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.