Last updated on November 10th, 2023 at 08:54 am
Four long months ago, one of my twin boys, Nicolas, was diagnosed with autism at age 4. We knew from infancy that he was developmentally delayed and had sensory issues. (For part one of this story read Twins – Nine Months Apart) Fortunately, we had Early Intervention monitoring for our boys from the time they came home from the NICU, as it is common with preemies to make sure that any developmental delays are noticed early on. But for Nic, the intervention has continued to this day.
Why have the months seemed so long since the diagnosis? No one can prepare you for the flood of emotions that come from such a diagnosis. I ignorantly thought I would not be affected by the diagnosis since Nicolas had always “been this way” (no big regression.) I had suspected autism for months and we had been living the “therapy life” since infancy. But I was SOOO wrong. I cried a lot. I couldn’t even mutter the words, “He has autism,” without bursting into tears. I felt hopeless. I felt angry. I grieved.
I still have my days (or weeks) when I don’t know how I am going to do this. I feel like a total train wreck on this roller coaster of emotions (his and mine) and behaviors. We have good days and bad days. When the bad days turn into bad weeks (or two or three) it can be distressing to everyone in the family. We watch him routinely go into a downward spiral of uncontrollable emotions and actions. As he loses his focus and it becomes difficult for him to use his words and eat his food (he only wants Ritz crackers, yogurt and bananas). Each time he goes downhill, it’s as if we are losing him all over again. And I will grieve to an extent each time.
It affects us as parents as we try to keep calm and be the parents we want to be, but we often get frustrated at the situation at hand. I never know if he will eat his dinner. I never know if I go to the bathroom if he will have scaled the refrigerator in search for his favorite snack. I never know if he will go to sleep tonight or will fight sleep till nearly midnight.
His twin brother, Ethan, also starts acting out during a rough patch. He feels all the stress and is along for the ride as well. He wants to play with his brother, but oftentimes is disappointed when Nic hits him, knocks his blocks down, tosses all the puzzle pieces on the floor or just plain wants to be left alone and Nic won’t stop pestering him. We realize Ethan needs a break from time to time so we try to make plans for him to go to his friend’s house all by himself for a recharge. He is happy to socialize with others.
Respite is much needed for us as parents as well so we can keep going. This past weekend, both boys went to their grandparents house. We had 48 hours to ourselves! It was so refreshing! We didn’t do any housework, we just rested and went out and did new stuff like bowling (for the record, I won) and walk the shops on the boardwalk by the lake. It was nice to NOT think about kids or autism for a couple days. Those refreshing time-outs help greatly and should happen more often than they do.
I always remember that Nic will come back to us; at times, he finds his way again, uses his words, balances his emotions and eats like a champ. We always make the most of these good days to make great memories that will get us through the rest.
April is Autism Awareness Month. Show your support by making the effort to learn about autism and lend a helping hand to a family who is in need of a break. Ask them how you can help and offer specific help if they don’t know what to ask for. Don’t forget about helping any siblings in the family to feel special. Having friends and family who offer support is very much appreciated and it’s the best gift you can give a family.
– Jill Marcum
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