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Wednesday, September 29, 2010

Increasing meds and I am scared!

Well, still not feeling good about the practice we are using to help Bryn.  It just doesn't seem they are giving us any skills we can use to lessen anxiety.  All they have given us so far is a chart that Bryn will put a happy face on every time she gets ready in the morning without a fuss or fight.  If she get's 3 smiles/week, she gets something out of a treasure chest at their office.  Big deal.  I could do that on my own.

Now since she isn't magically well adapted because of the 2.5mg of Prozac, she gets more Prozac.  UGH!  It's getting bumped up to 4mg.  I am afraid this will affect her in a bad way.  She already seems more irritable, more defiant than before meds.  She can't sit still for dinner, she fights with her sister more........

I asked the play therapist when given the chart, "what tools can I use if the fussing and fighting continue?"  The answer I got was just talk to her about how going to school is her responsibility.  "School is safe" blah, blah, blah."  I ALREADY DO THAT!  It doesn't work.  It doesn't calm her down.  It doesn't help her want to go.  I didn't think bribing was good for SM treatment.  Isn't that what this is.  Sure, we are not bribing her to talk..... but I am just so confused.

Thinking about seeking help elsewhere, but I know "new things" are hard for SM kids.  It will be like starting all over again.  Also, way farther from home.  We are already having trouble making all the appointments work.

Confused as usual.  More questions than answers.  One fuss free day long will it last.  Waiting for the 1.98 steps back since the 2 steps forward.

Tuesday, September 21, 2010

News from the teacher....

My email to Bryn's teacher follows:
Now that Bryn is making it to the classroom unassisted, how are things going once she arrives? 

How are specials going?

Have you had any luck with her reading aloud to you?  Have you tried yet? 

What is she like on the playground these days?  

She mentioned a fire drill.  How did that go?

Did she seem nervous at all during the spelling tests?

Please describe any talking that occurs.  

We have another doctor's appointment next week.  I would like to be able to provide some information on how school is going. 

When we arrived late that morning last week, I heard a child say, "she doesn't talk much."  Has this happened other times?  Has Bryn heard statements like these?  Here's the answer I like best, "She speaks a lot when she is comfortable. She will talk when she is relaxed and ready.”  I think I sent this before, but wasn't sure.  I also have books that could be shared if you think you want to do that when Bryn is at her next doctor's appointment.  I am not sure if that would make her classmates more likely to make her feel uncomfortable or what.

Teacher's response: Bryn comes in with a smile and gets busy on her work.  She seems very comfortable most days and chats with friends all day long.  The only situation that seems to give Bryn anxiety is adult males.  She got upset last week when we went to Spanish with Mr. Casey and Mr. Beattie (gym) said she still will not participate in class.  I am not sure if this is something you see at home but this will impact academic progress as there are many male teachers now in our building and more as they get into middle school and high school.  Do you have any insight into this specific situation?  Special area with Mrs. Hammess (Music) and Mrs. Simmons (Art) seems to be going great. 

I have not had any luck having her read with me individually.  I have tried but she would not respond.  Did she ever read with her Kindergarten teacher?  She was very excited to take home her reading book today so hopefully she will read with you or her dad.

Fire drill was fine and she didn’t seem anxious at all.

She is mingling with friends and playing on the playground.  She talks, laughs and has a great time with her friends!

Lastly, I don’t think the kids think much of her being quiet because most of the time she is not.  She still doesn’t share during community circle but other than individual times she is just as chatty as the other students. 

I hope this answers the questions below and gives you some information for your appointment.  She is doing a great job and doesn’t seem upset when she comes to the room.  Please let me know if there is any further information that would help out. 

Me again: There is some great news here, but as always, I pick out the little part that seems to say to me, "the teacher doesn't get it, she thinks this is all BS."  I am just so defensive about all this.  I just get so mad.  Well duh, it will impact academic progress.....  We are working on it now.  Hopefully this will all just be dust behind us on the road of life soon.  

Monday, September 20, 2010

mellow? or meltdown?

Bryn used to be a fairly mellow child.  Not much would cause a meltdown.  She would do what she was asked to do without throwing a fit.  She would fall asleep at night without much effort.  I notice a lot more little things like asking her to set the table now, cause meltdowns.  It is also increasingly hard to get her to sleep at night.  She used to let us out of the room willingly, now she begs us to stay, cries and gets up a lot.  She is also a lot more likely to talk back now.  If I ask her to do something, she will scream, "No" in my face.  She never used to do this.  I don't know if it's the prozac causing these changes or the new stress of being at school for 7 hours a day.  It seems I notice it less on the weekends, but I can't be sure yet.

The doctor is going to want to increase her medication, and I am not sure how I feel about that.  I have read a lot of kids don't do well on the higher doses.   Did she just feel to anxious to do all these things before?  Now with the power of Prozac, she is going to be a terror.  What a trade off.  I feel like I have to start all over training her on what is acceptable as if she were two.  It's very strange and confusing.

I am considering some "Super Nanny" type system where she earns tokens for good behaviors and gets tokens taken away for undesirable ones.  I have no idea how this will go.  My gut is telling me, it will cause a lot more tantrums in the beginning.  I have no idea if I should be doing this or not. I feel like she is getting away with a lot of things these days that I would have never put up with in the past.  Her 10 year old sister has seemed pretty miserable lately too.  She is rarely happy at home, stays in her room a lot and is very short tempered.  She seems to be discouraging Bryn more now than ever.  We need to fight this as a team and with a united plan, but I don't know how to get everyone on the same page.

The word page reminded me.  I have a little free time, I need to get out the book, "Helping your Child with Selective Mutism" and start reading.  I need help!  I feel clueless, inept, frustrated, sad, and confused as usual.

Friday, September 17, 2010

I am one happy mommy!

Finally a break in the misery.  We had success with the new medicine.  I was blessed with some wonderful clarity the first morning Bryn was to try the new medicine.

She woke up on her own which is a huge blessing!  Usually I have had to make repeated trips to her room to get her out of bed.  I told her I was going to teach her how to take her medicine all by herself.  I started by showing her with water how little the dose was.  It's .675 ML.  You could hardly even call it a sip.  Then, I let her just fill and squirt out the dose with water.  I then, filled it with water and squirted into my mouth.  After she watched that, I had her smell the medicine.  We agreed it smelled just like a sour apple candy. I showed her it was clean just like the water.  I asked her if she thought she wanted to practice with water to see how it felt to squirt it in her mouth.  She did that for a while, then I said when you are ready to try the real medicine, let me know.  She did so pretty soon.  I made sure she had the right dose and went about my morning business.  Before I knew it, she was grinning and so proud of herself for doing it all by herself.  I was celebrating and dancing on the inside, but just gave her a high five.  I have been so successful when I can have the clarity to break "trying new things" into baby steps.  I sometimes forget to do this though.

She had been having trouble getting out of the van at school.  The expectation was that she needed to jump out at the curb and walk to her class by herself.  The same morning, she did that all by herself too.  Here's how that worked out.  I had told her play therapist that I couldn't get her to stay at school after our last appointment.  Bryn's teacher said to just take her home.  I did.  The therapist recommended having someone meet Bryn at the van and walk her to class.  I told Bryn about this and asked her who she would feel comfortable with.  She said, "I'll just do it myself."  I also added an incentive that if she did this every day of the week, she and I could have a sleepover.  I must admit, I had my doubts, but Thursday she just jumped right out and walked to class!  WOW!  More silent celebrating.  Making huge progress these last two days as she repeated these successes again today.

I can't even describe what a high this was after so many lows.  I was soooooo happy!

Thursday, September 16, 2010

Sour Apple Liquid Courage

Well it's been several days since Bryn took her medication.  She requested the tablet be crushed and placed in her food.  That worked for a few weeks.  Then she decided she would look for it.  If she saw it, she wouldn't take it.  I got pretty good at hiding it and she took it without knowing she had for several days.  Then she asked me one night at bedtime, "have you been giving me my medicine?"  I had a small window of time to decide if I would lie and say no or tell the truth.  I chose the truth.  She has refused breakfast ever since.  Wouldn't eat anything.  Great way to start the day, right?

The days don't end so great either.  The 4 hours I spend with her after school haven't been very peachy.  She seems to have a super short fuse. Has been downright mean and scary.  Bedtimes are no longer calm and loving.  I don't know how much of that can be attributed to the stress of a 7 hour school day or the lack of medicine in her system after having it for a while.  Maybe just a bad combination of both.

Well, I finally told our play therapist that I thought it was unrealistic to expect a 6 year old to take a quartered tablet that tastes like crap.  She agreed and spoke to the prescribing doctor and now we are going to try sour apple  flavored liquid Fluoxetine for the first time tomorrow.  I am going to let her do it herself to lower the anxiety.  I hope and pray she will be successful and we can get on with the treatment and lower the morning anxiety.

If you are the praying type and are reading this before 8:15 AM Eastern Time, please pray, Bryn will take her sour apple courage and that if she doesn't, I can stay calm, loving and supportive.

Tuesday, September 14, 2010

From burping chicken to school induced tears...

Today Bryn had an appointment with her play therapist at 9:00.  This meant, that following the appointment, I had to take her to school late.  She seemed happy to go to the appointment.  Even excited.  She loves this chicken that burps in the therapists office.  I spent 20 minutes in the office, then Bryn spent 40 alone with the therapist.  The therapist reported a good visit and asked how school was going.  I shared with her that when I asked for one word to describe Bryn's previous school day, Bryn replied, "awesome!"  Those were my last words with the therapist and out the door we went.  As soon as we got in the van Bryn began crying about not wanting to go to school.  I managed to calm her down before we got to school.  She asked me what home school was.  I told her, then she said, "that's what I want to do."  I explained it was her responsibility to go to school.  (Only because, I have read that's what is recommended for SM kids.) She said, "I don't like my school."  I tried to find out what she doesn't like, but all she could tell me was that she doesn't like specials: gym, art, Spanish she does like music.  Another calm was achieved and we went in.  I said I would stay for the story.  At the end of the story....she had more tears.  Another calm down....walked her to lunch with the caveat that I would leave as soon as she got seated.   More tears....the teacher said we could just leave.  That's what I chose.  I had a tired 12 month old on my hip the whole time ( more stress).

The old me, may have laid on the guilt.  I made a conscious decision to not show any disappointment or make her feel bad.  Things I am sad to say I did in the past.  As soon as she knew we were out of there, she was happy and skipping down the sidewalk.  I chose at that moment to just have fun with her all day.  As much as we could anyway.  I enjoyed my time with her.

When my husband found out that she didn't go to school his response was that she is controlling me!  More confusion.  I just didn't think walking away from a crying child in the lunch room felt right.  I wish I had more support and tools to help.  I am still feeling inept to cope with all of this.  My husband is taking her to school tomorrow.  This scares me.

Before I knew he was going to take the kids to school, I started at square one as I did prior to the beginning of school.  We practiced getting out of the car, and walking into school all by herself.  My hope was to build confidence that she could do this.  The halls were empty, after a few trial together, she took the long walk solo! .

So tonight as I prepare for bed, I am crying and praying for a good day tomorrow.

Monday, September 13, 2010

My child has what?

My daughter, Bryn is a wonderful child. She is smart, funny, thoughtful, sweet, and talented among other things.   However, not many people know this.  Why?  Because Bryn rarely talks to people outside her immediate family.    For the longest time, we thought she was just really shy.  However, recently we have learned of a condition called Selective Mutism.  Selective mutism (SM) is a severe childhood anxiety disorder in which a person who is normally capable of speech is unable to speak in given situations, or to specific people.  Bryn received an official diagnosis for this condition at the beginning of August this year.  What does all this mean?  Your guess is as good as mine.  Some people think this condition isn't real, including the pediatrician that recommended the Psychologist that gave the diagnosis.  Most people have never heard of it.

I don't know where to start as my head is full of all kinds of information and feelings.   I feel guilt, sadness, pain, heartache, confusion, and anger to name a few.  I wish I could ignore the feelings.  It is hard for me to hold it together most days.  When I start to talk to someone about Bryn, I break down and tears fall.  When I try to talk to Bryn about it, I break down and tears fall.  

I feel guilt, because as her mother, I feel like I created this child and molded her into the person she is.  I LOVE HER!  However, I just don't want to see her suffering like this.  Where did I go wrong.  What did I do to make her this way.  Did the genes my husband and I passed along, make her this way?  That's where the guilt comes into play.  

I know any mother will understand the sadness and pain I am feeling.  It is just so sad and agonizing to see your child suffer.  She doesn't want to go to school.  She is to afraid to try new things, even fun things like bowling and bounce houses.  My heart just aches when I know she would like to do something, but can't.

I find myself confused at every turn.  I read things on the internet and in books about how to treat this anxiety disorder but this is not how the professionals she is seeing are handling it.  They are not offering us any help with day to day life.  Some think medication, some don't.  It's just confusing.  

I am just ANGRY that this is happening to my sweet kid. She has a great personality, but doesn't feel comfortable showing the true Bryn to the rest of the world.  Childhood shouldn't be so hard.  A 5 year old shouldn't have such trouble!