September Blues

I have been a bad blogger these last weeks of summer. I apologize.

There has been so much going on around here, and it has been so stressful that I have not wanted to really feel what was going on through writing. For me, when I write it is when I feel all the emotions that have been brewing.

My friend Gina encourages me to write, and I am very thankful to her. I guess I am ready to write now :-)

The big news is that school started! Can I get a Wahooooooo!? Amanda and Jessica go full days, and Jack goes 4 mornings a week. I will tell you that I sweated out that first day with Jessica. She was at a new school, and I was waiting with baited breath for a crisis call from the school. Nothing came though. It wasn't until the 3rd day that I got an email from Jessica's teacher. She had had a bit of a meltdown after lunch and started playing the "I'm allergic to gym" card.
All in all her first week went well.

Amanda is another story. Dealing with her depression is harder than any "medical" issue she has ever had. When her shunt malfunctions, there is a clear way we handle it. She has surgery. But now, when she feels unsafe there is nothing clear at all. All we can do is try and keep her safe. And make things around her easier.

Jack started soccer this past Saturday. He had been very excited for weeks about it. When we got there saturday morning, he was very anxious and got angry. He wouldn't play, even when he found out his best friend from school is on his team. He cried a bit, and I felt bad. I felt guilty because I was angry he wouldn't just do what all the "typical" kids were doing, and I felt guilty for putting him in a position to have this experience.
The whole drive home I was very upset and wished that my kids were the same as other kids.

I should have known this was going to happen after what we went through with t-ball over the summer. And with Jack it is different. Jessica and her dance class was hard, but it was endearing and funny because of who she is. With Jack, I expect more out of him because he is the closest I have to a typical child. It's a disappointment for me everytime he doesn't do something that other kids can do. It is very unfair, I know....but it's hard not to hope that Jack will come out of whatever he is going through.

Enough

I am really frustrated right now. I think most parents of special needs kids probably reach a breaking point every once and a while. Don't get me wrong, I love my kids but I am at the end of my rope. I just wish my kids could experience things like all the other "typical" kids. Now I know that there are those out there that say all kids have rough spots and throw fit etc. There is one major difference though. Life is ALWAYS like that for my family.

My husband and I took Jessica and Jack to the town pond today. Today was the big swim meet, that they do every year. We have been talking about it to them for a few days, so they would know what to expect. There would be different races, and they would get medals.
Sounds fun and easy, right?

WRONG.

Jessica started out great by doing some warm up exercises with all the kids (about 30). Jessica doing jumping jacks is quite a sight to see, and I actually had some high hopes for the day. Jack did not warm up to the idea of racing, and I was fine with it. Until he started throwing a fit because he was mad at himself for not racing.
Then Jessica started screaming. Just full on screaming for no reason. All the parents looked at me like I was some horrible mother that could not control her kids. My husband was somewhat useless because he was running on 2 hours of sleep, and couldn't understand what was about to happen.

Jessica screamed as she ran across the beach and into the water. Jack then started to melt down again. I was trying to bribe him as Mike tried to get Jessica to sit down with us.

Jessica eventually settled down, but decided she wanted to to the 5/6 year old girls balloon race. This is a race where you have to get your balloon across the finish line in the water without touching it. Basically using your belly and feet. Of course Jessica carried the balloon the whole way. And then it popped. I just knew that this was the end of the line for her....and I was right.

There are so many other things that happened in this short 60 minute time span that I could write about. But I have had enough, and don't want to relive the looks from the other parents and the look on Jessica and Jack's face. I don't want to remember that Jack got himself so upset that he couldn't breathe.

Tomorrow is another day, and we will start over again. But for today, I have had enough.

Dreaded Thursday

So today is the dreaded Thursday. This is the day that I have to fight with both my girls to get them to go to places they need to go.

Amanda has summer school and then a visit to our local youth center to meet with her mentor. And of course, Jessica has dance class.

The morning started out the way it usually starts out. An argument with Amanda about going to school. She doesn't want to go. Um, Duh. Tell me something I don't know. So there is some back and forth bickering that goes something like this:


Me: Amanda, get up you have to get ready for summer school.

Her: I don't want to go!

Me: I didn't ask you what you wanted...you HAVE to go.

Her: I am not going.

Me: Yes you are.

Her: No I'm not.



You get the point.

This went on for about 20 minutes, before I told her she could stay home from either school or the youth center, but she still had to get up and get dressed.

She of course chose to skip school. She already went once this week, so I was OK with it. It is summer after all.


On to Jessica. I wasn't sure how today was going to turn out, because last week wasn't that bad. She went with little whining last Thursday, which was big relief to me.

I should have known this week would go a little differently.

In my most excited voice (you know the one you reserve for when you announce you are taking your kids to Chuck E Cheese), I said:

"Jessica guess what? It's dance today."


To which she replied: "NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO"
and promptly ran out of the room.



To keep this short, read my "Thursdays with Jessica" blog from last week, and you will pretty much understand what happens after that.

So we get to dance class, and find out because this is the last class of the session parents get to stay in the studio and watch. Now at this point I am torn. Do I want to see how she really does in class, or do I want to just keep with my already formed opinion that she does well and likes it? Then there is the whole other idea that if she acts out, all the other parents will see it.

Being a parent is hard. Did I mention that yet?

So I buckle down and decide I will stay. I will not however, sit on the floor like the other parents. Afraid that I would make a fool out of myself trying to roll myself up after 75 minutes, I got a chair from the hallway.

The class starts out with ballet at the bar. Jessica of course stands the opposite way all the other girls are standing.
I have to say, she did make some effort to try and do what the rest of the class was doing. The teacher rattled off all those french ballet positions, and most of the kids knew what she was talking about. I was impressed.

Next was jumping, or at least that is what I call it. I know that there was a fancy name for it, but at that point I was paying more attention to Jessica trying to get naked at the back of the line.

With her arms folded, she started to complain that she was itchy. This is her 'go to' avoidance move. It quickly then slid into her 'my ankle hurts' ruse. By the time she got to the front of the line, she was just angry. I will give her credit though, she jumped. With her arms folded, and a grumpy face, but she jumped.

Next was tap. Now this was a sight to see. She mainly looked in the mirror and made funny faces at herself. She was quite interested at looking up close at her teeth. And at one point she licked the mirror. I prayed that none of the other parents saw that.

During the tap part, she decided she needed a potty break. I took her into the bathroom, where she proceeded to get completely naked. I tried to stop her, but she freaked out when I told her she had to keep her clothes on.
I was able to get her dressed, but not before she looked at me and said, "Mommy, I have cute boobies."

Calgon take me away.

The jazz portion of the class was actually pretty good. She seemed to like this the most, and was able to follow the directions very well. At the end, Miss Angie allows the girls to have a "free dance". They get little sticks with ribbons on the end, and dance around like rhythmic gymnasts.

This was really cute, and Jessica ran around, danced, and shook her hips like a pro.

Overall, I was very proud of her. Although there were some points when I thought I clearly cannot enroll her in the next session. But I will. And we will fight, and she will make funny faces, and enjoy herself.

Next time I will remember to bring my camera though.

We have been having some hot humid weather here in the Northeast the past few days. Luckily, it has coincided with my husbands days off, and we have been taking the kids to our town beach. The kids have been having a fantastic time. They love the water and don't want to leave, even after we have been there for 6 hours.

On the third day I woke Jessica up to tell her what I thought was good news....by was I wrong.

Me: "Jessica, we are going to Stevens Pond today wake up!"

Jessica: "NOOOOOOOOOOOOOOOOOOO! I want to go to Hello Kitty Land!!!" (followed by Jessica meowing like an angry cat)


This was the beginning of a 90 minute scream/meowing/hissing-fest. I don't think I have explained yet about what happens when Jessica becomes "Mrs. Cat".


It happens a lot when she doesn't want to do something., or get anxious about something. She starts crawling around, and hissing. She has been known to eat out of our cat Sabrina's bowl, to try and scratch whiskers on her face with her fingernails, and to eat grass. You know - basic kid to cat behavior.

It really surprised me that she acted this way about going to the pond. I have never had a problem with Jessica not wanting to swim. It really was a knock down drag out fight too.
At first she was just upset about going, and then she said she needed a new bathingsuit. For some reason the one she has been wearing was not good enough. Of course it has been good for the 102 times she has worn it since she got it for her birthday. And I should mention her birthday is April 7. Meaning she wore it when there was still snow on the ground.

I got the bright idea to see if I could find one of her Hello Kitty swimsuits from last year. I had no idea if it would fit her, but at this point I would try anything. I did eventually find a stylish baby blue HK bathingsuit. I took one look at it, and knew it wouldn't fit. I was hoping that she wouldn't notice, wear it, and go quietly to the pond. (Yeah Right!)

Jessica put on the bathingsuit, looked up at me and very sweetly asked, "Mom, can we leave now?"

SERIOUSLY?????? All it took was a too small HK swim suit. Hallelujah.

A Brave Boy

My little boy is growing up. Minute by minute, day by day, he is finding his way through this world.

Jack is 4 1/2 years old and as I watch him get bigger, I wonder how long he will still let me hug and kiss him. How many times he with indulge me while I hold him on my lap and whisper in his ear, "are you my best boy ever Jackie boy?"

This summer I have seen a big transformation within him. Although he is my most "typical" child, he still has some obstacles to overcome. There are his receptive language skills that he struggles with, as well as his sensory deficits. But day to day, I see him fight with fear of the unknown. I supposed this is a normal thing for a 4 year old to go through. But to be honest, I have no clue.


I have been trying to build him up by placing him in activities like karate and t-ball. Karate is just something that he really loves, and feels very positive about. He wakes up every morning asking if it is Wednesday (karate day). We have a private joke where we call it "karatay", and it makes me laugh everytime he says it that way.

When he shows me his "moves", it makes me so proud of him. He also has taught me some valuable karate lessons. The first one was when his sister Jessica was in a particularly grumpy mood, and kicked Jack while yelling "HI-YA!".

Jack immediately replied, "Jessica! Master Mitchell says no HI-YA's because HI-YA's are dangerous!!!!"

He has also made some great strides in the water too. When we first started going to our town beach in June, he was so scared of the water. He would barely go in so that his ankles were covered. Slowly, over a couple more visits he would wade in further. He would tell me that he was trying to be a brave boy. I was so proud of him. Now he "swims" out to the ropes, and dunks under water. This is a HUGE deal for him, and he knows it.

I guess the moral of this story is to always expose your children to activities and situations that you think they will enjoy. Power through the classes and visits that don't go so well. Continue to talk to your children (as much as they will tolerate) about the activity. And hopefully in the end they will come to have fun and excel.

There are no "Days Off" in Mothering

My oldest daughter Amanda has physical illnesses. She also has a mental illness. There I said it. Out loud to people who don't know me. Thanks to some great new friends I made this year, I am not ashamed to admit that my daughter has depression.

Amanda has been hospitalized three times this year, and it has been a very hard road to travel. She is doing better, and I actually see happiness in her eyes.

I have done my very best to keep her busy this summer, in hopes of warding off those "blue" days. And by blue days, I mean the ones where she wants to put a bag on her head.

She is in summer school 2 mornings a week, sees a mentor at our local youth center once a week, and of course has her therapist. During the rest of the time, we are at our local pond, or book store, or on a day excursion to NH.

This week I slipped up. I became a little depressed myself, and didn't make much of an effort to come out of it. This affected Amanda. For the past 3 days she has been holed up in her room, cranky and depressed. I knew this, but because of how I was feeling I was not very helpful to her. I feel horrible about it. Things were going so well, and because I slipped up, she was suffering.

Luckily I found my way out of the doldrums I was in, and became the Mother again. Yesterday we planned a trip to our town beach. Amanda did not want to go. I had to physically take her clothes off and get her in the shower. I told her over and over again that she needed to get out and she would start to feel better. We fought for over an hour. She pouted and I yelled. She stomped her feet, and I slammed doors. But it was worth it. I got her out.

We all had a wonderful time in the sun and water. Amanda got out of the car and immediately went swimming. The transformation I saw in her eyes was nothing short of miraculous. Her depression lifted (for now). We talked a little, and we both agreed that I was right to make her get outside. She said she felt better, and hugged and thanked me. It was then she admitted that she wanted to hurt herself this week. My heart sank, thinking about all the hard work we have done that may have been destroyed in a matter of days. I realized that no matter how I am feeling, I need to always be vigilant as a mother with Amanda. Just beause things are good doesn't mean they will stay that way. There are no days off for me. I am a Mother.

The Water Parent

I am not a playground Mom. I make no apologies for this. I hate bringing my kids to the park. Yes, I am sure if the other room parents had this information I would surely be blacklisted from the PTO (if I was even on the PTO).
Luckily my husband is an awesome playground Dad. He takes them for hours on end, walking all over town. How he does it, I have no idea.
I don't like going to the playground for a few reasons. One, there is never anyplace with a view of the whole playground to sit down. Two, they never want to leave. Dragging your kid kicking and screaming from the park is not my idea of fun.

This summer we bought a sticker for our town beach. We haven't done it for quite a few years, just because we have both been working and we never know how Jessica will react to certain places. Luckily Jessica loves the beach and the water. She plays in the water all day and is so happy to be there.
We have been about 5 times this summer, and I have discovered something fantastic. My husband is the Land Parent, and I am the Water Parent. I love to swim and play in the water with my kids. The other moms look at me funny because I spend the whole day splashing around like the rest of the 6 year olds.

I have never felt so connected to Jessica as I am when we are in the water playing together. We splash and swim and dunk under the water. We tell elaborate stories about her favorite characters. She even looks me in the eye when we are in the water. This is no small feat. Out of the water, I can barely get any eye contact out of her.
I wonder if she feels this special connection too? I really hope she does, because it is a great feeling.

No offense to all you Land Parents out there, but I don't feel bad anymore that I am not the Mom that brings the kids to the park. I have found something much more important (to me) to be; The Water Parent.