Thursday, December 16, 2010

What to do

My husband and I visited another school today. Once again, I am left struggling with what to do. Mary is very happy at her current school, we have been happy with her current school. Our reasons for looking into another school for Mary have little to do with academics, and more to do with socialization, and the influence other children have on Mary. We are starting to see some things that have made us feel we may need a more "controlled" environment. One that stresses and teaches social skills. This has led us to a small Catholic run school for children with special needs. I knew this school existed, but thought they only accepted children with Down Syndrome. I have since found out that is not the case, however, 50% of the school is populated with Downs children. When we talked to the principal, we both knew immediately that the description of the curriculum as well as other activities at the school were perfect for Mary. Then we took a tour of the school and visited classrooms.

Well, what we saw was wonderful, kids making gingerbread houses, quiet, peaceful surroundings, Virgin Mary statues in the garden, etc... But... these kids were mostly Down Syndrome, some with obvious severe developmental disabilities. I am ashamed to admit this, but it kind of made me uncomfortable, almost fearful. Then, I guess I had a realization that maybe this is how some people react to Mary. Only with Mary, to look at her and even to sometimes talk to her, you wouldn't know, until she starts getting weird on you. I do believe that it is mostly kids that feel this way, and this is why kids at her school react to her the way they do sometimes. Hence, the reason for looking at another school. Mary has got more going on than just learning disabilities. Mary is considered "mentally educable", her IQ is in the extremely low range. Most of your learning disabled kids can have an average IQ and still not be able to read. So how does an average IQ'd child from a questionable home with mild learning disabilities react when Mary tries to strike up a conversation? Let's see, one little boy in her class threatened to bring a knife to school and stab her to death. Apparently he plays too many violent video games. Not an excuse if you ask me! Trust me, we, and the school, are dealing with this. So what does Mary do when she feels unaccepted by her peers? Well, the teenagers are nice to Mary, they think she's cute, and this is why she gravitates towards them.

So, what do we do? I wish somebody would just tell me what is the right thing to do for her. We tried play therapy, but her mental challenges made it difficult for the therapist to "play" with her. I am going to bring Mary to the school, and just let her look around and get a read on how she feels. In the mean time, we will pray, pray, pray. Hopefully an answer will come. Either way, we have the rest of the year to think about it. There is no room for Mary this year, and maybe by next school year, something else will come up.

Thursday, December 2, 2010

Do we ever really grow up?

Since Mary's school goes up to 12th grade, I have been concerned with certain friendships she has made with older kids. I, as you know am not happy with her pre-occupation with the teenage boys. I have talked to the teachers at school and they keep a close eye on her, and encourage her to hang out with kids, especially girls, her own age. The other day while I was picking Mary up from school, one of her teachers came out to talk to me about a boy Mary has bonded with. This particular boy is a teenager, but has the mentality of a 9 year old. The teacher has been keeping an eye out and wanted to know if I wanted the friendship to continue. This I found was a tough one to answer. I do not want to discourage Mary from being friendly, especially when that friendship is to someone who does not fit in with kids his own age. After all, this is the exact problem Mary has! So, I told Mary she can say hi, chat a bit, but not hang out. He may have the mentality of a 9 year old, but I still need to discourage her from hanging with big kids. Mary cannot tell the difference between a teenager with a teenage mentality or a teenager with a child's mentality. So, I gotta do what I gotta do....

Between this, Mary's belief in Santa, and some other issues with my other children, I have been pondering some things.
Do we ever really grow up? I know at my age, I have quiet a few hang ups that stem directly from my childhood. I am totally aware of these things and know I am an adult now, but I still can't seem to shake them. I know it affects my relationships with my children as well as my husband. I know my husband so well, that I know that there are things he does and says that come from his childhood. I know it, but it doesn't stop me from getting angry with him. I know how I deal with the problems my children may be having will directly affect them as adults. So, the child in me worries that I am going to do it all wrong, but the adult in me knows better. This to me seems like a viscous cycle of which none of us ever truly grows up or out of. Surely there is a way of parenting that ensures our children can actually be adults without all the childhood hang ups? Do I feel like researching this to make sure my kids become normal functioning adults? No, not really. I am sure some of these hang ups have kept me from getting into a lot of trouble as an adult. So, I will keep this viscous cycle going.

Tuesday, November 30, 2010


Once again, the holidays are upon us. Mary still believes in Santa. The Elf on the Shelf came out and sits on the shelf, and reports to Santa every night to let him know Mary has been a good girl. Mary knows he reports to Santa because when she wakes up, he is on a different shelf. Last night she asked me if Santa was real. I asked her if Santa didn't bring the presents, who did? she said, "you do". I gave her the same talk I gave all my kids, all about the magic of waking up and seeing all the gifts, no matter where they came from, Jesus' birthday, etc.. I really don't think she gave it a second thought, because she then proceeded to give the elf a note to take to Santa.

I don't know why, but this makes me sad. I think it makes me sad that I really don't know if, or when she will fully comprehend the whole Santa thing. It just doesn't seem right to continue making her believe, when clearly she has heard something that made her question whether he is real. I'm afraid trying to explain it to her will be confusing and possibly make her sad. There is a big part of me that wants her to always believe, not only to hold onto her innocence, but it helps to hold it over head as well! I won't even mention the fact that remembering to move the elf every night makes me crazy. I don't know how many times in the past I woke in the middle of the night to move him. Thank you Hallmark for coming up with the Elf on the Shelf!

I have never actually said the words to my other children, "no santa isn't real". As I said, I told them to remember the magic of it all, and to remember the real reason we celebrate Christmas. Like everything else with Mary, I guess I will do the same and just ride it out and wait for it all to resolve itself. After all, it always does.

Monday, November 15, 2010


As I write this I am still reeling in the fact that Mary has reached a milestone that has me, well, reeling. At 10 years old, puberty is in full swing, Mary is more developed than I was at 14. I know the day is going to come when she gets her period, and I am not looking forward to it. I still help Mary with her basic hygiene, from teeth brushing, face washing, (as we are battling acne!), washing her hair, and getting in all the nooks and crannies while showering. Tonight I realized it was time to shave her armpits. Yes, this has got me more perplexed than the thought of her getting her period!

I know I have to let Mary learn to take care of these things herself. I have been trying to give her more freedom in taking care of her body. I believe she is getting the hair washing thing down, I am not seeing greasy hair the next morning when she has washed it herself. She does fine on her body, but for some reason spends more time cleaning her feet?? However......The thought of having her shave! Nope, I told her under no circumstances is she to touch the razor without me. I realize that 10 is a little young, and with her developmental delays, its like expecting a 6 year old to shave. Knowing that makes me feel a whole lot better about not letting her do it herself. After all, it's a sharp object!! Thankfully, her legs don't look like they are in need of a shave, nor has she asked.

So my hope, and my fear is this, I hope since we are dealing with all this at such a young age, by the time Mary is a teenager, she will be an expert at taking care of herself. My fear is, what the hell am I going to be dealing with when she is a teenager!

Sunday, October 31, 2010

Writer's block?

Either I am suffering from writer's block, or I have finally come to terms with Mary, being Mary. Sure, things still happen around here that make me go hmmm, but I guess they just don't eat at me anymore. Every time something comes up and I think about blogging about it, I say, " nah, it's not that big a deal". I believe starting this blog has helped me tremendously.

After a while, I felt like I was repeating myself in my posts. They began to sound too whiny. I do not want to become one of those people who complains about things constantly, because Lord knows, I am aware that life could be a lot more difficult. I know how blessed and lucky I am. I guess I needed to get out my feelings so ultimately I was able to kick my self and say, "get over it already"!.

I have even noticed that in my everyday conversations with people, eventually, the subject of Mary comes up. I know, when I get on the subject of Mary, it seems sometimes I can't stop! So there again, I tell myself I need to stop, there is nothing new. I am the only one who cares. I do not, by any means, mean to say the people I talk to do not care, just that they see her as who she is and not what she has, or does. It's high time I start thinking that way. There I go, I know I have mentioned that more than once in my posts.

So what now? Believe me, there are plenty of things I feel are blog worthy. When I think of the money that we pay for therapy and medications to help us get through the difficult times, it amazes me. In the past I have always searched for answers through other people. All along, knowing myself what I need to do. All it took to find this out was starting a blog. Maybe I should start working on the other members of my family and change my blog to Diagnosing Murphy. Now that will be an undertaking!

Friday, October 22, 2010

Play therapy

Well, it seems play therapy was not a good fit for Mary. It was kind of hard for the psychologist to get anything out of her when all she did was nervously chatter for an hour. When Mary feels like she is expected to do, or say something, she gets nervous and she will talk non stop, jumping from one thing to another. I can tell immediately, the difference between nervous chatter and plain old Mary chatter. During the course of her 3-4 sessions, I got to sit in and talk with the Dr. as well. Once again, I was hit with a realization about Mary.

Mary is a happy, healthy little girl who has many quirky personality traits. I know all of them, and I have seen a lot of them change or completely disappear over the years. All without any outside help. It seems that every time she would do something odd, I would tell the doctor, we would talk about medication changes, what could be causing her behaviors, etc. All the while at home, we are constantly talking to her about what is acceptable and what is not.

I realized that I am constantly looking for a fix, or a change. I don't think I meant to, because I will be the first to say I love her just the way she is, and wouldn't want to change her. When in actuality, that is exactly what I was doing. In the last 2 weeks, I have witnessed Mary stop and think about what she is going to say, and realize either how she should articulate it, or if she should even say it at all. This all from a child who supposedly has "mushy" breaks. Meaning, she cannot stop herself from saying or doing things. When the psychologist had her list how she felt about certain things, most of it was love, happy, beautiful, family. When I saw that what she thought of herself was that she was beautiful, I wanted to cry. I know that there are times when she realizes she isn't like everyone else, or her feelings get hurt because somebody said something mean. I also believe that there is more happiness in her and she can quickly overcome the bad feelings. Maybe that is just my hope, but I'll take it.

We just had parent teacher conferences. Mary's teachers are happy with her, her schoolwork and ability to pay attention is fine. They keep their eye on her and gently remind her when she needs to redirect her attentions. With all that she has in her life, I don't think one more therapy can do any more than what those of us that love her can do. Mary has been described by her teacher and even the psychologist as an enigma. There is no rhyme or reason to her, they cannot explain why she does what she does. She cannot be fixed, and I will say it again, I don't want her fixed. I think I just thought I was trying to help her. Mary is happy and loved, why would anyone want to fix or even help those feelings to be any different? Not me, not anymore.

Sunday, October 3, 2010

Letting it go

I am grateful for many things in my life. Lately I have been reflecting on all the people in my life, specifically our circle of friends. I know I have mentioned more than once how I stress over how people are going to react to Mary. I came to the conclusion that it's not Mary's behavior I am concerned with. It's mine, or what I think people with think of me. I guess I'm afraid they are going to feel uncomfortable with they way she is behaving or what she is saying, and that I am letting her, well, basically be herself.

We have a wonderful little circle of friends, and everyone loves and accepts Mary. Even my friends children are great with her. So why do I still fee this way? I know it is silly, and I don't think for a minute that any one of my friends feels uncomfortable with her. I have three other children, and there are things Mary will say or do that my other kids would never get away with. If it weren't for that, maybe I wouldn't worry so much. I just wouldn't know any better.

It amazes me how you can go on with a belief or behavior without consciously thinking how ridiculous it is. Then all of a sudden it hits you, and your like, "what the heck is wrong with you"! So now, when I start to head towards Mary to stop her, I will try to stop myself, and just let it go. I feel so blessed and grateful for all the people in our lives, that it will bring me to tears at times. I need to start thinking that maybe they are just as grateful to have us in their lives as well.

Thursday, September 23, 2010

Mary's world

This week has been tough. My oldest daughter Sarah experienced the death of a good friend. Sarah's friend has a little sister a couple of years younger than Mary. They had gotten together on a couple of occasions to take their little sisters to the movies,or to spend a little time together. Mary doesn't really remember, but she was sad and asked if she should say a prayer.

I knew if I let her think about it too much, she would start to cry. I could see by the look on her face that she was deciding how or who, she should feel sad for. She knows that death is sad, but I think knowing that her sister was hurting bothered her more. Mary asked me if he had a job, I told her that he did. After some thought, she stated that they were now going to have to find someone to take his place at work. I didn't know if I should laugh or cry at her observation.

It amazes me how her mind works sometimes. How at times there is no sense in what she says, and at other times, she can be the only one in the room making sense. I found a really good website that gave me some insight into talking to Mary about death, http:// It's funny how many things I have not bothered to talk to her about because I figured she wouldn't understand.

I have a friend who often says that we should all be lucky enough to live in Mary's world. I think she meant that because Mary seems oblivious to a lot that's going on. I believe Mary's world is so much more. Not only is she not oblivious, she is thinking about way more than we would. So yes, Mary's world would be a wonderful place to be.

Tuesday, September 14, 2010

Growing pains

That is, I am the one experiencing the growing pains. Mary is my 3rd daughter, I have been through this puberty thing before. Oh, the obvious, chest development, hormones fluctuating and so on. However, I have been very happily oblivious to my older girls discovering certain parts of their bodies. I will not go in to detail, and it really was not that bad. Mary, at 10 is as the Dr. says, at stage 4 of puberty. I have been trying to get her to wear a bra for a while now. Being sensitive to what she is wearing, Mary has refused the bra thing. Fortunately, her posture is such that her shirts hang, so you can't see too much. So after purchasing every style out there, it seems a sports bra is the way to go. Why a sports bra? When Mary put the bra on, she pointed to her "abs" and said "look, I got these". I believe that in her mind, she sees that as sexy. I guess that's better than thinking the skimpy lacy bras are sexy. Still, I am not happy, and all my explaining on what is acceptable and appropriate, I can only hope is getting through to her.

After seeing, and realizing there are parts of her that feel good, I knew I had to have a certain talk with her. I have talked to her before about her period, knowing it's coming soon. I had to prepare her, and she seems o.k. with it. Up until now, she still believed babies were taken out of your stomach by the doctor, which I was more than happy to let her continue to believe. Last night I had to explain exactly where babies came from. At this point she was upset with herself for what she was doing, and embarrassed. I went through the whole thing about feelings, and your body ,etc. I did leave out how the baby got in there. She didn't ask and I cannot, will not, voluntarily give up that information! Her response to everything was "that's disgusting"! I hope she continues to think that until she is about 30.

I'm sad, sad that she could be oblivious to so many things, but not this. I worry about her doing things and not understanding what they mean. I worry about her being taken advantage of in so many ways. I worry about these things with all my children, but with Mary it's different. Mary has always had a thing for the boys, for some unknown disturbing reason, she likes the older ones. Teenagers, preferably with long hair. I don't know where, why or how on this one. Mary also longs to be accepted and to be like everybody else. This makes her more vulnerable. I wish I could just keep her locked up and away from the world forever, but I know that is completely insane thinking. I know things are going to happen, and I am so afraid that I will not be able to handle it. These are the times when all I can think about is how I would give up and sacrifice everything to just have her be your average little girl.

Mary started her first session of "play therapy" with a psychologist. I am hoping that this will help with her social skills. Hoping she will see that going to a group of teenage boys and flipping her hair and flirting with them is not appropriate. I need to block out all the Disney and Nickelodeon t.v. shows that she is modeling her behavior after. Most of all, I need to keep praying, for her and for myself!

Tuesday, September 7, 2010

Everything in moderation....

Mary has a tendency to obsess about all different kinds of things. Her obsessions come and go. We tried medication, didn't work. The meds for ocd just made her less "inhibited". Mary expressed those inhibitions by prancing around like she was a trampy teenager. No thank you! I'll deal with the obsessions! I know that if Mary gets too much of something that she likes, she will obsess to a point that she can't live without it. Then I go in like the bad guy and take it away.

Mary loves to think she is a teenager, she has an obsession with cell phones. She owns tons of toy phones. Well, I came up with a plan to get her to stop pulling the hems out of all her clothes. If she can go the day without unraveling her shirt, she gets a smiley face, after 4, she gets the ultimate reward. That being, my Ipod Touch. There is a texting app, and Mary gets to text. It started out with just messaging her sisters, then my niece visited, Mary got her number. My daughter had a friend sleep over, Mary got her number. Before you know it, she's got 4 different conversations going. I read them and realized her sentence structure is improving with each text. Great! I have a teaching tool as well! Not so fast........

I started to notice her freaking out. Battery warning, she charges it, and checks it every other second for a message. If I tell her I need to see it, she freaks, "don't read my texts"! Then we had a setback. I noticed that while Mary was texting 3 different people, she managed to unravel the hem on her skirt. I know it was because she was anxiously waiting for the next message to arrive. Immediately I confiscated the Ipod. There's a Pearl Jam song, "Crazy Mary", wild eyed, crazy Mary. That's what I was looking at. Mary said all kinds of things, "your mean, I can't live here anymore, I'm going to move in with Sarah", etc. The look on her face was, anger, panic, sadness, fear, all in one expression.

Once again, I will scale it back and modify any way I can so she does not become so obsessed. I will admit, there was a part of me that realized it needed to be scaled back. Then, a part of me that says, nah, she's happy, there's peace in the house, let it go. Someone needs to remind me of this the next time the words, "I have a great incentive for Mary" comes out of my mouth!

Monday, August 30, 2010

Let the games begin!

This week will be Mary's first full week of school, which started last Wednesday. So far, so good. When I ask if she had a good day at school, she replies, "I absolutely had a great day!" That is so good to hear. We still have not had any homework to deal with, and won't until next week. This week is for testing and seeing where everyone is academically. Being in school all day has had such a positive effect on her attitude as well. Mary is more cooperative, and less moody when she gets home. I know it is because she is fully engaged all day, instead of being at home going stir crazy! That is one child that needs to interact with others on a regular basis!

With the start of the new school year, come sports, and practices, and running my children all over town. Mary would like to join the cheerleading team this year at her school. I am a bit apprehensive because, while Mary loves to dance around and cheer, she does NOT like when the whistle blows! Hearing that shrill noise causes her to look for the nearest chair to crawl under. Towards the end of the last school year, her PE teacher told me she was doing great during PE whenever the whistle blew. Mary I guess got used to it, and no longer covered her ears or ran for cover. I have noticed a slight change in her reaction to some loud noises. Add the crowds and the cheering, the buzzer for the scoreboard, and the whistle? I should probably take her to a couple of basketball games myself so I can see for sure how she deals with it. Mary is so excited to do this though, and she assures me she can handle it. As in, "Mom, I'm 10 now, I can handle this"! I have to let her try. I am not however looking forward to all the scheduling, and running around. I could always count on Mary having only 1 day a week where she would have to be somewhere, now it will be practice one day, then games every week, at all different schools. I will tell you though, if she does this and has fun, and doesn't freak out, I will be happy to be running around like a chicken without a head!

Thursday, August 19, 2010

One more week

It's been a while since I've written anything. I am patiently awaiting Mary's first day of school next Wed., my other 2 went back this week. I am temporarily in limbo, I don't know what the heck to do with myself. Overall it's been a good summer. I really didn't have much planned for my kids this summer, one beach week and 2 seperate weeks of camp. I have always given them a full summer, so I thought we would take it easy this year. Well clearly, I need to find a happy medium. Everybody was bored to death, except my son who spent 3 weeks with his cousins in Virginia. Last year they complained about having to get up early all the time to go to camp. I'll figure it all out next year.

One thing I've learned about Mary is, if she gets too much of something, that's all she wants to do. Just like hanging out with her friends, she became obsessed with seeing them everyday. My oldest daughter Sarah whom Mary idolizes, spent a lot of time with Mary. Well, that led to Mary constantly asking for Sarah, even calling her on the phone at 7 in the morning! Then towards the end of the summer, we didn't really go out much at all. So when I do need to go out, like to the grocery store, Mary says "NO" I am not going! Apparently she has become obsessed with sitting and watching t.v. all day. My fault, I know.

Here are just a few things Mary has shown growth in this summer. As I said before, she is asking more questions about how and why things are the way they are. Some things are a bit odd, she asked me yesterday where the mail came from, did it come from a factory? Funny the things we take for granted that our children just should automatically know. Although Mary has spent plenty of time on the computer, playing games and of course watching t.v. episodes, she has now learned how to shop online. Much to my dismay, when I say we need to go to Target or the mall, she will look up websites to see what she can get. Probably the biggest thing, I don't know how, but she figured out how to play solitaire on my Ipod. Solitaire requires numbers in sequence, and every other color is the same. It seems that all the things she has trouble with, math, following more than one step at a time, is involved in that game, but she figured it out! I asked everybody in the house, no one helped her.
We seem to be on a no string pulling streak, however, I have noticed her twirling her hair. I thought, thank God, finally something non-destructive. That was until I had to unknot her hair! Can't wait to see how all this plays out when school starts. Stay tuned.....

Monday, August 9, 2010

Camp Success!!

Well, camp Phineas and Ferb was a huge success. Mary's counselors said she did fine, she woke up every morning ready to go and remembered all she had to bring with her. Remembering her lunch box and a sweater were easy, I was surprised because her lyrics which were all over the house all week long, managed to be in her hands every morning, with NO reminders from me!
Friday there was a small performance to end the camp. This included 4 song and dance numbers, which made Mary very nervous. Even though she was practicing all week, she was still nervous, more for the fact that people would be watching her. I admit, I was afraid she would stand out like a sore thumb, not being able to follow along with the rest of the kids. Boy was I wrong! Mary had all the moves down, even though singing and dancing at the same time was difficult, she did not look any different than the rest of the kids. As a matter of fact, she did better than one poor uncoordinated child. We did have one hairy moment in between songs. Mary noticed her shoe lace was untied. This I know, sent her into a tizzy, I know she could not focus on anything other than getting that shoe tied. I could see the look on her face, her eyes searching, her foot, the people, her teachers. Finally, she couldn't take it, she bent down to tie the shoe, and one of her teachers ran over and did it for her quickly, so Mary could catch up to the other kids. The entire process probably took all of 2 minutes, but to me it seemed like an hour, in slow motion! Needless to say, Mary didn't miss a beat, she was happy, smiling, and knew just what she had to do. All of which left me with tears in my eyes, and a heart swollen with pride. Next summer, I will not be looking into any "special needs" camps!

Monday, August 2, 2010

Camp day!

Well, I dropped Mary off at camp this morning. I just love those moments when you realize that everything happens for a reason. The camp Mary was supposed to go to was cancelled, so I signed her up for one with kids who are not special needs. Well, we get there and she sees not 1, but 3 girls she knows from her old school. As luck would have it, they were probably the only 3 who actually played with her at that school. After dropping her off, I left not feeling stressed or worried, but happy, maybe a little humbled? You see, I realized that the special needs camp was cancelled just so Mary could be in this one, so she could feel just like everybody else. As I said before, I don't give her enough credit, I have little hope that she will fit in with so called, "normal kids". Mary is as normal, if not more normal than some kids I have seen!

Stay tuned for camp Phineas and Ferb, the results.....

Monday, July 26, 2010

What a bad day!

We had such a rotten day yesterday. Things started out alright and somewhere went downhill. I am trying to get back on track with taking Mary to the YMCA. After a couple of weeks of being lazy and doing nothing, Mary did not want to go. Christine came with us, so Mary didn't put up a fight, and enjoyed her time there as usual.

Then we get home, I notice Mary has changed her shirt. I didn't have to ask, I knew what happened, but I insisted she bring me the shirt. Yes, she tore a hole in it. I was so upset, she had been doing so well. She still pulls the threads on existing ripped shirts, but she has not torn anything in a while. I got upset, threw the shirt in the trash, after I tore it up some more.

Had a couple of errands to run with Christine, so Mary had to come with us. I am also trying to not buy her things every where we go, especially after she rips something. So, Mary was way off today, I heard all kinds of things. "I should get a new, nicer mom, I'm leaving this house, you need therapy, or you should go see an orthodontist". I know, where did that one come from?. Every store we went to she just got angrier and angrier. Finally, she blew in Staples. This is when she shoots herself down, by saying negative things about her self. We got a chuckle out of the "I'm interprintable" comment. What is that, you ask? Well, it means she can't be printed. We were in Staples. Then the comment that got my brain all scrambled and not functioning properly, "I want to die". I know she really doesn't mean this, nor does she understand the full impact of what she is saying. I am not good with knowing the right things to say on the spot. I need time to process, of course I told her it was a terrible thing to say, etc.

On the way out of the store Mary hauls off and smacks my bottom! Already flustered, I turn around and grab her arm and pinch her. I think if there was a cop close by, I would have been arrested right there in the parking lot by the way she reacted to it. In the car came the tears and the clenched fists hitting her legs, and of course the apologies, I'm sorry Mom, I love you..... Of course I feel just horrible. I know I should not react the way I do sometimes, but it is so hard not to. I probably do need a good therapist, or maybe I'll go see an orthodontist.

Wednesday, July 21, 2010

Things Mary says II.......

This post should also be known as things Mary does..... Mary has straight hair, last week I noticed a strand of hair that was curled. Of course Mary had no idea how it got curled. It's amazing how sharp she is when she doesn't want to fess up to something. I knew she got into her sisters room and was messing with the curling iron, but no matter what, she did not admit to it. Today, I noticed her hair on the top of her head was burned! After much prodding and trying to get her to tell the truth, she admitted to using the straightening iron. So, once again, she is banned from being upstairs by herself. I will not even think of the what ifs!

Last weekend we went to see a couple of movies. I will put this all in Mary's words. We saw Despictable Me,and Source of the Prentice, which Mary enjoyed. Mary said she wants to see "A Teen", (A Team), as well as "Cats & Dogs, the return of Kitty of the Galore (Kitty Galore). Oh, and she would also like to see "Exception" (Inception), as well as, no problem with this one, Ramona & Beezus, which she read the book of it. I got all this in one sentence while waiting for Despicable Me to start. I really should put all of this in a book!

Tuesday, July 20, 2010

Credit where credit is due!

I was so excited to see that the local children's theatre was hosting a camp for children of special needs. I immediately signed Mary up. Phineas and Ferb is one of her favorite cartoons, and this was the theme for the week. Mary was so excited, everyday practicing the theme song from the show. I was excited more for my own selfish reasons. I could send her to a camp where I didn't have to worry about her fitting in or being able to follow along. Then I received an email that they cancelled the camp due to low enrollment. However, I did have the option of sending her to the "regular" camp the week after. Still the Phineas and Ferb theme, but with no leaders for special needs kids. I ran the whole camp cancelled thing by Mary, hoping she wouldn't care. Boy was I wrong! Mary was devastated, stating how she knew the theme song and all. So, I told her I would see if there was anything else for her, as I contemplated sending her to the other camp session. It took me 3 days of worrying, wanting her to go, but afraid of her not fitting in, or being able to keep up.

Finally, I called the director of the camp. After trying my best to explain Mary to him, he assured me that we could give it a try and if she is not happy they can refund the camp fee. I know that Mary will be fine! I know I don't give her enough credit, I get so caught up in her "differences" from other kids, that I get blind to just how much she is like other kids. Even bringing her to the YMCA kids club gets me worried. I always feel I have to explain her to people, yet everyone says she had no problems, got along just great, etc.. I do realize that there are certain situations where I need to explain some things about her, I just wish I didn't make more out of it than there is. I would like to say, Mary is a happy, healthy,loving, caring, unique child with a dash of quirky. Something like that. Why do I need to be so technical? I will come up with something!

Wednesday, July 14, 2010

Things Mary says...

It seems like forever since my last post. It has been a relatively calm summer around here so far. Thankfully. I feel like I've got my Mary back. Her attitude and behavior is the same as it always was. I have not (knock on wood) had any bizarre surprises. We have had her play with her friends a couple times this summer. I realized having someone to play with everyday made it impossible for her to keep herself entertained. Something she has always been able to do. Mary could spend the day, reading and playing in her room. I think she became obsessive about being with these 2 girls and that's when her behavior got out of wack.

Mary has always had her own way of saying things. We would call them Maryisms. It was so adorable when she was little. Now that she is older, it amazes me to see and hear how her brain tries to process things. I am just going to ramble on here a bit about some comments, so bear with me. The other day we were in the pool and she had a very serious look on her face. Then she asked me which was longer, the pool or the water. It took me a minute or two to try to figure out what she was talking about. I told her they were the same. As I said, it amazes me. To read all the evaluations and tests on her brain and what it is or is not capable of, and then see her try to figure something like this out.... I read an article the other day about how they are now realizing that the brain is not as hard wired as they thought. It is more elastic, I believe was the word. It stretches and changes shape, etc. I witness it everyday.

Mary has a language processing disorder, sometimes the words get scrambled. I could go on all day with examples, but will only list a couple. After seeing a movie she enjoyed, Mary stated she wanted to "re-see it". Makes perfect sense. Mary asked me to make her a "sunny fried egg" for breakfast. Again, makes sense. My all time favorite was when she stated she wanted to be a "human bodytologist" when she grew up. This after her seeing an episode of "Bones" with her sister. Most of what she says makes perfect sense, it's just a different way of saying things. Sometimes, I can watch her face change as she tries to figure out the correct way to say or ask for something. The change in her face must be due to the elasticity in her brain.

Tuesday, July 6, 2010

Back to normal?

Well, we are home and back into the swing of things, or are we? I am amazed at the fact that very rarely can a week go by without my having to deal with some new parenting dilemma. I have been doing a pretty good job (I think) of keeping Mary occupied and entertained this summer. Sometimes, that involves a trip to the grocery store, or the Super Target. I realized that I have always bought Mary something, anything, even just an Archie comic book at the checkout line. Mary asks, Mary receives. Never mind the fact that I very easily tell my other children no all the time. Well, what I have been doing is creating an "I want" monster that cannot be tamed! Of course I am realizing this all now that it seems impossible to reverse the damage.

Well, with all my 21 years of mothering experience I figured I could come up with something. So, I decided I would incorporate some type of allowance, chore type thing. It works with my other kids. I know, we should have done it years ago. I have tried, but it never goes as planned with Mary, so I never pushed it. What I did was assign a small amount to each chore, like .50 cents for picking up pieces of paper, $1.00 for putting books away, etc. I wrote all this down on her dry erase board in her room. Mary seemed to follow along with my explanation of you can do a little everyday, and wait till you have enough saved to buy yourself something. Ha! What I have now is, "Mom, I picked up the paper in my room, can we go to Target?" Sure, with .50 cents you earned I'll buy you a $15 toy! Remember, Mary has a math disorder, absolutely NO concept of numbers!
Apparently, what she got out of my little lesson was, if you clean you room I will buy you something. It is so ironic how she is so easily manipulated with the easy stuff, yet I cannot manipulate her with all the complicated stuff. No matter how I try to spin it, I said I would let her get stuff at the store. So, until I can figure all this out, probably with professional help, I thank God she has older siblings I can leave her with so I can go to the grocery store.

Monday, June 28, 2010

Headed to the beach.....

Leaving home for the beach turned into a tense filled event. We were going to take two cars due to all we bring to the beach for the week. Suitcases, boogie boards, umbrella, pails, shovels, fishing gear, and of course, my husbands metal detecting gear. Oh how I hope he comes upon something valuable one day. If anything so we don't have to hear him gripe about never finding anything of value. Anyway, that made Mary happy because two cars meant she could sit in "her" spot and not in the middle. Then Tom realized with some crafty maneuvering, we could all go in his truck.
Mary had a colossal hissy fit. No amount of explanation, consoling, or deal making made her feel better. So naturally, I turned to screaming at her. Something I always immediately regret.

I turned to the back seat and very sarcastically said "there's more leg room in the middle anyway". In which Christine, (my 2nd oldest) said she was just thinking the same thing. Christine, being Christine naturally agreed to sit in the middle.
I am so proud of my oldest girls. Both Sarah and Christine have an innate sense of wanting to be helpful, but knowing they shouldn't just jump in and save the day. We decided after we stopped for lunch, they would switch seats, and Mary could have her seat directly behind me.

All was right again in Mary's world, and of course in mine.

Tuesday, June 22, 2010

Going to camp...

Mary is on her second day at Vacation Bible School camp. It is only till 12 o'clock, and I knew she would be o.k. being in familiar surroundings with people she knows. So far, so good, she is having a good time. I love that she finally can relay to me some of what she did during the day. Sunday evening she was very stressed out. I know she was worried about going to camp and starting something new. When Mary is worried about something, she becomes very distressed. Always, when I ask her what's bothering her, she says she doesn't know. There is really nothing I can do or say to make her feel better. It is only after she goes, that she feels better. As long as nothing negative happens. I guess like most of us, she is afraid of the unknown.

Our summer so far is going well. I feel like I've got my Mary back. I don't know if it has been the change in medication, or keeping her from playing with those girls everyday. We still have issues with unraveling the hems in her shirts, but it is definitely not happening as much. Hopefully it will stop all together. She does seem less stressed. We are getting ready to go on vacation for a week at the beach. We take this trip every summer, and every summer Mary starts obsessing about it. I know she is nervous because even though we go every year, she can't quite remember how she felt, so it becomes an unknown all over again. Already she is talking about the long drive, and where she is going to sit in the car. I wish I had magic words, because she will drive us all crazy until we get there!

Friday, June 18, 2010

Two birds with one stone...

I have always tried to stay active and attempt to keep myself fit and healthy. When Mary was a baby and we got our first diagnosis of Developmental Delay and Hypotonia, I started working out vigorously. I went to the gym, got a personal trainer, and started lifting weights. It felt great to have control over something. I started to tell myself that I was doing it for Mary. We didn't know when, or how she would develop. So, every time I worked on my legs, I would push myself as if I could will her legs to grow to be strong. Same thing with my arms, and so on. Now, I did not end up with this perfect hard body, but I was happy. I never really struggled with my weight. I go through stages like everybody else, hate my weight, love my weight etc.. At this point, I am just trying to maintain my weight. Basically, I exercise because I love food! I have also come to realize that my general frame of mind is better with exercise. I know when I started this blog, I was depressed. I also had not done much exercising in weeks! Feeling much better these days, thanks to my intense need to help Mary.

I have been going to the YMCA just about everyday for the last 2 weeks. In trying to keep Mary occupied, and from missing her "friends" too much, I figured an hour or two in the kids club would make her happy. It worked, even when I don't feel like going, I push myself for Mary. I realized today that I was pushing myself harder again. All with Mary's happiness on my mind. Once again, I feel like I have a bit of control, my mood is better, and I don't have to feel guilty when I polish off a pint of Ben & Jerry's. I hope that I can keep it up during the weeks I have her in camp.

Wednesday, June 16, 2010

Making friends

Mary has always been very friendly, but has never really had a "friend". This year, a girl in the neighborhood started going to Mary's school. I take both girls to and from school each day . I was thrilled to see Mary interact with this girl, they both seemed to understand each other and not get bothered by the sometimes off the wall conversations. Mary also opened up at school, her teachers where pleased with how she grew socially. Even her reading voice became louder, the teachers could finally hear her. I know having this friendship helped Mary to not feel so different. Now, like her brother and sisters, she had friends. I was happy to see her not spend so much time alone. This girl also has a sister Mary's age , so everyday there was someone to play with.

Well, we have had to put the breaks on this situation. Mary has developed some negative behaviors and I have noticed changes in her attitude that I am not pleased with. There was an incident here in the neighborhood where one of the girls blamed Mary. Fortunately a neighbor witnessed the whole thing and Mary had nothing to do with it. Mary however, was traumatized! It was impossible to help her understand that we knew she didn't do anything wrong. Both of these girls have had a rough upbringing, they are being raised by their grandparents because mom has been deemed unfit. So, understandably there are behavior issues.

So, after talking with their Grandmother, I asked that she keep the girls from coming by everyday. Mary is so easily manipulated and very easily influenced, and I am afraid both of these girls have taken advantage of that fact. Even Grandma admitted to that, with explanation of course. I know that I cannot shelter Mary from everything, she needs to interact with other kids. I can however, do whatever it takes to make sure she is not taken advantage of. Mary is a wonderful mimic, she tends to take on the likes, dislikes and mannerisms of other people. They say it's because she doesn't know how to act like her own person. Something clinical like that.

Mary will start "play therapy" with a psychologist in August and I will do my best this summer to help her learn to be herself. To help her understand what it is like to have, and to be, a good friend. It's funny, because Mary has such a wonderful, unique personality all her own. It would be nice if everyone were a little more like Mary.

Saturday, June 12, 2010

In the sandbox....

We went to the beach the other day. What a perfect day. Mary was so excited, but it was so hard for her to wait the hour it took to drive there. I was feeling quite content and peaceful. I was in my sandbox all day. I wish I could bottle up that feeling and take a drink whenever I need it. Unfortunately that can't be done, fortunately, they sell wine at the grocery store. My son played with Mary and she had a blast! Jimmy is only 15 months older than Mary. When they were little, they were inseparable, now he gets easily embarrassed by her, and will avoid her as much as possible. I know it is hard for him to understand, even though we have been dealing with her sometimes odd behavior all her life. If we are out in public and she does something silly, he gets upset and tells her to stop. I know how he feels, I was just as bad. That's probably where he gets it from. It was hard for me to change my way of thinking and dealing with certain situations when we are out in public. My two older daughters have no problem, they love and accept Mary just the way she is. I will keep working on Jimmy, I know he will get through it.

Why is it that our children pick up on all our anxieties and negative hang ups? My oldest daughter will be 21 in Sept. I am proud of the responsible, well adjusted adult she is slowly becoming. I thought for sure I screwed up her life for good. Luckily I didn't, but I do see that she is a terrible worry wort, has anxieties and fears for which I am constantly telling her to get over. Gee, wonder where she got all that from? I had a meeting at Mary's school yesterday with her teachers and a school psychologist. We went over her evaluation and discussed how to help her with her school/homework. Probably the most important thing that came out of that whole meeting is how I need to deal with everything. I know that my anxiety about her doing her homework or not understanding something is transferring onto her. Mary has anxieties and fears that are magnified 10 times worse than mine.

Somewhere in my mind I equate worry and stress about my children with love. If I don't worry enough, it means I don't love them? I realize that is a very twisted way of thinking, and it has done nothing for me but mess with my health. It seems I am constantly learning something about myself and how I mother my children. I don't strive for perfection, lord knows I don't want my children to think they have to be perfect. I just hope that I can reverse some of the negative things I feel I have instilled in them. You know, like not freaking out that a car is going to back up over them in the parking lot, choking on a hot dog, falling off the earth, that kind of stuff.

Wednesday, June 9, 2010

School's out!

We are on the second day of summer vacation. While my other kids are completely content with sitting around and watching t.v., Mary is not. Mary starts her day riding her bike down the driveway to pick up the newspaper, she also gets the mail for me this way. Then spends the rest of the day asking what we are going to do. I took yesterday to clean the house, do laundry, and try to get things in order so I can devote the rest of the week to occupying my children. This basically means that I will be devoting my days to keeping Mary busy, while my 11 and 12 year old watch t.v. Of course anything I have planned for her, the other two will not be interested in. If it were up to them, we would be out doing something everyday, which of course will cost money. Money I do not want to spend on a daily basis. Mary is perfectly happy doing things around the house, crafting, swimming, bike riding, etc. My problem is that Mary likes doing all these things.....all the time! We will start something, then she will want to stop, do something else, and it goes on and on. If she is not engaged in something, she will say "what are we gonna do today?", over and over. So I will take a deep breath and try to be as patient as I can!

I do have some weeks here and there when they are in different camps, it's all the in between time that is going to drive me crazy! Somehow in the middle of all of this, I still have to do the things I do on a regular basis just to keep this family running smoothly.

Monday, June 7, 2010

Welcome to my playground

Things have been pretty much the same around here, still waiting to get medications straight. Waiting for the Dr. to get back from his vacation to discuss some things, also waiting for school to be done. So I have been sitting around trying to think things through, trying to not get too upset about things.

I often think of the inside of my head as a playground. There is a swing, a see-saw, slide and a sandbox. Most days are spent on the swing, going back and forth from one thing to another, whether it's dealing with my children or just my thoughts. My favorite thing to do is sit in the sandbox. In the sand box I am content, all is well in my world, if sand is thrown at me, I can brush it off and happily go on playing. Sometimes I hop on the slide. I am up really high, then boom slide right back down. Don't care for that too much. I go back and forth between the slide and the see-saw. Up & down, up & down. Makes me crazy! I just want to sit in the sandbox! Then there are days, when the storm comes. At the first strike of lightening, there is chaos. It's raining, and windy, everything is swirling around. I cannot play. These days come when either I don't feel well physically, or I am worried about something involving one of my children. I literally feel like my brain will explode. You would think someone with this much insight to the inner workings of her brain would have more control over it all. No, not me, and I've been in therapy! I'm sure there is a pill I can take to put me in the sandbox permanently, but what fun would that be! It is my hope, that the more observations I can make about my feelings will eventually lead me to just a little bit more control.

I guess when you really think about it, I do have control over it most of the time. Otherwise I would have been institutionalized a long time ago!!

Wednesday, June 2, 2010

EEG Results

I posted a while back about Mary's recent EEG. We have one every year, and this year I posted how I realized I had lost hope that the results would change. Well, guess what? We got a call today, that while her results were still abnormal, they had indeed changed. Of course, this is the story of my life. We don't get to see the Neurologist until Oct. so we have bits of information. It seems there was no seizure activity while Mary was awake, but there was while she was asleep. What exactly does that mean? Well, according to the nurse who called, it could mean it is possible she could outgrow the seizures. For me, this means it is one less pill I will have to give her. Considering her seizure meds may also possibly (love the words possible, possibly ) be affecting her behavior, who knows what will happen if she stops taking them. As I said, at one time all I wanted was for the seizure activity to go away, now I just want to know what to expect! I know I am asking too much, and I really have accepted that this is how it will always be, but still.....

Do I want her to suddenly wake up one day and be just like my three other children? I have to honestly answer no. I know that things are the way they are for a reason. My other children are better for seeing all that Mary struggles with. There is something wonderful in the saying "ignorance is bliss", because Mary, most of the time, is oblivious to what is going on around her. Yes, I know she is aware of more than I know, but she very quickly will happily move onto the next thing. And, as I have stated in a previous post, Mary is the most compassionate child I have ever seen. I believe, one day, she is going to do great things with all the love and compassion she has for others.

Monday, May 31, 2010

Special needs

I have always had a problem with the words special needs child. Up until very recently, I had a hard time saying my daughter was a special needs child. I guess it all goes back to my need to have one diagnosis that I can explain. I have searched online for different websites and blogs. Mostly what I find are families that are dealing with Autism, Down Syndrome, Cerebral Palsy, etc.. So, I felt we don't really fit in anywhere, until I start reading different comments, and I see that there are similarities within all of our children. To look at Mary and even to talk to her at times, most people would never guess there was anything different about Mary. That is why I believe I have been so determined to find out exactly what it is, so I can say "oh, Mary has this or that". Everyday I am realizing more and more that it is not important for me to have an answer. Mary is developmentally disabled, everything in a nutshell. It is not anything you can see, and I am certain it is more common than I realize.

Every day, I struggle with the whys, why me, why her, why us. Then I look at her and my heart just melts. I remember giving birth to all my children, that feeling immediately after, you feel every emotion all at the same time. Relief, happiness, fear, love, joy, you name it. That's the way I feel sometimes when I look at Mary. The biggest feeling is love, I feel so much love sometimes it hurts. Mary gives so much love in so many ways. It seems that what she lacks intellectually is tripled in love and compassion. For this I am thankful, and I am beginning to see what is really important.

Saturday, May 29, 2010

What now?

I was just starting to believe we might have seen the end of Mary ripping her clothes. It has been a few days since she has done anything. Ever since we changed her ADHD medication. This morning I found a shredded shirt in her drawer. I completely lost it. I screamed my head off, stomped my feet, a whole ugly temper tantrum. Of course I'm screaming, "why, why?" Knowing full well that Mary has no clue. Maybe I think if she sees me really angry she won't do it anymore. Not likely. I told her I was not going to spend any money on her for anything. We went to the mall and she wanted to go look in a couple of stores and I said no. I reminded her that I wasn't going to buy anything for her. She pleaded, "I'll stop, I'll stop". My reaction and subsequent punishment was, I realize, pointless.

So, now we changed medication thinking she would stop and she hasn't, what now? Mary started taking an antidepressant thinking it would help with OCD, as she was picking at her skin. All she did was substitute picking her skin to picking at her clothes. I have noticed that she does not seem to be phased by anything sometimes. I started thinking, maybe it's the anti-depressant. It seems like she just doesn't care, she used to get so upset when she did something she knew she was not supposed to be doing. I am going to ask the doctor about stopping the anti-depressant. Why should she take it if it's not doing anything but making her more aggressive? Or am I just looking for something to blame this all on?

Thursday, May 27, 2010

New set of wheels, continued.....

It has been pretty exciting around here the last couple of days. Mary is thrilled with her bike. The last 2 mornings she has gone out in her pajamas to ride her bike to the end of the driveway to get the newspaper. This would not be a problem if she had any concept of time! It's tough to get her going in the morning, especially when she has something in her head that she wants to do. I love to see her so excited, she went out this evening with her friends and rode around the neighborhood. I got no argument when I told her she had to put her shoes and glasses on!

We have also had Mary on full blast the last couple of days. The Dr. said to stop her ADD meds. We are switching her meds to see if she will stop the picking and ripping her clothes apart. So, I sent her to school the other day with a note warning the teachers. Mary is extremely talkative, jumping from one subject to the next when not on her medication. I sit anxiously waiting in the morning for it to kick in! We have started on a new prescription, but she is starting off on a low dose. It can be kind of amusing watching her sometimes. Actually, it is only amusing knowing it will not last. I don't know if I could handle that all the time. I admire those parents who won't medicate their children, and will try all kinds of other remedies to deal with ADHD. For me, adding the ADHD along with all her other quirky personality traits would lead me to a nervous breakdown for sure!

Tuesday, May 25, 2010

New set of wheels!

We have been trying to teach Mary how to ride a bike for a while now. She outgrew training wheels a long time ago. It was sad to see her wanting to go out with the other kids in the neighborhood, but knowing she couldn't. My husband worked with her, and she tried so hard until she was just too discouraged to try anymore. Mary simply does not have the coordination or balance to ride on 2 wheels. Not only that, but trying to deal with hand breaks and petals, forget it! So, for her birthday we got her a 24 inch cruiser, and ordered some fat wheels. Fat wheels are training wheels made for kids like Mary who need to ride bigger bikes. They are larger and thicker than standard training wheels and more stable. The wheels were delivered today, and Mary was cruising the neighborhood this evening. The wheels cost more than the bike, but they were so worth it to see the look on her face, she didn't want to stop! With my husband away, I figured out how to put the wheels on. Now if only I could figure out how to use the pump to put air in my tires! I'd much rather ride with her than try to keep up with her on foot!

Monday, May 24, 2010

Orthodontist visit

In the last 2 years, Mary has had extensive dental work. Expander to widen the roof of her mouth, Herbst appliance, which basically rigged her top and bottom jaw to move in opposite directions, braces, and head gear. Mary was miserable, but took it like a trooper. To have this work done at 8-9 years old is tough. I wouldn't want to do it. We started all of this work at such an early age because she just looked awful. Her teeth were all over the place. They were different sizes and shapes. Mary had what they called an "over jet", more severe than an overbite. Her teeth were growing straight out of her mouth, she couldn't close her mouth because her teeth were in the way. Finally about 3 months ago, everything was removed except the expander which we had to attach a retainer to every night at bedtime. The dentist wanted to make sure we kept her teeth straight before we started phase 2, (braces again).

One night before bed, Mary decided she didn't want the retainer in her mouth anymore. I don't know how, but it had to take a lot of effort as well as pain, she removed it. I noticed the next night when I went to floss her teeth. After rushing to the dentist the next morning they determined it was too mangled to replace. So, Mary got a little break from the metal.

Today, the Orthodontist informed us that all her adult teeth would be in and they are starting phase 2, in 6 months. More braces, Mary is not happy. I know it is necessary because I can already tell there is some undesired shifting going on as her teeth grow in. I hope and pray she doesn't decide to get the pliers out and start pulling at them!

Saturday, May 22, 2010

Seriously now...

I have more than a few reasons for starting this blog. One big one is most definitely how much fun we can have with all this. I realized one day that not a day goes by in this house with out something happening. More times than not, thankfully, it is something funny. I do not want it to seem all gloomy. Life is wonderful, I have a great life. Mary is the brightest part of it all. I feel I have learned more from her than I could imagine. Mary is my most compassionate and loving child. She thanks me every night for making dinner, always compliments me and tells me how much she loves me. I do get sad sometimes, because honestly it is not easy some days. But, most days are amusing to say the least.

Today was a mostly uneventful day. My husband is out of the country on a mission trip for the week. I cleaned, did laundry, while my children laid around watching tv. I'm still moping around a bit, I have managed to have both of my older daughters angry with me. We went to church, dinner and then we all went to see a movie. I was thinking, wow, today was a good day. Mary did not destroy one shirt, nor did she do anything without asking or telling me.

We saw the movie "Letters to Juliet". Great movie, even my son liked it. I was commenting to my children how nice it was to see a good clean movie, no cursing, nudity, etc. My son reminded me of a scene where an old man gives someone the finger. I said, "at least Mary went to the bathroom then." I turned around and there she is manipulating her fingers so she could give me the bird! What a laugh we all had. I remembered her doing that at the beginning of the school year, she saw someone at school do it. So at 9:30p.m. my uneventful day ended in a good laugh, and I believe, my daughters are no longer angry with me.

Friday, May 21, 2010

Back from the psychologist

Just got done with the psychologists evaluation/recommendations for Mary. We still have multiple disorders and unknowns. However, I am feeling a bit more hopeful again. My main concern right now is her destroying her clothes. Dr. seems to think it is a side effect from the ADD meds, which makes sense. When we increased the dosage, her picking at things became worse. So, we will call the pediatrician and change meds. Of course more therapies were recommended for Mary, like behavior therapy, occupational, blah, blah... Heard it all before. More testing is needed to determine Aspergers and Sensory processing disorder. I am truly convinced that we will always have to do more of this or that and never have a definitive diagnosis or treatment plan. So we will spend the summer meeting with more people, etc.. make sure we have her in the right school and so on. I guess the one truth we have is her brain is not functioning properly, it is like living with a toddler. Mary is stuck somewhere in the middle. She is not disabled enough to be considered extreme and she is not "normal", whatever that is these days.

Annual EEG

Mary had her annual EEG today to check her seizure activity. Mary has not had a seizure in 8 years, thanks to daily medication! Every year I pray and I hope that the test would show her brain activity is normal. I was informed last year that her abnormal readings were more than just seizure related. Brain waves are slow, just not right. Still, I believe I had hope it would all just go away.

As I sat in the room while she peacefully slept through the test, I realized I had no hope left. The seizures don't scare me anymore. Funny how your way of thinking can change so easily. After her first seizure, I didn't think I could handle another one. Now I would welcome a seizure over the unknown that is going on inside her head. I can see a seizure, this I can't, and nobody can tell us exactly what it is. I sat in the dark and cried, hoping the technician wouldn't notice.

When we were done, I got a grip on my emotions, and started planning the rest of our day together. We get home, have lunch, all is well. Mary disappears for a matter of minutes. When I go into her room, I see she has destroyed 2 shirts. So now I am back to being depressed. I packed up all her clothes and left her the ripped ones and told her I was giving them away. From picking her head to destroying her clothes. What's next??

Thursday, May 20, 2010

Time for a new evaluation

It has been 4 years since Mary's last neuropsychological evaluation. After 5 hours of testing, my husband and I get to meet with the psychologist. The evaluation and recommendations are so extensive we need 2 appointments. Our first appt. was this past Tuesday. I was hoping for one diagnosis to explain it all. We were convinced Mary had Asperger's Syndrome because she has many characteristics of AS. Well, we had a list of 9 of the doctors diagnostic impressions. I believe they cover just about every area of learning there is! ADHD, Generalized Anxiety Disorder with OCD traits, Developmental Coordination Disorder, Mixed Receptive and Expressive Language Disorder, Developmental Mathematics Disorder, Learning Disorder Not Otherwise Specified, Non- Verbal (What the heck is that!) Possible Sensory Processing Disorder and possible Autism Spectrum Disorder, and Seizure Disorder. Is there no way to narrow all this down to one thing. It's not that I want to put a label on her, it would just be so much easier for me to explain, especially to myself, if I could focus on one thing! I guess I am ADD as well! I can't wait to go to our next appt. on Friday so we can get some direction in dealing with all this. Mary is getting more difficult to handle. I feel like I am caring for a toddler. I have to have my eye on her every minute. She will leave the house without telling anyone, and she has started to destroy her clothing. Mary will pick at the hems of her shirts and shorts until they unravel, and she will rip them. I have string all over my house! Mary's pediatrician put her on medication for her OCD, because she was picking at a spot on her forhead. Well the meds worked, she doesn't pick her head anymore, just her cuticles and her clothing. What now??

Time to start school

At 4 years old, we put Mary in a traditional Montessori program in the hopes that she would catch right up to everybody. Mary did not progress, but she was the happiest, most loving, caring little girl. We would always ask her to do certain things or say things because it was so cute!
We started kindergarten 2 years later, still Mary could not keep up with her classmates. We had an educational evaluation done to determine where she was struggling. Again, more diagnosis', "mentally educable", ADD, SLD, speech/language disorder. IQ was very low in some areas, but higher in others. At age 6 it was hard to determine why or what that meant. We would wait till the middle of 1st grade to see where she is. Well, early on in 1st grade, she struggled. Mary knew she was not like the other kids, she could not keep up. My happy, confident, playful child started to disappear. Now we were dealing with breakdowns, and when she was stressed she would dig her nails in her skin until she bled. It seems she retreated into herself and was moody and sad.

Mary is my 4th child. I wish she was my first. Then I may not have put so much focus what she could and could not do. I feel some responsibility in letting her confidence fade. All I ever focused on was what she couldn't do. I would never even think of comparing my kids to each other or to other kids. With Mary it was so hard because there is such a huge difference. When ever someone would ask how she was doing I would automatically say, "Well, she can't do this, can't do that, blah, blah, blah". All the while Mary is standing right there. I don't know exactly when I realized how horrible this was, but I tried my hardest to not do it anymore. I guess I figured she didn't understand, now I know I was wrong.

During the middle of the 1st grade, we withdrew Mary from the school her brother and sister attended, and placed her in a small private school that specializes in learning disabled children. Mary was clearly much happier, just changing schools and being with kids that were just like her. No more pressure to keep up. We continued with her therapies, tried dance, tried gymnastics, & piano lessons. I wanted so much for her to do the same things everyone else was doing. Mary could not keep up, and would become frustrated.

As Mary got older, her behavior became more odd. It just always seemed like there was something just not there, something missing. It was obvious that she was awkward socially. At school sometimes her brain would be on and she was o.k., and other times, she was off. Almost as if what she had just learned yesterday was foreign to her today. We started on ADD medication. What a tremendous help in keeping her focused! However, that worked for 2nd and 3rd grade. We are in 4th grade now, and everyday it seems life gets more difficult for us all.....

Wednesday, May 19, 2010

What's in a diagnosis?

The first diagnosis I received was at 33 weeks pregnant. My baby was not growing properly, Dr. said it could be "Intrauterine Growth Retardation". I was immediately sent for a sonogram which showed that my daughter was growing fine but I had "low amniotic fluid", therefore I would be induced at 34 weeks. Mary was born 6 weeks early. This was 10 years ago.
After delivery, Mary was hospitalized for 2 weeks for the usual premature issues. Underdeveloped lungs, jaundice, body temp. control. On Mother's day, May 2000, I finally brought her home. Even though she did not reach many milestones by 3, 4, 5, months, I passed it off, figuring she was premature and would catch up. Her pediatrician at the time was not worried either. At a birthday party my older daughter attended, someone informed me that since she was premature, the State of Florida had a program called birth -3years and they would evaluate her for free, as well as cover any expenses for premature birth related issues . I went into that evaluation with all the confidence in the world that she was fine. Then came another diagnosis.................

First came, "Developmental delays", and the worst sounding, but least worrisome, "Benign congenital hypotonia" (low muscle tone). I was devestated, I was told of all the things she would struggle with. I immediately went home and googled it all. I didn't know if she would ever walk, feed herself, etc. At 6 months old, we started all the therapies. Physical, occupational, then speech. We enrolled her in a special school to ensure the most help possible. Mary walked at 18 months old, but still didn't talk.

Then at age 2, she had a grand mal seizure. So, after a week in the hospital, we have yet another diagnosis. Seizure disorder. Mary was put on phenobarbital, which turned her into a moody zombie for a year. Finally at age 3, the Dr. put her on a different medication and she woke up. She finally started to talk. She called me Nonny, all her m's were n's and all her n's were m's. It was pretty funny. We were just happy to see her smile and chat. We have not been able to keep her quiet since!

The next few years were a blur of therapy sessions, Dr. visits, testing, evaluating, etc. Mary has had every possible blood test, scans & mri's. Tonsils, adenoids removed, hole in eardrum repaired. It seems there is always something.