Tag Archives: family

Fair

Fair.

It seemed to be the theme for the day.

It started with a patient I was working with that has been battling Parkinson’s. After he informed me that he was going to be disabled for the rest of his life, I just responded with “I know, it’s not fair”. He shrugged and said “it’s life”. Seeing where the conversation could go, I said “well, the phrase isn’t ‘life is fair'”. We left it at that and continued on with therapy.

Skip ahead a few hours and I for some reason thought my whole family would enjoy a Friday night at the town carnival. Now, to be clear, by the whole family I mean “the kids”. I’ve been here way too many times to enjoy the scene as an adult, but to be fair, for a kid it’s pretty fun. 

It’s fun, but it’s loud, it’s crowded, and there are a lot of lights and things to look at. Hell, I get overstimulated. But for a 7 year old autistic child heading home 30 minutes after bedtime, it was way overstimulating. This was as lose lose situation for us. I knew the carnival would bring tears but I also knew that not going would bring tears. What brought the tears on started was the fact that her brother choose to get a fancy you gun that made lots of noise and lit up while she chose to get cotton candy, which he was unable to eat. Charlie would not shared his fun new gun and I told Molly she couldn’t play with it until she wanted her hands. We were 3 minutes from our house. In that 3 minutes we got to how it wasn’t fair that her brother’s peanut allergy was ruining her life because she couldn’t play with his fun because she ate cotton candy. (If your confused, welcome. Pour some wine and join my team). Then came the doozy…. It’s not fair that her friends get to have fun and we never do anything fun. Remember, on our way home from the carnival, ate cotton candy.

Needless to say, the night went downhill quickly. When things calmed and I held my Chardonnay, paying bills at 9:00 PM, all I could think was “shit, none of this is fair”.  It’s not fair that she can’t have a good time, having a good time. It’s not fair that he has to miss out on delicious food and events. It’s not fair that he gets blamed for ruining things because he could die and wants to be included. It’s not fair that we are raising 2 difficult children. It’s not fair that he will go under anesthesia for the third time in 5 years. It’s not fair that no matter what we do, big compromises have to be made to keep peace or someone alive. It’s not fair that I feel like several 10 minute crying fits a day is “getting better”. Life isn’t fair. 

Learning to trust my child around food

“I’m just looking!”

That was yelled at me in a disgusted tone after I tracked down Charlie and reminded him he couldn’t eat a piece of the animal cake served at the party.

I felt awful. I had went around and around with him that he would eat only the cake I brought and he seemed to understand but I still hovered and didn’t trust him to do the right thing. As my good friend pointed out “He’s 4. He can’t be trusted”. It’s true. It didn’t help the guilt that I felt.

Here’s the thing. As a food allergy parent, I HAVE TO TRUST MY CHILD. I need to know that he will make good choices or I will probably go insane. Quickly. I need to know that he is listening and he understands the severity of his condition.

I’ll repeat that….. my four year old needs to be responsible for his life.

Although I have a wonderful community that keeps an eye out for him and does everything in their power to keep him safe, Charlie still needs to be the person that knows what he can and can’t put in his mouth. Or up his nose for that matter. He needs to know to ask about ingredients and he needs to know what ingredients he can’t have.

In some ways we are lucky. Charlie had his first allergic reaction at the ripe old age of 13 months. He doesn’t know what life is without an allergy. The rules and habits we’ve established are all he’s ever known. He doesn’t long for his favorite candy bar or ice cream he can no longer eat. He won’t know what it is like to go somewhere without his epipen. He will always be the kid with the “special snack”. That’s just his life.

At the age of four, he knows he can’t eat peanuts. He knows how to administer an epipen. HE KNOWS HOW TO SAVE HIS LIFE. The amount of responsibility and trust that we put onto that little person is astounding. A four year old needs to have the self control of an adult, and more depending on the adult. (I’m looking at you, Stampy).

I think that is one thing that is majorly overlooked when we talk about these “food allergy kids” and “food allergy parents”. We miss the amount of trust and responsibility that these kids have at such a young age. And the amount of trust that parents put into their kids at such a young age.

It’s not because we want to or even have to. No one is making us trust our children or dole out this responsibility to them, it just comes with the territory. It comes with the epipen. It comes with the allergy.

The art of solo parenting

Last week I got the flu. Seriously, full on fever, aches, cough, chills and everything else that comes with the flu. It was awful. Thankfully, it hit the hardest over the weekend which meant, I could actually be sick. Yup, you heard that right, this mom was able to curl up in bed and not be seen unless someone was bringing me medicine.

How you ask?

The answer is easy, living it is hard… solo parenting.

I never like to refer to my husband and I as “single parents” because we aren’t. We have each other, we are partners, we can do things alone and not necessarily have to find a babysitter. The problem is we are more like team mates for a tag team wrestling match than actual partners. We are only together on the weekends and one week day night for dinner.

That’s it.

The rest of the time it is one parent and two kids. One parent getting everyone dressed and out the door, one parent shuttling everyone to soccer practice, one parent attempting homework and dinner before bedtime. One parent. All the time. It’s exhausting because usually that one parent has also put in a full day’s work. (yes, I realize that many people do this, some don’t even have the help of a spouse…. I’m in awe of these people) The great thing about it is that we both have to do each task. Some days I get the kids to school, some days Stampy does. Some days, I am wondering why my kids just won’t go to bed, some days Stampy seems to have the kids in bed and the dishes washed before I get home from work. (I’m also in awe of him on these days.)

Some days it’s rough. No two days are the same, it’s a constant switch which makes it hard to get into a routine. It’s hard to schedule therapy that everyone can attend when you work opposite shifts. It’s hard to schedule your own appointments with two kids in tow. It’s hard to work as a united front when you are always running solo. It can also lead to more solo parenting on the weekends as everyone runs around like crazy people trying to get things accomplished that is just nearly impossible without an extra set of hands. There are the times you just want your family together as a whole.

Our schedule, although it is not ideal, has given each of us a freedom. A freedom to meet friends out for dinner, a freedom to go away for the weekend, a freedom to go to the gym, a freedom to get sick for the fact that we each are perfectly capable of taking care of our kids in all types of situations. There are no notes left to instruct how to make dinner or where pajamas are. I know that everyone will be bathed and no one will be at 9 PM. I won’t be called over a trivial issue while I’m trying to eat my first peaceful meal in two months. I know that I can utter the words “I think I have the flu, I’m going to bed” and not give a second thought to what is happening in the rest of my house.

And that is a wonderful thing.

Everything changes

This week was a big week here. Both kids are starting to show that they are growing up. Molly got on a school bus and rode to kindergarten camp and has her first loose tooth. Charlie decided he is now going to wear underwear. We are officially a house with “kids”. No more babies, no more toddlers, we have kids.

Part of me is super excited to embark on this next path. Full school days and no more diapers??? Could it be? We’ve reached the point where we have time to get something done and I don’t have to feel guilty as my child runs by with a diaper down to his knees. (Honestly, after five years of changing diapers, I’ve become lazy). We are on the road where I no longer feel like I’m herding cats into the pool and everyone is carrying a bag. I’m not going to lie, I LOVE IT. However, I see them growing and I want to cherish each and every moment now. I want to hold onto who they are and enjoy it because I know that soon it will be Charlie loosing teeth and Molly will be running off with friends at the pool, only coming back to me for ice cream money.

Wanting to enjoy this moment in time made me realize that I’ve had a parenting shift. Not that I wanted to rush through the babies years, but like almost every other parent, we are waiting for the next milestone. When a baby rolls, we wait for the crawl. Once they crawl, we are excited for them to walk. There’s always a next step. First baby food leads into first finger foods and self feeding. I spent 6 long months waiting for Charlie to sleep through the night. Each of these milestones are exciting and they happen fast. I thought I would never forget their stats at certain ages or the dates they crawled, walked, ate, slept, etc and now I can’t even remember (nor do I try) when these things happened. I just think, “eh, it happened”. We waited impatiently, then the milestone happened and before I could truly enjoy where we were, I was already thinking “what’s next?”.

I once had a yoga instructor tell the class that we can’t enjoy our present if we are too busy holding onto the past. I think the same goes for looking forward into the future. The past five years have taught me that the little people I put to bed tonight are not the same people that will wake up in their beds tomorrow. They will be a day older, a day smarter and a day more advanced. So instead of trying to remember each “milestone” or look forward to the next, I plan to take this moment and enjoy it because everything changes.

Starting Again

Today we started over again. 

We have been on and off the therapy bus several times. We’ve been through testing several times. I don’t know why I thought today would be different. Maybe it was because we were going to the big name institute that has credentials and multitude of services and reputation. Or maybe it was just because I’m in need of answers as we travel down this road again.

I didn’t get them today.

What we got was the same thing that therapy always starts out with. An interview. Questionnaires. History. Imagine telling a perfect stranger all of the worst possible character traits of you and your child, retelling your struggles and remaining neutral about them as if you were giving a list of what you had to eat that day, going over and over your child’s issues, and your less than perfect parenting moments. Now, imagine doing it for the third time. 

It’s hard to do. It’s exhausting. For some reason, I hadn’t planned to do it today. I don’t know why. Maybe I should have asked what the appointment would entail when I set up the evaluation. Maybe I should have looked more into what we were getting involved with. I was am so desperate for answers that I wanted one today. I wanted for us to go in and say “our problems are….” and have them ask a few questions and BAM! treatment plan, diagnosis, something. I wanted information. I wanted hope. What I have is two more appointments. Our observation appointment, which is basically what it sounds like, they observe you interacting with your child (not at all awkward or unnatural) then the “parents only” appointment where they tell you all the disturbing things about your child and how they plan to fix them. 

Two weeks. Two weeks until I need to mentally and emotionally prepare. 

I’ll need to get another box of wine. 

 

We made a decision

For almost two years now I’ve had a little noise in the back of my head saying “Kennedy Krieger”. I usually hush it up and go back into my denial world. I’m usually up front and open about “we need help” and “things aren’t right”, but somehow making the phone call to the children’s hospital seems extreme. It means we’ve hit the big time. I’m not totally ready for the big time.

Almost two years ago when we started with behavioral therapy, we were warned at that point we might not get all we need through local services. We weren’t promised cures, just a good ole fashion try. We were willing to go the least intensive route. Local behavioral therapy, local occupational therapy. And why not, even the school psychologist couldn’t give us 100% diagnosis. Everyone hovered over autism, PDD, anxiety disorder but were in agreement that something was off and most likely Molly was not a case of pure Sensory Processing Disorder. But, then again, she could be. We had a 3 1/2 year old and 18 month old. Least intensive seemed to be what would suit our family best.

We aced behavioral therapy and felt we could breathe. We plateaued in progress in occupational therapy. We started therapeutic riding. We couldn’t deny her improvements. There were many. She was becoming more social with peers. She was wiling to get on her bike. She occasionally would eat something other than pasta. She started using the bathroom at school. Occasionally. We also couldn’t deny the massive behavior problems that continued. The unwillingness to break from routine. The violent, and I mean violent, tantrums. The unwillingness and inability to be independent. The denial of what her body was telling her.

For those of you who don’t really know what Sensory Processing is (and I realize I’ve never really explained it here), it’s a incorrectly wired nervous system. Problems arise in hearing, smelling, tasting, feeling, seeing, balance and internal regulation. The Sensory Spectrum has a great picture, and article explaining SPD here. With Molly, we deal with noises, with balance (proprioception) and internal regulation mostly. And although it seems small, the anxiety and need for perfect routine are enough to drive you crazy. Then we deal with the fact that she doesn’t know she’s hungry, thirsty, hot, cold or any other body sense you could think of. Ever tried to get a picky eater to eat that doesn’t think they are hungry??? It’s impossible. We eat noodles every day. She becomes “hangry” quite often.

So here we stand. We are two months out of going to kindergarten and six months into some of the worst behavior problems we have seen in a long time. Each time we get through one batch another creeps up and we have more defiance, more stubbornness and more battles over every. little. thing. 

Our social worker thought we needed to go to the big guns. We were past what she could give us. We had done everything on their treatment scales. What we need is not here in town. It’s time to call Kennedy Krieger. However, knowing that I am in denial, she also gave us a few names of in town people that might be able to help. Might. I am tired. I am tired of going from therapist to therapist. I am tired of resolving and living through melt down after melt down. I’m losing patience. Fast. It took a week of deliberation between Stampy and myself but we agree. We need it. Our family needs it. Our daughter needs it.

I make the call tomorrow.

Wish me luck.

 

Imperfectly Perfect

“Every mom wants their child to be perfect.”

Those words felt like a punch to my gut. Anymore these days, it doesn’t take much for people’s comments about parenting (or how I choose to parent) to really get me riled up. I am who I am and I make the best choices I can make in the situation I have to make them. For some reason, this statement made me think. 

I don’t have perfect kids.

I don’t want perfect kids.

I am the mother to one child who had to have his urethra reconstructed (he was born not perfect) and now has a malfunctioning immune system. I have another child who has a malfunctioning nervous system and digestive tract. I know a lot about imperfection. 

It’s those imperfections that make us a perfect family. 

We cry together, we flip out together, we laugh together. We all avoid overly loud places that Molly can’t tolerate and restaurants that will easily send Charlie to the hospital. Molly teaches people how to use an epipen and Charlie hugs Molly and tells her everything is OK when she can’t quite get it together. My kids learn compassion and fairness. They learn that everyone has a bad day and that sometimes you have to wait your turn.

More importantly, it’s those little non-perfections that make those kids MY KIDS. It’s what makes them unique. It makes memories and multiple hospital issued baby blankets. It gives us great little personalities. It gives us little fighters.

It is what makes our family imperfectly perfect.