Special Needs Spotlight Then + Now || Wyatt

Hey guys! Are you loving these Then + Now Spotlight posts? I am. This is Wyatt and I just reposted his spotlight just a few weeks ago and people were specifically asking if I could do a Then + Now post on Wyatt and his family. Thankfully his mom Liz agreed and here we are. You can read Wyatt’s original spotlight back in 2015 here. Enjoy!

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Miggy: Welcome back Liz and Wyatt! First, let’s start with a brief overview–can you remind us of Wyatt’s diagnosis and how does this diagnosis or condition affect your son and your day-to-day life?

Liz: Hi Miggy, Thanks for having us again! Wyatt (9) has severe (Anaphylactic) food allergies. He is anaphylactic to peanut, tree nuts and sesame seeds.  For more information on food allergies see here.

Miggy: It’s been a number of years since we first did the spotlight on Wyatt, in the years since what has changed the most about him during this period of time? Any unexpected highs or lows you’d like to share?

Liz: We have had some changes in our lives. Last time we spoke, Wyatt was in a clinical trial for peanut  desensitization with Oral Immunotherapy (OIT). We successfully finished the 3 year program in 2017. During our 1st year following the treatment, Wyatt had an anaphylactic reaction. We got his blood tested to see what was going on. The various tests came back inconclusive. During the following months, Wyatt started to complain, cry, hide when it came time to take his peanut dose. Then he started to throw up after nearly every daily dose. It was becoming harder for us to get him to calm down before his dose time. We also noticed he wasn’t growing, gaining weight and was always getting sick. We decided he needed to stop the daily peanut dose. This was really hard for me. I had such high hopes that he would be free of one food allergy.

Currently, it has been almost a year since we stopped the daily maintenance dose. Wyatt, now 9, has grown, maintained weight and is super happy. He also isn’t getting sick as much as he was. We feel we made the best decision at the time for our child. Maybe one day we will revisit OIT again. For now we will continue to aggressively avoid food with his allergies.

Miggy:  What has changed the most for you personally about your identity as a special needs or allergy mom? For example, have your general views on disability or special needs evolved, does your caretaking look different than it used to, and/or do you feel more or less personally balanced?

Liz: I feel a little less stressed and less uptight about everything. I know I don’t need to be next to him 24/7. Go back a few years and I didn’t want to leave his side. I wanted to watch everything that went past him to make sure it was safe. Don’t get me wrong, I would sit next to him all day if I could but, I know its okay to let him be.
Miggy: I’m curious to know if you have noticed a shift in the relationships or dynamics in your family over the years as well that might be directly or indirectly related to Wyatt’s allergies? For example, sibling resentment, marital challenges or perhaps the ties are stronger than ever?

Liz: You know, I noticed that sometimes the other 2 children get upset because we can’t eat out at certain places, get desserts and stop at fun candy stores. We have tried to keep them all the same. It is hard when you have a child that needs a little extra support.

Miggy: I still it important to find humor in our daily lives and LOVE hearing all the funny anecdotes related to disability and special needs–anything recent funny stories you’d like to share? 

Liz: We moved to a new school this year for 3rd grade. Wyatt started off sitting at the peanut free table. After a few days he asked if he could sit with the other kids, because the peanut free table was full of other nuts. I asked him a few questions to see if he was ready.

1.What do you do if the child next to you has a peanut sandwich?
-Wyatt: I will move away if I can.
2. What do you do if they say we DARE you to eat this?
– Wyatt: No thank you, I don’t want to go to the hospital today.
3. What if they wave peanut sandwich super close to your face?
-Wyatt: I will say, please stop, I don’t want to die today.

This just cracked me up and made me super proud of him. He is totally ready to sit at the other table now. And so far, everything has been working out.

Miggy: It’s really hard to see the lessons we’re being taught when we’re in the thick of it–often we need time to give us perspective we don’t initially have. So what do you feel like you’ve learned in the past few years of dealing with Wyatt’s diagnosis that perhaps you didn’t see at first?

Liz: We have learn to really go with our gut. So many times we would over think a situation. We would give him medication and wait and watch. When we knew we should just give him the Epi pen. It’s hard to know what is the right thing to do in some situations. I would say we are still learning. An example of this was a year ago. We were on vacation and stopped to eat at the same road side shack we have before. Wyatt took one tiny bite of the hotdog and all the sudden went pale, put his head on the table and said he felt bad, his throat felt funny and his belly hurt. We kept an eye on him for a few minutes and decided we need to head to the ER. We knew the ER was 20 minutes away so we gave him Benadryl and drove as fast as we could. Before we got to the ER we had to pull over and give Wyatt the Epi because he wasn’t looking too good. Once we got into the ER room they set him up they monitored him for the next 4 hours. This was the first time that we saw something different than his regular symptoms. This was also the first time we had to give him the Epi pen. He has had an Epi pen before but always administered by his doctor. We realized we really have to be on top of everything he eats. You start to feel safe at certain places and you let your guard down. You can’t do that, it needs to be on 24/7.

Miggy: Lastly, is there anything else you’d like to add about identity, family or your views in general as they relate to special needs or allergies?

Liz: You know, everyone has their own take on what’s right for them. I would like people to understand food allergies and take them seriously. This is not just a fad, it is our life and we need to protect Wyatt the best we can. We always say you have to live our life to understand food allergies. It’s a never-ending challenge. People don’t understand how much time I spend reading labels, talking to his school, sports, church or just another parent about what we need to do to keep him safe. The more we talk about his allergies, the more others will understand.