We have a new Featured Parent to introduce you to!
Fun and Function: Who are you and your kids?
Zoila Nusbaum: We are Zoila and Ian Nusbaum, and our kids are Gabe, 7, and Zeke, 5.
FF: What is the nature of their special needs?
ZN: Both of our boys have Aspergers, ADHD, and SID.
FF: Do you have a blog?
ZN: Poly Hobby Mommy.
FF: What would you say is your biggest challenge in raising a child with special needs?
ZN: At first glance, you see intelligent, fun loving, affectionate boys. It’s the daily struggles that can be the hardest. Getting dressed, taking a bath, aggression, extreme sensitivities… Some days you can predict what will upset them, other days you don’t know what will upset them. The screaming and tantrums are daily, so you learn not to take it personal. It can be hard when others expect more from them. The perception that I am an easy mom because I can’t control their behavior can be frustrating. A lot of us who have children on the spectrum face having to defend our kids, whether from medical staff who refuse to listen to us or the clerk at Food Lion. They can be pretty exhausting at times. They rarely sleep the night through and wetting their bed and upset stomachs are constant issues.
I am raising the tortoise and the hare. Gabe is my hare. Gabriel is my extremely hyper child. Sitting still is virtually impossible. He’s also overtly social, but this brings him problems in a lot of ways. Most people are more reserved. He randomly hugs strangers and if he accepts someone, they are friends for life. He has a hard time telling if someone is playing with him or making fun of him, so he takes rejection really, really hard. Pain is a weird one. He may scream if he is irritated but if he needs stitches he is unfazed by the pain. He once pulled out 4 teeth before they were loose. Because of all the sensitivities, it makes him clumsy and it can be hard to tell what is real pain or not, as he gets hurt a lot. It was much harder when he was younger. He was colicky and barely ever slept. I knew when he was about 8 months old that something was wrong. He would stare past me, or he would try to punch and bite me for no apparent reason. Between 2 and 3 years of age, it was the roughest. I was covered in bruises, had black eyes, or even some bloody lips. When he was 4 he was diagnosed with ADHD, and by the time he was 6 he was diagnosed with Aspergers. We are still having lots of problems.
Zeke is my Tortoise. Ezekiel was about 16 months old when I realized something was wrong. I remember questioning myself a lot with him. He rarely wanted to be held. He was very content being by himself. He only wanted to be hugged when he wanted, so it was very hit and miss when I would get to hold him. If you moved or interrupted him, he would scream and cry. He started talking at an early age, but lost it by the time he was a year old. He stopped eating all foods except peanut butter and rice. I thought he was mimicking his brother. It wasn’t until he started preschool that he stopped giving us eye contact and stopped talking again. I knew that I had to get him seen. He does a lot of the same things Gabe does, but he is more introverted. He would be by himself all day long if you let him. Zeke gets consumed in computers, the wii, and trucks. He has a hard time with sounds, lights, clothing, shoes, and a huge aversion to water. Gabe would spend hours a day in the bath, where with Zeke, I was lucky if I could bathe him every 2 weeks, and even then would have a huge battle. He has a really big issue with balance. He has had more head injuries than I would like to admit.
They are so much alike yet extreme opposites. The plus side is that they both have Aspergers, and so they “get” each other. Even when they think they hate each other, they get over it so quickly. In many ways I am glad they both are on the spectrum. They teach each other a lot, but most importantly how to give and take, how to be empathetic and compassionate towards each other.
FF: What would you say is your greatest joy in raising your children?
ZN: They are really amazing kids. I love their thirst for knowledge. On any given day, the boys have theories on black holes, the earth, and the universe. They have such an imagination. They invent, build, and tear up the house. While most moms might get frantic by their huge amount of mess, I enjoy it. I love watching them explore. They are so very blunt, honest, and literal. It really makes it easy to be honest with them. I really love their matter-of-fact ways. It actually seems easier in so ways. I absolutely find them fascinating.
FF: What would you say has been the biggest help you in raising your children?
ZN: Once they were diagnosed I began my research, finding support groups, homeschooling, and the homeschooling support groups. I’ve learned a lot through OT, PT, ST, and gluten free diets. But the most important help is patience. I pray for patience on a daily basis. I don’t mind most of their antics. It’s the screaming that throws me for a loop. You would think that I would be used to it by now, but honestly, I’m not. It doesn’t take much for my ears to ring and then I am seeing stars.
FF: Give us one tool you would hate to live without.
ZN: Patience. This is my most precious asset and I must remind myself to practice it. I am not perfect at it, but with kids like this, it is vital.
FF: If you could give one piece of advice to another parent who’s child has just been diagnosed, what would it be?
ZN: Research and connect! There are a lot of wonderful families out there. Patience and respect. Just because you may not get what your kids are talking about doesn’t make it any less valuable. Figure out their triggers so you can help them through it. Don’t forget to be flexible and let loose with them.
Zoila, thank you so much for taking the time to talk to us and all the readers here at Fun and Function.
If you would like to be a featured parent or professional, just let me know!