Living Every Day With Autism – by Danine Huff Romero

My name is Danine Huff Romero, and I am a native Delawarean. That’s right – I was born, raised, and currently live in Delaware!  I even went to the University of Delaware and Goldey-Beacom College. I ventured out to the big city of Philadelphia where I have worked for nearly 20 years but most recently from home, in Delaware, for the past four years. 

I enjoy traveling, dining, and dancing.  I love it when I have time to binge-watch a random series – which is not very often! I also enjoy watching sports – including baseball.  I am the proud mother of two young children, an autistic almost eleven-year-old son – Alvin, and a neurotypical seven-year-old daughter – Alana. 

She’s Having a Baby

I gave birth to Alvin when I was 39 years old, and I had a fairly normal pregnancy though I was deemed high risk due to my age. I did have gestational diabetes but otherwise, there were no complications. My delivery was complex, and I ultimately had a successful cesarean birth, with no significant post-delivery complications.

Alvin struggled with breastfeeding and we discovered he was tongue-tied, which was corrected by surgery a week later. After that, we did regular baby stuff for months. Until one day we noticed him doing an odd shaking movement. We did not recognize the movement and thought maybe he was ready to walk a little early. We did not press the topic or bring it up to the pediatrician’s attention. 

The Diagnosis

At Alvin’s 18-month well visit, I was presented with a test called the M-CHAT, which screens for autism risk, and thus began our journey. The results indicated the presence of a developmental delay. Alvin’s POINTING indicator stopped our doctor in his tracks and led to further evaluations. 

For the next couple of months, I took my beautiful baby boy to specialists, therapists, and a developmental pediatrician and all I heard was about everything he could NOT do. It was awful. Just AWFUL!  Meanwhile, in my mind, he was amazing and super cute. What do you mean he doesn’t point?  Who cares? So what if he doesn’t play with your keys? Maybe he just doesn’t like grapes…or strawberries… or apples… or oranges! In these early moments, all I could think was there is something wrong with my child, but in my heart, I felt like he was simply perfect. 

I cried so much because I did not yet have any knowledge or understanding of autism. Even though I knew nothing, I do not recall questioning God, but I just remember feeling super sad about how they kept logging and saying what Alvin could not do. For some reason, that’s what rubbed me the wrong way. 

I had a brief moment of guilt. I thought I may have done something during the pregnancy that harmed him, but doctors reassured me that I did not. But through tears and uncertainty, it was all forward motion for me. I filled out reams and reams of paperwork, so that we could continue with appointments and evaluations.

I did find the evaluation process exhausting.  The questionnaires were extensive and repetitive.  However, Child Development Watch was particularly helpful with the mounds of paperwork and navigating Delaware’s state disability services.

Let the Service Begin

It was also difficult waiting for the developmental pediatrician to give the final diagnosis. I was kind of hanging in limbo for months, just knowing what he could not do and receiving some early services but with no diagnosis. It’s customary not to provide autism diagnoses before the age of two.  It was especially difficult waiting six months between the initial M-CHAT and Alvin turning 2, when it seemed the signs and evaluations did point to autism.

I later learned that the shaking motion he was doing as a baby was stimming. As a new mother, I would not have known to question such a thing. Nonetheless, in-home private services began immediately from agencies such as Child Development Watch and Easter Seals.

Finally, the developmental pediatrician diagnosed him at the two-year-old visit. This was a pivotal moment because at two years of age and with a diagnosis, Alvin was eligible to receive state services.  Hallelujah!  

At age two I did the unthinkable. Pearls clutched, with tears, heart palpitations, sweat…I put my two-year-old precious gemstone on a giant yellow school bus. He attended a half-day program at an elementary school where he received physical, occupational, behavioral, and speech therapy. Alvin has matriculated in the public school system ever since.  He has received all of his services in school per his IEP. Additionally, Alvin receives services at The Swank Autism Center at Nemours Children’s Hospital.  Some services have included feeding, toileting, occupational, and behavioral therapy.

Through all of this, where was God? From my experience, He was several steps ahead and sometimes side-by-side. Honestly, my faith did not waver so much. If anything, it grew stronger. My prayers become more purposeful. I had and still have an expectation that He will provide. God continuously amazed me with His provisions for Alvin which gave me peace and a clear and calm mind. 

We encountered the nicest people along the way from the doctors, nurses, therapists, teachers, educational diagnosticians, DDDS representatives, respite representatives, and so on. Because of this outstanding start to an unfamiliar condition, I felt like all would be ok. 

I did not know what this all meant for Alvin’s future. I honestly thought he could be cured because I thought it was like a disease. I thought we just had to put a lot of hard work into learning, and he would then be able to POINT and eat. I really did not have a clue but nevertheless, I felt very optimistic and determined to make sure whatever he needed, he would have to be the best Alvin Romero that he could be!

Challenges to My Faith During This Journey

Overall, my faith is solid. I did not ever turn away or distance myself from God. I may not like His choices or what I am going through, but He is my trusted source for all things. However, if I had to pick something that tests my faith – two things come to mind. One challenge is how I feel when I see my child suffer and there is nothing I can do about it. Particularly, when I know God sees it too and it’s still happening anyway. It’s in those moments that I can’t do anything but wait on God for the solution. 

For example, when Alvin would not eat solid food until he was five years old. I felt helpless because I couldn’t help him resolve the sensory anxiety and discomfort of putting the food in his mouth. The second challenge is the recurring thoughts of who and how Alvin will be cared for when I die. I literally feel like I can’t die. There’s no resolution for this one so far.   

Follow the Playbook

Some of my bleakest moments were when I would have cryfests when Alvin would have public meltdowns or anxiety attacks. I’m talking an – on top of his entire body while he is screaming and trying to elope and I am trying to calm him and keep one hand on the girl child, wipe my tears away, and swat my cape back over my shoulder – kind of moment.

It got to a point where I just did not want to go anywhere or would tell people that I couldn’t come to things. I was bruised and sore during his high eloping phase. It was flat-out painful – physically and mentally. But God reminded me that therapy isn’t just about Alvin. He told me to work with the doctor and therapists for things to help me too. I began collecting different suggestions to try to help Alvin during public outings. Those things that worked became part of our playbook. Outings can still be challenging but have become better over time.

Thankful

It is a pure joy to be Alvin and Alana’s mother. Being a mother is a very special and delicate role.  Being hand-picked by God to be an autism mother, or a mother to a child that has special needs, is an extraordinary honor. To me, this means that God chose me to do this assignment because He deposited in me what I needed to handle the requirements. By “handle the requirements,” I mean I absolutely have help. 

My greatest supporter is my mother, Mary Sessoms Huff, Mom-Mom to my children, who is almost 79 years young and has supported me and helped me care for my children.  Thankfully, she stepped in at the beginning of the diagnosis and stayed at home with Alvin so that he could begin his early intervention therapies. 

Alvin has required aid and assistance with many tasks and Mom-Mom has been standing in the gap throughout various stages of his development; like getting him to and from daycare, on and off the bus, doing COVID homeschooling (thank God she is a retired educator), going on school field trips, and more. Her presence in our lives has allowed me to go to work and earn a living to take care of my children, as well as return to school and earn a terminal degree. I am more than grateful for her sacrifice and dedication.   

My Hope

My hope and prayer for Alvin is that anything he puts his mind to do, he will succeed. I pray that access is never denied to him. I pray that inclusion is his reality. I pray he feels happy on the inside. I pray he has a healthy mind and body. I pray he reaches his full capabilities. I pray he is loved and cared for better than I ever did. I pray that people who meet Alvin are forever changed for the better. I pray he knows that Jesus loves Him and so do I. I pray God continues to bless him and protect him from any hurt, harm, or danger. Lord cover and keep him in Jesus’ name. Amen!

Rapid Fire

What’s Alvin’s personality? – He’s silly but very affectionate.  He loves hugs.

What is his favorite pastime? – Playing on his tablet or laptop.

What is his favorite subject? – Math hands down.  He’s a whiz.

Does Alvin like sports? – He loves swimming does that count? He just started Tennis – Jury’s out

What is his favorite TV show? – Numberblocks

What’s Alvin’s favorite game? – Wordscapes

Does Alvin do any activities? – Yes, he is in the Chorus at school

What is Alvin’s favorite food? – Pizza

What is his favorite holiday? – Christmas

Who is Alvin’s favorite superhero? – That’s a tough one. Mostly Spiderman sometimes Black Panther

What is his favorite movie?  Alvin struggles with movies but he will watch Encanto

What is Alvin’s favorite dessert? Pound Cake

What is his favorite book? Any Pete the Cat books

This is Alvin!  This is US.  EVERYDAY AUTISM IS US!

ENCOURAGEMENT FOR MOMS:

I encourage every autism mom to focus on the ‘Positive ABCs’ on this journey.

Anticipate The Best

• He/She can do IT
• He/She will do IT one day
• He/She can do this now and that’s ok
• He/She is working on IT

Be Positive

• In your thoughts
• With your words and your tone
• With your behavior and actions
• When you are correcting or teaching
• When you are upset
• When you are down or in despair

Celebrate Achievements

• Celebrate with verbal praise
• Celebrate physically with a hug, smile, or a high-five
• Celebrate using sign language
• Celebrate with awards like highly motivating items

I pray these ABCs add sunshine into your Everyday Autism life!

PRAYER FOR MOMS:

Father in the name of Jesus,

Please remind our autism moms how special they are to have been chosen by YOU for such an assignment.  Please continue to care, comfort, guide, protect, provide, surprise, love, and humor them as YOU remain woven into the details of their lives.  Give them renewed energy each morning and a gentle hug each evening.  Those two pals, goodness and mercy, Lord please let them hang out with these moms wherever they may go.  Let them be the recipients of unexpected kindness.  Lord, shower them with droplets of love. All these things I ask in the matchless name of Jesus. Amen!

Connect with Danine and Everyday Autism:

Danine Huff Romero Facebook – https://www.facebook.com/danine.huff

Website – https://www.everydayautism.org/

LinkedIn – https://www.linkedin.com/in/everydayautism/

Instagram – https://www.instagram.com/everydayautismorg/

Facebook – https://www.facebook.com/profile.php?id=100091277093787

Want to hear more of Danine’s story? Watch our Moms Night In conversation on YouTube:

Or watch here on our Faith-Filled Moms Facebook page.