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Did you cry?

I sat talking with a patient about a year ago. Her 36 year old Down Syndrome son had just tried to sneak a soda and we were discussing the challenges our children faced as well as what we faced as parents.

“Did you cry when you found out?” She asked me. “I did. I bawled for days. I didn’t know what else to do.”

I felt bad telling her the truth because the truth is, I didn’t. I didn’t cry leaving the developmental pediatrician’s office that day. I left feeling relieved.

“Honestly, no.” I hung my head. “I felt relieved. I spent 5 years feeling like I was failing as a mom that I was so happy to hear that this wasn’t my fault.”

It still sounds self indulgent.

But the truth is, by the time she was diagnosed I had cried a lot.

I cried every time I couldn’t get her to eat as a newborn.

I cried when I knew her very rigid schedule was disrupted because I knew I would spend the next 48 hours with a baby that couldn’t cope.

I cried when her temper tantrums seemed to never end.

I cried when the next one started again 20 minutes after the last one stopped.

I cried when we couldn’t get her to eat.

I cried when she would bite me and pull my hair.

I cried when we exhausted one therapy and we still weren’t “normal”.

I cried when I made the appointment for yet more therapy or to meet another specialist.

I cried a lot.

And I still cry when she struggles.

But the truth is, the tears come from struggle, not a label. These days she is a happy kid. She’s starting to make friends and finding herself in hobbies. She excels in school and radiates with her accomplishments. Her diagnosis doesn’t upset me because it doesn’t define her and it allows us to deal with the tears constructively. And that is something to celebrate.

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. 

In defense of the trophy

Sunday I competed in an Iron Girl sprint triathlon. I use the word “competed” lightly, for really, I finished it. I finished in the top 50% of all competitors, but I was not close to winning or even in the top 100. As I crossed the finish line, a very nice volunteer hung a medal around my neck and I couldn’t have been more proud or more relieved to get that medal. It meant I was done, it meant that my hard work was acknowledged. I earned that medal. I didn’t win it, but I did earn it.

medal

Then I came home and scrolled through Facebook because I couldn’t move anymore and it seemed like the thing to do, and I saw an article being shared about James Harrison (Pittsburgh Steeler) taking his children’s participation trophy and people were applauding him. Then I thought, “I just got a participation trophy” and in my dehydrated over-stressed state, I got a little mad. I thought about all the trophies I had received over the years. They range from participation to first place trophies for multiple sports. I thought about how proud I was when I received the trophy for winning and how receiving the “participation trophy” was nice to receive. It was something I had to remember the season by and how I in no way confused getting that trophy for the first place trophy. Now, concerned that I was just letting my exhaustion get the better of me, I dug out my old trophies and had an experiment. Here are said trophies… (and counter clutter in my house).

trophies

Both are from my 1996 summer swim team (yes, I still have trophies I won in 1996). The big one I received for winning the girls 15-18 100 meter freestyle at the championship meet, the smaller I got for being part of the team. Then I gathered the children. A 6 year old autistic child and a 4 year old and I asked them which one they would rather have. Both said “the big one”. Then I explained why I received each one and asked which was more important and again they said “the big one” so I went one step further and asked if they got the small one, which would be given to everyone, would they think they won something and they both said “no”. And Molly even said “I got a trophy for playing soccer, but I didn’t win” ok, so they get it. Just as I got it as a kid. And in case you missed it, they were giving out participation trophies in 1996 and actually I found one from 1992, so this is not a new phenomenon in an attempt to wussify our children. In fact, a lot of these parents that are praising James Harrison, are also people that received a participation trophy. I know, because I stood along beside them as a team mate.

I continued to think about this over the next 24 hours. I thought about how no one is trying to take the medals I received for running races in my adult life. I thought about how no one is saying that I don’t deserve them. Why not? It’s the exact same thing. I didn’t win any race I’ve ran as an adult, but over half of them I earned a medal for. And, yes, I believe I earned them because I trained for them and fought every step from the starting line to the finish line. I started to think what I hope my kids learn from watching me train and compete. I lose races and I get back up and hit the road or the pool for another workout and compete again. I hope I’m teaching them perseverance and how my perseverance earns recognition. I continued to think about how people say that we are doing our children a disservice by not allowing them to lose. I disagree, I don’t see how complimenting and rewarding hard work, commitment, and team work is a bad thing. Those are all the traits that make people better, not winning. I did not get a job as an adult based on my ability to win races as a child, I got a job because of the lessons I learned from participating.

I think where we go wrong is confusing the terms “earn” and “win”. Winning something is not the same as earning something. Winning is achieving victory, earning is gaining something from work or service (thank you Google). They are not synonyms. Kids can earn a trophy by working hard throughout the season and they can learn what it means to lose and stand tall in defeat. The message is important. The recognition symbolized by the trophy is important. Positive reinforcement is important. I want my kids to know that their work is worth something. That the time and effort they dedicated is important. That even if they didn’t win, they are still better people for trying.

Handling my wandering children

My kids tend to wander. And by “wander”, I mean show no direction or drive to do any task. I’m amazed they have survived as long as they have as much as they don’t pay attention to their surroundings. They walk into objects, trip, and bounce off people all day long. Somehow, in public this just gets worse. I often refer to taking them out in public as “herding cats” but it’s more like “herding a bunch of stoners” through malls and stores. This is why I HATE taking them to the library.

Why, the library as opposed to anywhere else? Well, the library has shelving that is perfect for a little one to wander into and be completely out of site. Charlie once ran away from me and although I did a pretty good job nabbing him before he got too far, there was a split second I couldn’t see him. Scary for a mom of a 2 year old that doesn’t talk. Now he’s 4, and although he talks, I’m not sure how well he would do in a “lost” type of situation. I don’t think he would find someone to help him. He doesn’t do that at home, he just sits where he is and yells for things. I imagine he would do that lost in a store as well.

Molly is a different story. I always assume advice that I’m giving her falls on deaf ears. There is usually little response and the response I get is often a non sequitur to what we’ve been talking about. She did however call 911 and give the lady all the information she was supposed to once. We didn’t need 911 to be called, but that’s a story for another day. It at least tells me that something is getting in. It wasn’t that long ago that Stampy and I were trying to brain storm the best way to talk to Molly about finding help. Who she should talk to or where she should go in the case that she has wandered off or we’ve been separated. Should she stay put or find a grown up to help her? Is there a right answer? Will she even remember what we tell her if she ever is lost? Who knows?

As with most parenting struggles, it’s always good to know you aren’t alone. So, when author, Louie Lawent reached out and asked me to read Momma Don’t You Worry, I was happy to. I found reading this with Molly was a great starting off point for our conversation of “what to do when you get lost”. The book has a catchy tune and Molly was even able to read it herself which allows for her to take interest in the lesson of the story. The story is about a 6 year old boy that wanders off to play with trains and ends up not being able to find his way back, but remembers what his mom has told him to do. Molly identifies with the main character which is helpful when we head out in public and her need to parrot what she hears and reads means that she repeats the catchy rhymes as we head into stores. I have a feeling this is a book that we will be revisiting as Charlie heads into kindergarten and thinks he is too cool to hold my hand as well.

I recommend this book for anyone that needs a good starting off point for talking to your kids about getting lost in public. The author was generous enough to supply me with my copy, but you can find your ebook on Amazon.

Momma_Cover(1)

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. 

 

Dear Lifeguards, I’m sorry.

I was once a lifeguard. It didn’t seem like that long ago, until I started talking to the now assistant manager of our pool and realized I sounded like Grandma telling him about my days as assistant manager at the pool when he was five years old. Ugh. I’m older than I like to realize. So that being said, I feel like I need to apologize in advance to the lifeguards at our pool this summer.

Dear Lifeguards,

I was once you. I was once 19 and fancy free. I had lots of opinions and little experience to actually back them up. I’ve lived your carefree life and I know what irks you and makes you roll your eyes. In no particular order, I apologize in advance for the following things.

1. We will be there any day that does not have lightening. If it’s raining, we will probably be there and I’m sorry. However, I can’t keep my kids in my house and our backyard just doesn’t cut it when they can go to the pool. I also need to get out. Staying home makes me realize that I have carpets that need to be vacuumed, dishes that need be washed and a bathroom that is need of cleaning. None of these things will get done no matter what, so I might as well not have to look at them.

2. Charlie will run on the pool deck. I will tell him to walk but he will be the kid you yell at all summer long. 

3. Molly will scream in fear for no apparent reason. Don’t worry, she won’t get her head wet and is extremely cautious so the chances of her going under are minute however her voice will be loud. 

4. One child will insist on being in the baby pool, the other in the big pool. This will mean I will have to stand at the gate and divide my attention and yell at them from away. It also means that I might not actually be in the baby pool gate with my child as your rules so apply.

5. Speaking of rules, I grew up there, I life-guarded and managed there, I was on the swim team and my face is all over the club house in many picture collages, I didn’t follow them back then, I may not now. 

6. Molly will not flush a toilet. She doesn’t like the noise. 

7. One of my children might be naked. It’s just how it is.

8. I might talk to you about the old days. Thank you in advance for being polite.

 

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.