Monday, June 11, 2012

Medication Mistake

I am in charge of making sure that we all get our medications taken and refilled. I am usually good at this but recently I made a big boo boo. I am the one that had to suffer the consequences. We were getting ready for vacation. I called in all refills. Picked them up and filled all daily medication boxes. What I didn't know was that the pharmacy did not fill one of my prescriptions.  I did not catch this and filled my box with doses of a very similar looking medication that I had never been on before.  This medicine had been called in by my Rheumatologist without my knowledge. on our last visit she was going to check on something and see if insurance would cover it. This was a non sedative muscle relaxer. I took this for over a week thinking it was my kidney medication. I have Lupus kidney involvement therefore I must stay on Cellcept to keep my function normal. I noticed swelling in my feet which I contributed to all the driving. Fatigue was something that I deal with everyday but I could hardly get off the couch. This went on until I noticed that the pills were not the correct ones to go into my weekly sorter box. The pharmacy ran the prescription through with no problems but was told that the insurance company would not pay for it prior ... After being on the correct medicine my flare has been less noticeable. My advice would be even if medications looks similar READ the bottle. I am very careful with medication and would prefer to live without it but thankful that God has given knowledge to doctors and scientist on how to treat our physical needs.

Thursday, April 12, 2012

Diagnosis Process

When my son was three the first diagnosis that made since to me was something I saw in a book called aspergers syndrome. We got in with a developmental pediatrician who ordered speech therapy. I left thinking speech was ridiculous, he has an amazing vocabulary. Instead I enrolled him in a developmental pre school. He went part time for 2 years. By the end of 4 yr. old pre school, I took him for Play therapy.  After a couple months they suggested we get a psychological evaluation.  We then saw a child Psychiatrist who told me to read The Bipolar Child and set up therapy with a male therapist who had no children,  He agreed that the little guy was quirky, anxious and had a temper. He had no clue as to how to get this child to use the bathroom like other 4 year olds. After awhile therapy was history. We enrolled him in kindergarden. He had really bad separation anxiety.  He spent his 1/2 day of kindergarden talking about sharpies. He would tell his teacher what colors they made and what kind of points they had. He would blurt out noises in class and had a hard time sitting in his seat and doing any writing. He was put on ADHD meds. which helped him survive kindergarden but he was soooooooooooo evil when the meds wore off.  He got off the school bus threatening to blow up the school and my how his vocabulary grew that year.  He learned every cuss word know to man... His testing was very uneven. He was exceptional with word recognition, decoding, reading but his math/handwriting was not good at all. He was seeing a new therapist who also thought he met the criteria of Aspergers.  We saw the Developmental Dr. again who had no doubt that he has Aspergers.  His exact words were a psychiatrist wold give him 12 labels but the best diagnosis for him is Aspergers, sensory integration and Dysgraphia. With these labels, we were able to get an IEP for 1st grade, He was able to get speech and OT. He had a great teacher and Special Ed teacher. I volunteered all year so we made it. He was also on medication to stabilize his anger outburst.  Second grade was good too.  His teacher had an Autistic child so his behaviors did not bother her.  He had been in the same school for 4 years and knew everyone. Third grade was another story. He had to move up to the intermediate school.  He had so many changes and did not know the staff. He did not want to go to school. He would fight not to go. He was sick a lot too. He couldn't keep up with the work.  He could do the work at school with help but had no clue as to how to do it at home. He was moved away from the other kids because he was disrupting the students from doing their work. He shut down even more. He was always telling, which wasn't very popular with his peers. He was being picked on and teased. The special Ed teacher made arraignments for him to ride the Special bus to promote independence.  He was teased about this too. We went through many medicine changes. We tried moving him to the Autism class. He left the class and told the principal that he had problems but not like those kids. He was then moved into another class for the last 6 weeks. He had been getting honor roll but this teacher expected more so his grades dropped. He was still fighting us to stay home. This summer was worse with peers. Fourth grade did not happen. I went to orientation alone.  He never went.  We had home bound teaching for the first half of the year. The second teacher convinced me I could home school. We pulled him out and tried a computer program called Switched on School. It is a really good program but we had to unschool for awhile because he had totally shut down. We went to yet another therapist that we stayed with for 4 years. We did individual and group therapy. We saw a very caring psychiatrist who was recommended by the Developmental Ped. He was at wits end with meds as my son was growing.  By now we had added ADHD, Anxiety, Dyscalcula and Bipolar to the diagnosis. We continued different methods of home schooling. We saw very little Aspergers at this stage of progression.  When we started 7th grade we tested at learning RX and saw how bad things were still going. I found a program called Play Attention that would be covered by our insurance. We moved again to Christian Psychotherapy.  We have therapy there twice a week as well. He receives play attention a computer based program to help him focus. He also receives talk/play therapy. His therapist specializes in Education. She ran a long series of tests over a 2 month period. This is were we are now, still Aspergers, ADHD combined, bipolar by history, meaning he has shown behaviors, conduct disorder, and learning disabilities in Math/Writing, dysgrapia and Dysclcula. We are seeing a Psychiatrist who prescribes medication but looks at the core health.  He prescribes diet, and natural supplements. He ordered testing for EEG for food sensitivities, testing for Neuro transmitters and sent us to a Dr. of natural health for hair analysis.  This test showed that he was lacking in so many minerals and was anaemic. He was not toxic to chemicals that one would expect.  His diet has been so restricted as most children on the Autism Spectrum that he is suffering greatly.  We have added a liquid supplement/trace mineral. We noticed his coloring looked better right away. We tried a GF/DF diet with much resistance. It is on hold for the time being as it added more stress to all of our lives.  He is attending church which has always been a problem for him and anyone sitting near him. He enjoys home school bowling and wants to meet new kids.  He finally realizes that the kids who treat me bad that are nice to me today are still going to set me up.  We are making progress sometimes it feels like baby steps or some days we have regression.  But God knows what He is doing and we trust him to guide us and give us wisdom in raising this wonderful child of mine.

Friday, April 6, 2012

THINK Aspergers

My son has Asperger Syndrome. He like other kids on the Autism spectrum want to be social and have friends. It does not come naturally to them. They have to be taught social skills from social stories, social skill groups, TV/movies, computer,games and patient people who work with them on this area. These kids THINK differently. They THINK Aspergers.  My son is very animated, moody, anxious, and loving. He wants friends so badly. He copies lines from movies, cartoons, and video games.  He says things that are not appropriate and sometimes disrespectful.  He sees himself on the same level as adults. He often interrupts because what he has to say is what is most important at the moment.  He is not trying to be rude, he is being Aspergers. These times can be teaching moments if Mom remembers to THINK Aspergers and not be impatient or embarrassed.  My son is quirky as most AS kids are.  They all have special interest. That is all they think about and talk about. This drives other children away and they don't seem to understand why.  He is emotionally immature.  Asperger kids are at least 3 years behind their peers.AS kids test unevenly.  They seem so smart in some areas that adults expect to much from them. They are very literal. They are confused by metaphors, idioms and lies.  They know a script and if the script is not followed they become angry or emotionally upset.  They are easily taken advantage of and bullied. Our kids do not respond to typical parenting techniques because they are not typical.  Consequences are not something they learn from. They need us to be calm, stay sane and not react. AS kids feed off our emotions/stress. They are prone to melt downs/Rage/destructive behaviors. Medications, diet and therapy can help. 

As a parent of an Asperger child I need to educate myself in order to get the proper help and services for his specific need.  I need to pay attention to his emotions and act accordingly to prevent meltdowns, THINK Aspergers.  I need to Respect his needs even if they seem unusual or senseless.  I need to build his interest and strengths.  I need to THINK abilities not disabilities.  I need to provide outlets for his negative emotions.  I need to offer him new sensory experiences in small doses.  I need to be his advocate.  I need to allow him to experience anger, frustration and unhappiness w/o judgement or criticism. I need to respect his fears.  I need to collect my thoughts before I respond to him.  Each Asperger child is unique. Without a proper diagnosis a child will go through life not knowing why they are different.   Why do they THINK Aspergers? We as parents need to THINK Aspergers and educate those around them about Asperger Syndrome Disorder.

Tuesday, April 3, 2012

Sensory Issues in Autism/ Asperger Syndrome

Sensory Integration is like indigestion of the brain. Autistic children are affected from this every day. They can function better with help.   New situations are scary because they are unpredictable. Hard-headesness is a survival skill for these kids. Humans learn to cope with a changing enviroment by being flexible. Autistic kids are not flexible.They are very rigid, they like sameness. They appear stubborn because they are not the boss of their own body. They are not in control so they try to control us.  Their lives are full of uncertanties and obstacles that are not part of the script that they know. They have trouble adapting to lives demands. They require our attention tailored to their needs. for more information on Sensory issues.

Friday, March 16, 2012

Teens Now

I really haven't been around today's teens other than seeing the mischief of the neighborhood. I was thinking WHY did they put me with teens in AWANA this year.  I worked with 3-5th grade girls for 10 years, I feel safe there.  I didn't even like the teens that I have met.  That was September.  I had a lot of praying to do... Lord love them through me. Now, that the AWANA year is close to an end I have a burden for these kids. (teens) They live in a different world than I grew up in. Cyber World where every thing is instant.  What pressures they must feel.  Can you imagine being a girl in high school having a bad hair day/mood swings/boy problems/pimples ect. and your face being posted online for all to see.  Cyber Bullies...Yes they are your friends and enemies and we thought we had presure. Kids today can't sneeze w/o worring that someone caught it on there camera phone. How do we expect them to be respectful? They have not been taught RESPECT for GOD, parents or authority figures. They hear so much disrespect from those in charge that they we are reaping what we have sown. We grew up with dress codes at school. We stood with our hands on our hearts to say the Pledge of Allegience to the flag.  We were allowed to pray at school.  We said yes sir. We did what we were told or there were consequences.  Not sure how I got on this but was trying to say life is different than when we grew up.  They need safe places to go because they will find places to hang out.  They need role models who are not Bad Examples. They need youth groups where they are loved and accepted for who they are. Places where they can learn how to live  and be what God intended them to be. They need our love acceptance and prayers.

Todays teens are not the bad people I expected them to be.  They are stressed, children in growing bodies trying to find out who they are.  They need our help.  If not us as Christians the worlds. Whose view do you want for your children and grandchildren?  I was taught at a very young age, :Don't let the world around you, squeeze you into it's mold."  This is what I wish for our teens.