During My Absence

 

I have struggled as to what to say and how much to share, but I also know at the same time many of my followers have also followed along as we have moved forward with understanding Selena. I am not going to share everything since much of it is very private, and that would in no way be fair to Selena.

We have had many concerns about different things with Selena since she was 3 years old. Some things could be considered age appropriate, though at times these concerns went beyond age appropriate. As she has grown and gotten older some concerns faded to be nothing, while some have become more problematic. Over the past couple weeks things escalated to a fearful state and it was time for reevaluations to be done. I must say it has been a rough time traveling upwards toward 3 times a week to specialists and doctors. We have come along way and understand this will be a life time battle for her.

So here is what we know so far:

1. ODD (Oppositional Defiance Disorder)
2. Anxiety Disorder
3. OCD (Obsessive Compulsive Disorder)
4. ADD
5. Mood Disorder (Bipolar)

It has been a rollercoaster in our home from and very scary at times. While I do not promote the use of certain medications in children this age, I also know sometimes we just have to weigh the risks and benefits. Things here got so intense that we had to give in and allow the psychiatrist to prescribe a mood stabilizer.

Thank you to all who have been supportive.

Update on Selena

We have met a couple of times now with the Occupational Therapist and while we do see sensory issues, from observations she feels many of these may be from anxieties. We discovered real fast that unlike most children with SPD who need stimuli to calm them,Selena is the opposite and needs the stimuli removed. She needs a quiet place where she can go and read, listen to soft music, or do some pretend play. We plan on purchasing her a small tent that we can easily set up here in the house, which can be her calm space.

Yesterday we met with the Child Psychiatrist, who quickly caught onto Selena’s OCD, and agreed with the OT that many of the sensory issues are probably anxiety related. Due to the fact that we have had such an interruption in our lives and of course Selena’s from her anxieties, even to the point she breaks out in hives or screams from a stomach ache, he discussed with us the use of some medications to try to control the anxieties. We truly had hoped to deal with this without medication but as time has gone by both Papa and I had come to the resolve that medication for anxieties probably would be needed for a while.

At this time he doesn’t feel counseling is needed since we do have a great open communication in tact with Selena and she does feel free to ask us many questions about the things that bother her. So long as she feels comfortable talking with us, and we are able to continue to read through her questions and answer them to help her feel better then counseling truly is not necessary.

We are very pleased with our decision to seek a new Pediatrician. Thursday truly showed to us that we had made the right choice. Selena came to me on Wednesday with an ear ache. We got her in Thursday since I just had a feeling it was wax build up, which it was. I was so pleased to watch as the Pediatrician and nurse worked with Selena for nearly an hour, to irrigate her ear to get the wax out. They took the time to listen to Selena’s worries, fears and even allowed her to verbalize when her ear needed a break from the water. Their compassion for her anxiety level, and their mannerism made it so much easier for Selena to meet the treatment head on and she came out feeling proud of herself for being brave.

We all feel we have been sent to the proper specialists that can help us to understand Selena, to see just how this gifted child ticks, so that we can get her on the road to a very quality life.

Finding Time to Blog

Remember this post when I finally came open with the many sides of Selena. Well, we discovered that the melatonin they tried her on to help her sleep actually ended up making her OCD and anxieties worse. The Pediatrician we were going to didn’t have any answers that I could absolutely except. After have a couple nights this week where Selena didn’t sleep as well as she should have which made for two very trying days we decided it was time to get a second opinion.

Today we met with a Pediatrician that we had seen when Selena was just a baby, but due to the drive we had switched to one that was easier to drive to. Anyway I was very pleased to drive the hard drive to take Selena back to Chehalis to see this pediatrician. She spent about an hour with us, asking many questions and observing Selena the entire time.

Instead of telling us to just put Selena in more sports and get her more active in things that seem to make her anxieties worse, she suggested taking her to their psychologist that they use as well as taking her to University of Washington for further screening. She dismissed the need for an IQ test just like we did, as well as didn’t like the idea of having to wait until Selena is 8 before trying to do something to give her some help with all these anxieties.

I like the fact that she wants to make sure that we are not dealing with ADHD, Autism Spectrum, or Aspergers. While I feel we are not, well maybe a little ADHD, it is comforting to know that this pediatrician is going to look into everything and totally come to understand Selena for who she is before suggesting any type of treatment.

I am always reminded when I am graced with the struggles of raising a little girl who can rob herself of so much richness due to so much stress and anxiety that she will grow to be just fine. That so long as we don’t just except what we are told and keep looking for better answers and better solutions, somehow we always have someone placed in our path to do just that.

I know my blog has suffered a bit during all of this, but I know my time with Selena is exactly what I am suppose to be doing. I also know that things will get back on track and I will again be blogging and sharing just like before. I remind myself that once again I am just in another season of life raising a bright, healthy little girl.

Homeschooling and Living with OCD

We have suspected for many years that Selena suffered from OCD. We would see times of habit, ritual, rigid schedules, perfectionism, and anxieties. Selena had a very hard time adjusting to our move to our new home, and we really began to see even more signs of OCD tendencies in her. At times it got to the point that it was hard to take drives in the car, as we would wind up with a little girl so stressed out she would be screaming at the top of her lungs. She has finally learned to take a few deep breaths, and while she complains of an upset tummy she will fall to sleep allowing us a pleasant drive. She didn’t like to be out after dark and would complain that it was way past her bedtime and have a complete melt down from not being home.

The past few months have revealed even more evidence towards these OCD tendencies. Our sweet Selena suddenly started waking many times through the night and very early in the morning. She was getting to where she never wanted to leave home or not much anyway unless she knew exactly where we were going and when we would be home. She had to know exactly what we were going to do, what we were going to get and how long it would take. This also led to issues of having to use public restrooms, as well as would we be home in time for her to eat her meals.

The stress from her OCD was getting the best of her, the once little girl who could be consoled was becoming less consolable. Sleep was getting to be a rarity in our home as well. We finally made an appointment with our Pediatrician who after observing Selena playing with some paper cups, and listening to our concerns recommended putting Selena on Melatonin for sleep at night. She also pointed out what observations she was making that led her to believe Selena was OCD. (Now keep in mind this will not be totally an absolute diagnosis until she is between 7 and 8 years old)

Our first week on the Melatonin was a dream come true. Selena was sleeping, had more energy during the day and seemed to be doing fine. After the second week, we began to see things we did not like, aggression, heightened OCD symptoms, and a lack for self safety. We had to adjust the amount of Melatonin we were giving her. We feel we have found a healthy balance, while it doesn’t always take care of all the sleep issues it does allow Selena enough rest to cope through the day.

So what things do we see with her? The list below is just a few of the things we deal with on a daily basis:

1. Bedtime ritual of having a specific time for bed, no exceptions. Pillow has to be fluffed just right and positioned just right. The covers have to be straitened at least twice even though the bed was made that morning. Bedtime story, so many kisses and hugs, and the same ritual of goodnight words must be said.
2. Meals are another challenge in it self. New foods must be on a separate plate from her normal food. Her food can not touch, so we have to be careful to keep everything separated with enough space in between foods. Do not even think of reaching over into her space to help her with anything, that all has to be done before the plate is given to her. Don’t let her watch too closely to food preparations as if she sees foods being cooked together she won’t eat them. If her food touches or something she doesn’t like ends up on her plate, she is automatically done eating.
3. Fear of using a public restroom or a bathroom outside of ours in the home. This seems to be connected with how will the toilet sound when it flushes, will it be loud or echo. She tries to plug her ears and flush at the same time. She shakes from anxiety, or gives up and won’t flush at all.
4. Fear of getting her clothes wet.
5. Having to have everything in a pattern that meets to her reasoning. Sorting, the way she puts things away, arranges things, and nothing in between. Her books and toys have a place, and there is no changing that at all.

An example of what an outing looks like for her and I. We went out today to buy her a new bat and a batting helmet for softball. She knew this meant we would go to Big 5. We arrived 10 minutes before the store opened. She started to stress, her anxieties rose, and she just knew she would not get a bat and batting helmet that day. While I assured her we were just early and she would indeed get her things, it wasn’t enough. I told her let’s go see if we can get your hair cut first, when they couldn’t get her in for over an hour, I decided to schedule that for the next day. Now this really threw Selena over the top, “I can’t get my hair cut, I can’t get my bat or my batting helmet. What am I to do?” I could hear the tears just surfacing. To take her mind off the wait we drove to Safeways and picked up what we needed for dinner. Upon returning to Big 5 she discovered they were open, she could indeed get her bat and batting helmet. We also got her a pair of shoes, but by this point she was too worried about getting home in time for lunch. Knowing she had been under so much anxiety we didn’t stop to do anything else but came home and fixed lunch. The afternoon should be pretty quiet until it comes close to dinner time. I will have to fix her something totally different from what we are having, because she refuses to eat red meat now, but I will still have to offer her a little bit of our food on a separate plate, even when I know she won’t touch it.

Homeschooling is just as exciting. We must start our day at the same time 8:00 a.m. She gets upset easily if she is having a sloppy day and her writing doesn’t look as nice as she wants it too. Since we have been working on subtraction, she does not appreciate having addition problems thrown in the loop. I do have to say though that homeschooling so far has not been as affected like other areas of her life.

Outings, she is always worried we will be late, even though we have never been late to anything. She worries about where we are going, who will be there, what the bathroom will be like, what the noise level will be, will she have fun, what will there be to eat, (did grandma pack a brown lunch?) as well as what happens should she spill a drop of water on her clothes.

My heart breaks to see her go through this, I wish I could just take it all away from her. Though knowing and understanding it more is the power to have less stress in our home and for her. I have found a lot of great information on line, and have a good friend who has a daughter just like Selena which helps to get ideas and just talk to. When I discover some great sites that I find to be very helpful in dealing with a child with OCD, I will share a post of resources, but right now I am still just researching.