their forehead.  I imagine every parent has that story.  Fell on the brick hearth, fell down the stairs, etc.  To watch that bump turn into something bigger hurts and can be alarming. 

Then, as the toddler gets older, they come to you with their boo-boo.  Always funny how a band-aid makes even the tiniest spot all better.  Those marketed toward kids are especially fun.

In the blog post One Tough Cookie: https://problemfreephilosophy.blog/2020/04/30/one-tough-cookie/, I told the story of getting him ready one morning many years ago to discover some awful scrapes on his arm.  They were red and looked painful.  I was totally puzzled over the how. 

It was so bothersome that we installed a camera in his room.  It was so long enough ago that it was a hassle to use and pull up images on our computer.  Thankfully, technology has given us more efficient tools now. 

A constant source of unease for me will be a bump or bruise that appears on sweet Jacob.  I continue to watch for those and continue to rarely know the cause.  I wish he could tell me what happened, how it hurt, then let me kiss it and make it better. 

Nineteen years ago we sued the public school system where Jacob was enrolled.  It all started when I was getting him ready for bed one November evening in 1999.  There were horrible bruises and contusions on both arms from shoulder to elbows. Photos that are hard to look at so I’ll not share here.

Come to find out a special ed teacher’s aide, had dragged Jacob down the school hallway. 

It was hard enough when he broke his collar bone at the same school with no witnesses but this, this was truly gut-wrenching. 

Not wanting another family to face abuse at school, we filed a lawsuit.  The amount was exorbitant.  It was all about getting the attention of the school district.  Hoping to pay the attorney, get the aide fired, and secure a monitoring system for parents to see their children in the school via home computers. 

In the end, the lawsuit was dismissed.  Sovereign immunity for the school system was their defense  They argued the abuse was not intentional and never admitted guilt.  Sadly, we weren’t the only family that had been hurt at the hands of this aide.  And he remained at the school after the incident which was equally as disturbing.  It felt like they turned their heads while protecting staff more than their most vulnerable students. 

Bumps and bruises are part of life.  Unfortunately, sometimes so are broken bones.  Accidents happen every day. But when any or all of those come at the hands of a person paid to help and protect your non-verbal child, it is the worse kind of stab. 

I hope no one reading this has had to realize their child has been abused.  It was a nauseating nightmare.  And there was absolutely no way I could kiss and make it better.  It haunted me. I wondered if it haunted Jacob.

During the process, we had an amazing support group.  Our families and our friends.  Notes like these were what helped me ‘hold it together’ during the trial. 

Why am I talking about such hard stuff?  This past weekend I was chatting with a friend.  Applauding her transparency in difficult circumstances they had been through with their child.  In conversation, she said, “when you are going through hard times, it feels like you are alone.  I share because it may help others who are facing something similar.”

Know that no matter how horrific your situation may be, there is probably someone going through something harder.  And when you are on the other side of the pain, be the helping hand they need.  Show kindness and grace.  Do something to encourage and remind them that they are not alone. 

Finally, all of you, be like-minded, be sympathetic, love one another, be compassionate and humble.

1 Peter 3:8

Focus on These Things

In the midst of our #shelterathome period, I was connecting weekly with a small group of friends.  In the beginning, it was via zoom meetings and then later we switched to FaceTime group calls.  During that time we covered a tiny book by Max Lucado called Less Fret, More Faith, An Action Plan to Overcome Anxiety.   If ever there was a time to tackle anxiety, 2020 seemed to be the year.  Right? 

We had a boatload of ’what-ifs’ on our minds. So much stuff to weigh us down. Create anxiety. And, what better place to unpack those than with non-judgmental friends using the word of God as our lighthouse. A whole lotta life has been shared as well as much laughter, sometimes grief, plus happy and sad tears.

Holding on to anxious thoughts actually creates depression in me.  Maybe it does in you, too.  If so, you are not alone! That certainty of a coming storm.  An impending doom that clouds every thought, all movement.  A voice speaking negative thoughts getting louder and louder.  Realizing it is my own internal self-talk capable of causing the most pain.

“Thoughts, whether positive or negative, grow stronger with repetition.”   

Charles Swindoll

When you are overcome with the what-ifs, know God has power over EVERY detail.  No. Matter. How. Small.  If you will  give your anxiety, frustrations, disappointments, and fears to him, he WILL give you what you need for that minute, hour, day. 

More than once, on a Thursday when a blog would go live, something would occur that magnified the very subject of that post. The last time that happened was when It is Going to Be Good was published: https://problemfreephilosophy.blog/2021/04/22/it-is-going-to-be-good/

It was one of those days that Jacob wasn’t happy. I had trouble getting him ready. He was the opposite of cooperative. I was in tears before heading to his day program. I wasn’t convinced it was going to be good.

Part of my anxiety was knowing I had just said to the world, “setting my face to see God’s hand—it is going to be good”.  In that hour, I was overcome and truly had trouble taking my own advice.  I was wallowing in my self-talk, “you need to practice what you preach”.  In all honesty, it was a rough morning and took the better part of the day for me to shift my focus from poor me.  To let go of what was bothering me and give it to God.

Here is the deal: I do not believe Jacob set out to give me a hard time. He is human and not perfect but he is also autistic. Often, what appears to be his determination to give me grief and ruin my morning is not about or against me at all. It is because he is struggling. He is having a hard time. He doesn’t know how to express a feeling. It is all he can do right then.

Lucado asks:

Are you laughing less than you once did?

Do you see problems in every promise?

Would those who know you best describe you as increasingly negative and critical?

Do you assume that something bad is going to happen?

Do you dilute and downplay good news with doses of your version of reality?

Many days would you rather stay in bed than get up?

Do you magnify the negative and dismiss the positive?

Given the chance, would you avoid any interaction with humanity for the rest of your life?

If so, focus on these verses from God’s word:

Rejoice in the Lord always. Again I will say, rejoice! Let your gentleness be known to all men. The Lord is at hand. Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus. Finally, brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and if there is anything praiseworthy—meditate on these things. 

Philippians 4:4-8
 

Oh, that I could be quick to take a deep breath and remember God gives me today.  I don’t have to do it on my own.  Neither do you.

Literally

One day last week we kept Jacob home from his day program because of a predicted Severe Weather Alert day.  Rain isn’t so bad but when there is a chance of tornados, home is where I want him.  For his sake and others.  It would be pretty miserable for everyone hunkered down in a hallway. Because, he doesn’t do hunker very well.

We were under a Tornado Watch for most of the day. But, by mid–afternoon, the local sirens started sounding and we were getting notifications on all devices.  Tornado Warning!  Take cover now. 

Jacob was living his best life on a pajama day until the sirens went off. I quickly changed his clothes and made sure he had on socks and shoes. 

I grabbed a couple of toys as we directed him toward our safe space.  His dad and I were reassuring him that everything would be alright and we’d all be together.  Both of us saying things to encourage his cooperation. 

He was really good considering we were in a closet.  Played with a toy, twirled around, sat on the floor, and wanted out, all in a short span of time while we watched radar for the warning to be lifted. 

Thankfully, it passed by us quickly and we felt comfortable going about the day.  Jacob had other plans.

As he left the closet, he grabbed my purse.  Sometimes he does that and hands it to me, meaning—’it is time for you to go’.  This time was different.  He was in charge of the purse but wanted the three of us in the garage. 

I could not figure out where his determination came from in leaving home.  Then his daddy made sense of it. Remembering what he said while trying to get Jacob to move into the closet, ‘it’ll be like we are going camping’.  Knowing we could lose power, we’d be in close quarters, and Jacob enjoys going camping (in a cabin), it was what popped into his mind.  And sharp Jacob, he heard that and waited patiently for the tornado to pass so he could go camping!

Bless his sweet heart—that was the very thing he was thinking about while we were trying to see if a tornado was aiming our way.  I love how he has total trust in us to keep him safe.  He also had a plan for when the threat was over. 

Once our best guess helped us realize what was going through his mind, we distracted him and he went about playing as usual.  

Recently a kind man asked if Jacob absorbs things. Indeed. He. Does. He may appear to be in his own world but he is processing every word. Pretending isn’t something that makes sense to Jacob.  A reminder that he listens and he plans.  And we need to plan, too.  Literally.

Happy Mother’s Day

Josh wrote this to me for Mother’s Day in 2005. I suppose it carried extra weight since, in a sense, he was not only writing from him but also for Jacob. As you can imagine, I was moved to tears. The sobbing sort.

A letter is better than any gift, no matter the cost. A conversation can be replayed in one’s mind but interruptions tend to dilute it and over time the exact words can be forgotten altogether.

I needed this then. Autism robs Jacob of expressing so much. My imagination allowed me to see Jacob agreeing with his brother.

Two months later, Josh married the love of his life. So, perhaps when he composed this, he was realizing on that day in May, as I was, that life was about to really change for us.

I needed this then. I may need it even more now. A saved letter continues to get better and better.

Happy Mother’s Day everyone. Enjoy the season you are in now. You’ll blink and it will be over.

The Special Mother

Am I the only one getting countless ‘Just in Time of Mother’s Day’ emails? I didn’t think so. As Mother’s Day approaches and mothers around the globe are celebrated, this is for all of you – just in time. I’ve said it before and I’ll say it again, “I do not feel extraordinary”. I believe everyone has victories and challenges that are equal on the high and low scale. I also believe, with every fiber of my being, that I was chosen to be Jacob’s mother.

The following, titled The Special Mother, was written by Erma Bombeck over 30 years ago. My reactions to this poem are in blue.

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth; son. Patron saint…give her Gerard. He’s used to profanity.”

“Forrest, Marjorie; daughter. Patron saint, Cecelia.”

“Rutledge, Carrie; twins. Patron saint, Matthew.”

Finally He passes a name to an angel and smiles, “Give her a handicapped child.”

The angel is curious. “Why this one God? She’s so happy.”

“Exactly,” smiles God, “Could I give a handicapped child to a mother who does not know laughter? That would be cruel.”    A piece of advice to engaged or newlywed couples—laugh with your spouse!  In my opinion, my man is still the funniest person on earth.  I knew laughter well when Jacob was born. 

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.”   Patience is at the top of the list of things I’ve learned, and will continue to learn, parenting Jacob. 

“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make him live in her world and that’s not going to be easy.”   Being first-born gave me a degree of independence, believing I could.  We share our world, sometimes he is in mine and sometimes I am in his.

“But, Lord, I don’t think she even believes in you.”  I was a believer, when Jacob was born, but my belief has been tested more than a few times.

God smiles, “No matter, I can fix that. This one is perfect -she has just enough selfishness.” No one likes to admit they are selfish.  But at my core, it’s the truth.

The angel gasps – “Selfishness? Is that a virtue?”

God nods, “If she can’t separate herself from the child occasionally, she’ll never survive.”  Thankfully, I learned the value of time away with my spouse and with friends.  But, even though I understand how very valuable ‘me time’ is, I’m guilty of needing to be back with him soon.

“Yes, here is a woman whom I will bless with a child less than perfect.  And bless me, God did! Note: we are all less than perfect!

She doesn’t realize it yet, but she is to be envied. She will never take for granted a “spoken word”.   I’m looking forward to that day in heaven. 

She will never consider a “step” ordinary.  After the neurologist told us Jacob might never walk, you better believe, watching him take a step was miraculous. 

When her child says “Mummy” for the first time, she will be present at a miracle, and will know it!”  Another heaven moment.

“I will permit her to see clearly the things I see…ignorance, cruelty, prejudice….and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My Work as surely as if she is here by my side”.    I’ve seen those things and could only face the next day because I know that God is in me, with me, and for me.

“And what about her Patron saint?” asks the angel, his pen poised in mid-air. God smiles, “A mirror will suffice.”  When I look in the mirror, I see the woman God made me to be.  Preparing me through my life to parent two boys. Knowing I would make it my life’s work to be there for them, guide them, protect them, and love deeply with my whole heart. 

May God bless you today,

And keep you all year through.

May God give you all the faith it takes,

To make your dreams come true.

May His love and wisdom always help,

To guide you on your way.

May His light shine down upon you now,

To bless your every day.

I was chosen. And so were you.

It is Going to Be Good

It was a beautiful morning.  Blue skies, 60 degrees with a soft gentle breeze.  I had driven Jacob to his day program and we were in a parking space with windows and doors open, enjoying the wonderful day. 

As vans pulled up with various riders, we watched guys and gals climb out and make their way into the building.  It was really quite nice.

A certain young lady got out with minimum assistance and started into the building.  She slowly walked by our open doors and that is when I heard her.  “I am not in the mood for this.  I am not in the mood for this. I am not in the mood for this.” 

Bless her, she was wearing a somber expression as she moved past us while mumbling to herself.  I couldn’t help but wonder what ‘this’ was.  An activity, a person, a meal? The staff member assisting her said something like, “remember what I told you, if you make up your mind to have a good day, you will. Tell yourself, it is going to be good.” 

Just this week, I’ve watched Jacob exhibit the same train of thought even though he isn’t able to speak the words. 

Monday was awesome from the wake-up to waving goodbye to him at the center.  He was calm and happy (the same way he was the day we witnessed his classmate grumbling). I repeated several times to his daddy that Jacob had been in such a good mood.  Those mornings are a gift. Seriously! 

Then the next day he got up on his own without a wake-up visit.  Only problem was, he was wearing his grumpy pants. As if getting out of bed was a really, really bad idea.  He didn’t want me around and resisted when I started getting him dressed.  We were about halfway done and I had to walk away to give us both a break.  Nothing pleased him.  He became destructive. I could not put my finger on the problem.  The only thing that made sense to me was he was not in the mood for this…

Reminds me of our then 5 y/o granddaughter who was explaining something her parents had put into place –   “We have some laminated cards ‘cause I was fussing, fussing, fussing.”   I don’t know what she was fussing about but if laminated cards would help Jacob, I need to make some for him!

Don’t we all have days like that?  Beautiful sky, perfect temperature, birds are singing and we aren’t having it. I am not in the mood for this. Thankfully, giving him some space and time, he was ready to go and we made it without incident.

Great days are a gift.  Mediocre days are, too.  Every day with Jacob makes me grow, smile, wonder, trust, ask for help, see the positive, examine my own mood, give thanks, and seek direction. 

Setting my face to see God’s hand—it is going to be good. 

Family Ties

I’ve said it enough, you are probably convinced, that hearing the word autism and your child’s name in the same sentence is devastating.  A gut punch that hurts.  It seems like a forever pain but it does ease up through the years.  

This past summer, I got this text from one of Jacob’s cousins:  I’m not sure if mom has told you about B having so much trouble in school and they thought he had dyslexia. So today we went for some testing. They said he is not dyslexic but possibly autistic. We have to go for further testing and see. I have cried for the past 2 hours.  

(Side note—I feel like this niece is half mine.  She is 5 weeks younger than my other son.  Once my sister commented that her daughter is so much like me.  She definitely has occupied a place in my heart for her whole life.  To know she is hurting makes me hurt, too.) 

My response:  Oh sweetie, I love you and wish I could hug you tight right now. He is going to be okay and so are y’all.  Your mom mentioned quite some time ago that school was a struggle for him but that was the extent of her comment. There are so many layers to autism and his may be more of a learning disability and on the high end of the spectrum. If that. Nothing I’ve seen with B screams autism but my exposure has mainly been with the non-verbal, severe end.  The testing center may or may not agree with what you were told today but they have great physicians who can point you in the right direction. Keep me posted. I am not in the know or part of any groups that would have relevant info for kids his age. I will be a listening ear if you’d like to talk or cry.  Oh, how I love you. God loves your family more. 

Three months later while we were out of state for a weekend getaway, I got a text from my sister:  N wanted me to text y’all to tell you that B has officially been diagnosed with autism.

Even though I knew it was a possibility, goodness it felt like another punch in the gut. We were hanging out with friends but my mind was far away. 

There were so many things that I quickly marked off as ‘nothing like Jacob’.  But the one thing that wouldn’t leave me is how a special needs child will always need their family more.  Sometimes a little more and sometimes, a lot.  A parent would do anything to save their child from pain, embarrassment, frustration, heartache.  That’s the part that weighs so heavy—we want to carry the burden for them. 

The blessing here is that this sweet boy has a really, REALLY wonderful family.   A brother with a heart bigger than Texas: 

Parents who will always fight for him and grandparents who will go the extra mile.  Great grandparents, aunts, uncles, cousins who are cheering him own in whatever he sets out to do.  And most importantly the love of God the Father. 

My niece shared this a couple of weeks ago:  This past year our B was diagnosed with autism spectrum disorder, sensory processing disorder, and auditory processing disorder. He is smart as a whip but struggles academically. This has been a year of learning and understanding how his little brain works and functions. He is our special gift from God and we know HE has Mighty Plans for him! If you know B you know his smile is contagious, he is so funny and quick-witted. He loves tractors and can fix anything!! Our world is better with his beautiful soul!

Family ties born decades ago will always be there offering support and understanding—a strong, special bond. Our family tree has very deep roots that can weather the storms of autism.

Is it unusual to have autism in multiple members of a family?  Unfortunately, I personally know families who have more than one sibling affected.  What about first, second, third cousins?  I haven’t read enough to answer that.  There are genetic researchers and scientists on opposing sides of causes and cures. 

I do know this—God is not taken by surprise and has already put the right people in place for HIS purpose to be fulfilled in our families. Those people may be relatives or they may be friends that are so dear and near that they are ‘like’ family. We are both fortunate to have friends in that category. Just today I got a text from a friend. I read it out loud to my husband and said again, “we have the best friends”.

I want to be perfectly clear.  Would we have signed up for the autism club?  Honestly, no.  Now that we are members, do we want out?  No.  Do we wish life was easier for Jacob and precious B?  Absolutely, yes.  Are we thankful God chose us to be parents to these boys?  YES!  A million times.  YES!

This is my bottom line—autism in families does make them special.  They often stand out because they are different.  Different is good.  And by being transparent about our struggles, I hope it helps you embrace our differences and those you notice in others.  Ask questions, keep judgmental thoughts to yourself, extend a helping hand, be kind, try empathy instead of apathy. 

It’s tough for our boys when they realize they are not able to do something as expected.  Imagine how scary their world is when it looks, sounds, smells, tastes, and feels altogether different from their perspective versus ours.  Applaud their bravery!

In this month of Autism Awareness, I wanted to take this opportunity to introduce you to my great nephew. 

And by great, I sincerely mean GREAT!