For a variety of different reasons, I’m changing the names of the people mentioned in this post, but I tell you what…You guys, this gal is a GEM of a person! For starters, she is a mom to 4 kiddos under 5, which in my book, has her marked as a freaking saint! But she’s SO much more than that too – she is so thoughtful & GENUINE and one of the sweetest people I’ve ever met.
We originally met through mutual friends way back before either of us had kids & we’ve stayed in touch through random ways of communication & holidays here & there. However, I always seem to run into her at Target (shocking, I know) & I remember a very specific instance where I was on maternity leave & probably half awake walking around the aisles like a total zombie & she stopped me to say hi. Instantly she could read the exhaustion all over my face & she offered up a few encouraging words which honestly turned my entire day around. And over a year later, when I told her that I wanted to start a blog, months before I ever actually did anything about it, she told me, “You are a great writer & blogging was made for you!” & that has stuck with me! I often go back to that note anytime I’m feeling stuck or unsure of how to write next.
And when I asked if she wanted to write a guest article on Grit & Grace, she was all for it! She’s giving us a little peek into what it’s like to be a mom to 2 special needs children. By the time you’re done reading her story, you’ll understand why she’s so strong & brave. This mama is so incredible & I am so thankful that she’s decided to share a bit of her story with you guys!
We have chosen to keep our children’s diagnoses private excluding close family and friends. We don’t know our children’s’ developmental trajectories, and we hope someday our children are able to tell their own stories, unhindered by our perspective as their parents. We believe it is their story to tell, not ours.
We have four children under five. Our two middle children have Autism, Lucy and Ricky. When Lucy was 6 months old, I began googling Autism. She was only 16 months younger than her sister, so the differences in development were blatant. She rarely smiled and preferred laying on the ground staring at the ceiling, rather than the activities of the world around her. At about 9 months old, she became inconsolable unless we put on a children’s movie. She didn’t like to be touched and hated any kind of loud, unpredictable noise. Between 6 and 18 months, we continued to Google Autism off and on. Lucy had red flags, but she also had moments of interaction where she seemed neurotypical. At 17 months, we took her to a psychologist because we were worried she might have developed attachment issues. The psychologist reassured me within the first appointment, after seeing my interaction with Lucy and her 1-month-old brother, that attachment was not an issue. We continued seeing her as we worked on child-directed interaction strategies to engage Lucy. At 20 months old, we called the school district to have her evaluated. School districts offer free home-based services for children ages 0-3. (If you are concerned about your child’s development, this is a great place to start.) A couple months later, she received her educational verification (by a school psychologist) for autism and both receptive and expressive language delays. Receptive language refers to what a child understands. Expressive language refers to what a child can communicate.
We immediately got her on the waitlist to be medically diagnosed. Four months and a long day of testing later, including an hour-long Autism Diagnostic Observation Schedule, a speech evaluation, an interview, and a meeting with a social worker, she was given the medical diagnosis. It is important to get a medical diagnosis so that your child’s insurance will cover private services, such as Applied Behavioral Analysis Therapy (ABA). ABA Therapy is recommended as one of the bests treatments for Autism. It is typically suggested that children with Autism receive about 20 hours of ABA Therapy a week.
Coming to terms with an Autism diagnosis has been an ongoing process. At first, although we knew something was wrong, receiving the diagnosis still shocked us. We never imagined that we would be parents to special needs children. My husband has been more stoic through the journey, focusing on the positive and on the actions we can take to help our children. I have been more emotional and worried about what the future holds. I do the majority of the grunt work with interventions. Not only do we have to work on making time for each other, but we have to openly discuss our feelings about Autism. We talk about the darkest feelings that we have in order to keep them from turning into resentments about each other and our children. Acknowledging the worst parts of us hasn’t been easy and it will be something we have to continue to do for the foreseeable future. However, it has also made us an unbreakable duo. We have a deep respect for each other. I have seen his worst and he has seen mine, and through all of it, our family has been our first priority.
Before we knew it we had another one on the way & by the time Lucy was one and a half, her little brother, Ricky, was 2 months old. He seemed as though he was developing more typically than Lucy, but we couldn’t help but watch for signs. While he didn’t have the same quirks as Lucy (walking with her back to walls and laying around staring at the ceiling, he did have a language delay. We got him into speech therapy around 15 months & by the time he was 18 months, we were fairly confident he had Autism. His biggest red flags were his delays in language as well as frequent high-energy tantrums where he would not let us console him. Lucy’s therapy provider pulled some strings and we had Ricky medically diagnosed at 21 months. Most children are diagnosed around the age of 4. We are so fortunate that our children were diagnosed around age 2 and thus gained 2 extra years of vital early intervention. Once Lucy was diagnosed, we knew the chances of our future children having Autism increased. While it was easier to accept the second time around, it still sometimes feels like the weight of Autism is being piled on us. Instead of dropping one child off to therapy, we drop two. Instead of paying for one child’s interventions, we pay for two. Instead of dealing with one child’s struggles with communication and emotional outbursts, we deal with two. On the other hand, our children will have each other as they grow older. We hope they are able to understand each other on a deeper level and provide each other support when they feel alone.
Before both Lucy & Ricky were diagnosed, we had numerous people tell us they didn’t think our children had Autism. Family members, special education teachers, speech therapists, and a psychologist all thought our kids just had language delays. While these people meant well, it also cost my children a few months of valuable intervention time.
LESSON LEARNED: Follow your gut. If you think something is wrong, have your child evaluated. The best case scenario is they tell you that your child is developing typically and you leave with reassurance. The worst case scenario is they catch a problem early and your child receives early intervention.
One of the worst moments we have had was during a school district early intervention therapy. We decided to meet at the mall play place to work on interaction with peers. The noise in the play place caused my almost 2-year-old daughter, Lucy, to have a meltdown. She kept running away to stand by the potted plants or to sit at the tables with the retired walkers. A middle-aged woman decided to comment that my daughter was teaching her daycare kids to behave badly. I was already sweating profusely in the middle of winter from carrying my 5-month-old (yup, that’s right we had a new babe, Ricky), chasing Lucy, and stealing glances at my oldest child, who had just turned 3 years old, in the play place. I burst into tears. I did, however, feel a teensy bit better when our speech therapist told the lady off. It’s been a year since the incident, and Lucy’s senses have been regulating better which means she now loves the mall play place!
LESSON LEARNED: You are only seeing a small portion of the picture. If you see a parent struggling, offer a smile and an “I’ve been there.”, rather than a snap judgment.
Have you ever had those moments when you’re barely holding it together? When your kids had a rough day at therapy or school? When they seem to be regressing in development? When they are fighting nonstop? When you want to be a Pinterest Mom, but can’t seem to pull it all together? When Ricky is yelling because he needs sensory input which causes Lucy to cry because it’s sensory overload to her? You officially have permission to let it go. Raising kids is hard. Raising kids with special needs is hard. Give your kids vanilla wafers and goldfish for dinner and pop in a movie.
LESSON LEARNED: Your kids won’t remember if you made them Martha Stewart dinners every night and did crafts worthy of PBS, but they will remember if they felt loved. Put down the unrealistic expectations you have set for yourself, snuggle your kids, and tell them you love them.
Some days are harder than others. Some days I’m home alone with 4 kids under 5 counting the minutes until their dad gets home. Usually, those days are out of the blue so I can’t plan ahead. My best friendship moments have been when people show up for me. When they call and say they are in the neighborhood. When they ask if they can bring dinner. When they FaceTime with my daughters for an hour so I can get some cleaning done. These are the friends who get it. Who get that sometimes you just need someone to sit in the chaos with you.
LESSON LEARNED: Just show up. When your friends are going through a hard time, don’t say “I’m here if you need anything.” Make a plan and do it. Say “I’m bringing over dinner sometime this week, pick a day.” or “I got you a gift card to get your nails done, pick a day and I’ll watch the kids while you go.” I wouldn’t turn down an offer of, “I’m free tonight, is it cool if I come over and help you [insert chore here]?”
I’m a perfectionist. I find myself saying sorry for everything. It wasn’t a big deal until I found myself saying sorry for my children. “I’m sorry she didn’t follow instructions. I’m sorry he threw a 5-minute tantrum. I’m sorry she yelled when she was overwhelmed. I’m sorry he touched things on the store shelves.” I have quickly realized if I keep saying sorry for small misbehaviors, my children will think they are something to be sorry about. My children are humans and thus have flaws. Most of their misbehaviors are a result of being under- or overstimulated. It is unrealistic to expect perfection from them or myself.
LESSON LEARNED: We need to teach our kids when to say sorry. Our flaws don’t need apologies.
Here’s the kicker. The grieving of the diagnosis and the mourning of what could have been. One of my first thoughts, when my daughter was diagnosed, was that she might never get married. Silly right? I was worried my one and a half-year-old might never get married. I was projecting my own version of happiness on to my child. We all do it though. We form ideas of who our children could be: the next Emma Stone, a pediatrician, a D1 football star. We use society’s definition of success to define happiness. I looked at my daughter. She was belly laughing while her dad chased her, and I realized she didn’t need my arbitrary goals to make her happy. I no longer care if my children go to college, if they have prestigious careers, or if they are able to partake in romantic relationships. I care that they wake up with a smile on their face and go to sleep proud of who they are.
LESSON LEARNED: Focus on helping our children find happiness, whatever that looks like to them.
Lucy is currently a sassy but sweet 3.5-year-old. She loves barbies, dancing, and singing. She throws tantrums when her schedule gets thrown off or things don’t go her way. She loves cookies and pizza. She can speak in 3-6 word sentences and recently won an award at her preschool! When her siblings cry, she is the first to offer a hug.
Ricky is currently a rambunctious 2-year-old. He amazes us every day with his climbing abilities! We are still waiting on his first words, but we are hopeful they will come soon. He loves riding in the wagon, wrestling his sisters, and playing with letters. He is our biggest cuddler and would spend all day in our arms if he could.
If you see red flags for development, the first person you should talk to is your pediatrician. You can also call your school district’s Early Intervention Network. They are well versed in all types of developmental delays. The biggest advice I can give is that Google searches do not provide the full story. It is always better to have a professional test your child rather than attempting to diagnose by yourself.
Lastly, if you have a child who is diagnosed with Autism, please have Michaela get you in contact with me. I have forged the road of feelings and navigated different types of intervention. I am happy to help anyone through the process.