My cousin sent me these questions for a project at school and I found them very interesting. I thought I'd post my answers here.
What has been the greatest challenge/ hardship with raising Punkin?
I honestly don’t know if I’ve met that challenge yet. I think the future scares me much more than the present. That said, other people have been our biggest challenge thus far. We don’t fit into their world and they often don’t fit easily into ours. We are the recipients of a lot of unsolicited advice, mean looks, and snarky comments. And I am constantly trying to balance meeting Punkin’s needs and allowing him the freedom to be a child with the responsibility to respect the people in our community. For example, going out to eat, living in an apartment building, grocery shopping, flying on an airplane, and attending a play have been some memorable challenges. Some of them we have only attempted once. All of those things are stressors on Punkin's sensory system and beyond his ability to handle socially; but they are also things Punkin loves to do and needs to learn how to participate in appropriately.
What do you do to relieve stress?
Sometimes I do silly things like play Facebook games. It’s nice to be able to sit and do nothing at the end of the day – to not be required to think very hard or to be able to do a simple task involving organizing or cleaning, even if it’s in a virtual world. I also really enjoy talking to other parents through blogs. We laugh, cry, yell at insurance companies together, and brainstorm methods of calming our children’s wily sensory systems.
Has your faith played a role in raising Punkin? If so, how?
I am a Christian. I would fall apart without my faith. I honestly don’t know how parents manage without it. style=""> I trust that God will provide for us and take care of us, and it is a tremendous relief.
What are your fears for Punkin in the future?
I worry that I haven’t prepared well enough for him and that he won’t be cared for well enough. I worry that people will be mean to him or that he will be neglected.
What is Punkin’s favorite food?
His favorite food used to be hot dogs. Then for a time it was chips and salsa con queso. Lately it’s been watermelon, which is rather pricey considering the time of year. He generally loves fruit, though, and salad with ranch dressing. And he’s always game for pizza.
Describe Punkin’s condition and how he is affected.
Punkin has Fragile X Syndrome. It is a genetic condition that is passed down on the x chromosome. It can be passed down from either parent. There is a gene on Punkin’s x chromosome that has mutated to the point that it has shut off completely. That means that it doesn’t produce the protein it is supposed to for Punkin’s overall development. In his case it has caused moderate mental retardation, autistic behaviors (but not autism), ADHD, sensory integration disorder, and speech delay. He also has a sleep disorder that has not been specified more than “sleep disorder” and acid reflux. Fragile X is a spectrum disorder, which means that people are affected in all kinds of ways, from mild to severe. Punkin is fairly typical of a boy with Fragile X.
How do you calm Punkin down?
How I calm Punkin depends on where we are and why he is upset. If he is fixated on something and unable to move past it, then a lot of times I will tickle him and talk to him in a funny voice. If he is aggressive or self-abusive, I may put him on his bed and let him throw his stuffed animals until he calms down. Many times he wants to lay upside down on my lap and watch a movie. He calls it jumping.
Do you ever get tired of being constantly surrounded by special needs kids? (I work with special needs preschoolers.)
I get tired. I don’t get tired of special needs kids. I forget that not all kids are like them, though. When I run into a typically developing child, they blow me away with their language and self-help skills.
Does Punkin have a favorite book and movie?
His favorite book right now is The Very Hungry Caterpillar. He can recite much of it. His favorite movie right now (it changes every few weeks) is Despicable Me. He has an amazing sense of humor. He belly laughs every time Vector shrinks the toilet.
Why did you start writing your blog?
I started writing my blog because I needed an outlet for my creative thoughts and because I admired other parents who wrote blogs and wanted to be a part of their community. It’s become more than I thought it would be – I’ve met people from all over the world and we’ve helped each other through this struggle.
Is it easy to maintain friendships when you have Punkin?
It’s harder than it was before Punkin because I can’t be spontaneous. I can’t just call someone up and go out for dinner or meet someone for ice cream at the last minute. I think any parent would feel that way, but being a single parent makes it extra difficult. I don’t think his disability makes it more difficult because I have good friends who don’t shy away from challenges or differences. Many of them work with special needs children themselves. Many parents are not in the same situation I am in and their friends don’t know how to react to their children and it puts a strain on their relationships. Some parents have children with weakened immune systems and are isolated because of that. In my case, I think that if I don’t maintain friendships, it’s because I am not making myself a priority. I tend to always make David the priority.
Will you consider dating anyone?
Yes, but he needs to be a Christian and he needs to understand that if we have children, they will either be adopted or we will run a 50% chance of having more children with Fragile X. That’s a lot for someone to accept.
How important is family?
Our family helps support us in our daily life. It is extremely important.
Do you feel that Punkin is judged by his peers?
Yes, definitely. Many of them are very kind. They still know he’s different and they still giggle at him when he does inappropriate things, but they are generally kind from what I can gather. Most children want to be helpful.
What were some of Punkin’s struggles as an infant.
Punkin struggled first with nursing, then some with bottle-feeding as well. He just had trouble because of his weak facial muscles. Once we got those things sorted out, he had trouble sitting up and crawling. He crawled at age 13 months and walked at 16 months. He gagged a lot and was eventually diagnosed with acid reflux.
How did you find out you were going to have a special needs child?
I was tested in high school to see if I was a carrier of Fragile X and the test said I was not a carrier. However, the paperwork we received was a little “off,” so when I became pregnant I pushed for a retest. It took a while, but I finally was tested at 6 months and found out that had a full mutation of fragile x syndrome and a 50% chance of having a child with the same condition. I think God was preparing me for the news, because I wasn’t really surprised when a month after Punkin was born his doctor called to say his test was positive. Having that time to know what might happen was helpful for me. And knowing from the first month is very rare. I’ve had a lot of time to adapt my expectations, mourn the loss of the “typical” child, and learn how to be the best mom I need to be to Punkin.
Does Punkin have any friends?
Punkin had one very good friend in preschool. They would chase each other around at recess. It was pretty funny. He has one friend his age now. She has Downs Syndrome and they fight like siblings. He had some other friends in preschool who were typically developing, one in particular who was a good helper. He would hold his hand and convince him to do scary things or ask him to please share when he was kind of impatient with all of the other children.
He has other friends, though, who are adults --the janitor at school, for one, and some of my friends who he considers his friends.
What hopes do you have for Punkin in the future?
I hope that he is happy and well protected. I also hope that he can ask for help and other things he needs when necessary and that he has fun. I hope he’s happy.
How do you and Punkin have fun?
We spin around the room really fast and then I throw him on the bed and tickle him and kiss his face.
We also like to go to the children’s museum or out to Culvers. He really likes cheese balls. We’ve also been known to watch SpongeBob all day on Saturday.