My Family....

fall 2008

Our Story

Nicholas was my first child born. He was only five lbs one ounces at birth and had breathing troubles that later turned into chronic asthma.I ended up raising nicholas at a very young age alone. I left a very volitale and abusive relationship with his father. My hope was taking him from that situation would make our lives better. I had no idea at the time what I was in store for as nicholas battles would be come harder and harder as life went on. Nicholas always struggled to meet up to his peers. He was a happy baby though always silly and fun. But at age three something changed. He became almost unresponsive to redirection. I constantly struggled to keep him on track or to even get his attention. He was defiant and never followed directions. School was always a struggle and I always blamed the daycare for what was going on and sat in a pit of denial. At only three years old he was kicked out of daycare because of his behavior. I knew that day something was seriously wrong. I began my struggle to understand what was going on with him and how to fix it. I started with simple reward systems, diet changes, herbal supplements and intense counseling it masked the problem but nothing seemed to work.Things seemed okay for a while but they really began to change. He started to get aggressive and easily flustrated. He constantly talked back and could not handle social situations or changes. I made the gut wrenching decision to begin ritalin medication of concerta. It was a drastic mistake he had a very rare reaction to the drug. Within minutes of being in sunlight he had third degree burns across his his forhead and nose and checks the skin started peeling away from his face within minutes. He began acting sparatic and uncontrollable emotions emerged suddenly I received a panic call from his preschool.Once I got him home it took myself and my grandmother along with my mother to restrain him. He was screaming hysterical and crying I had never seen this behavior before. His eyes were glassy and his heart was racing out of control. I rushed him to the emergency room to seek medical assistance. They told me he had a reaction almost like being on speed the doctors could only watch the meds take their course and prepared me for a very long night. Their was nothing they could medically do. It was the most frightful night of my life. I held him as he screamed and cried uncontrollably and restrained him when his behavior became untamed. I cried for hours watching him I felt so helpless and afraid I was going too loose him it was four thirty am before I was able to get him to sleep. That morning nicholas awoke around ten completely lathargec and his breathing was slow. I called the family doctor but she was no help. I knew to never try these drugs again and it was years before I allowed doctors to try a then new drug out strattera which was a miracle drug. Finally he was controlled through this medicine but it took a lot more to get us there. But even that lasted a short time.After our frightful bout with ridilun I kept pushing the counselors to search deeper but no one would listen but I never let up. One of the aides at his school quit because she was so stressed out by him and his behavior. He was jumping off tables throwing toys and his behavior was borderline psychotic. I removed him from the program for a few weeks but nothing helped he returned and I began utilizing the school system.When nicholas entered kindergarten I was blessed with the knowledge and wisdom of a what most would call seasoned teacher. She immediately recognized the signs of his problems and became the voice that would begin a process I as in no way prepared for but desperately needed. After months of fighting I finally got the school to do testing at kindergaten level for beahavioral problems and he was diagnosed ADHD. I knew this diagnosis was not accurate but with it he began to receieve resources through the school district that are still implemented today.Since this diagnosis I have switched one family doctor and two counselors to the one we have now who is by far amazing but other diagnosis have been added include Bipolar and PDD (pervasive develeopmental disorder). Both of these conditions are serious conditions the PDD is on the autistic spectrum (don't even get me started on that) but not considered true autism and the school to this day is non compliant with any diagnoses of ASD. Since I have not went through FORMAL testing for this condition he is still labeled specific learning disabled (sld) they may add cognitive later on but the emotional disabled is what I am fighting to have proven. His las IEP testing was done shortly after our home caught on fire last year. We lost everything including the home and all contents as you can imagine this was devastating for him. The rules state to emotional disabled testing can be done within 6 months of a traumatic incident. We are now at six months so the push for that testing has begun.Nicholas has been diagnosed symptomatic of autism particularly Asperger Syndrome and has been labeled high fuctioning autistic by both his family doctor and his psychiatrist. In fact everyone on the planet sees the autisim in him EXCEPT the school so to shut them up I will fix that. He can make eye contact and his behavior has been modified at times. He still cannot control his emotions and social settings are still a complex situation for him. Processing is difficult for him he cannot move from one thing to the next quickly there has to be a complete break form one event for him to move on or he gets lost in the clouds.For instance if he is writing with a pen and you ask to use his pen he cannot hand you the pen and move away to another task. Instead he will sit there requesting it back frequently and make subtle remarks to the fact he was using that pen for this or that reason. He will get disgruntel and if time enough passes he will merly try to take the pen back himself as oppose to it being given back. He simply cannot break away in a timely matter from what is in front of him once he has interest in it.He cannot handle suspense, loud noises or change. He gets fixations on specific things and goes with it as expressed in the ink pen situation. He is at a reading level of an fifth grader. He can udnerstand complex stories and books. He is currently writing the script for star wars 7 in which he plans on holding on to and directing when he gets older. His math skills are poor in fact he is repeating third grade this year because of the trauma of the house fire he was not able to recover and meet basic standards to move on. Yet he is still doing second grade math and cannot do cursive writing.After years of begging and counselor changes and moves here and there nicholas is finally getting the testing we need. I am happy to say that neurological testing will be done the date is to be set within the next few weeks. This testing will allow us to pinpoint what is going on with him and how he processes the world around him.In the meantime he will conintue to receive all the services he has. I have located an advocate for him here in town.and also have him authorized for disability services through our local community mental health facility. I still let him play sports. Even though he is not the star of the team the acknowledgment alone makes him feel accepted. I will continue to put him in activities like this and the more I do so his ability to fit into social settings shall progress as they already have.He has a good medicine regimen and he still sees his counselor and psychiatrist and family doctor. At school he has three hours a day in a resource center and the rest of the time he is in the regualar curriculum room. I do have him riding the bus this year to and from school which has added a good sense of responsibility to his day. He receives occupational therapy, physical therapy and counseling at the school.We do various activities and I let him live as normal of a 9 year old boys life I possibly can NEVER treating him as a child with a disability. My method is simple push him far if I cripple him he will never get anywhere. I have seen a response form him with this and the harder I push him the harder he pushes himself. Always seeking recognition his prayer was answered when the school told him he was selected to be an aide in the 3-4 year old preschool. Because of his medication nicholas is much calmer he is a sweet loving boy who loves hugs. He is not afraid of touch and we use the brushing technique with him. He absoluetly loves his baby sister. The school has seen his interaction with her and thinks this technique of using the aide opportunity for compliance in the classroom is just what he will respond too. During his time as an aide he will assist with crafts and read books to children. It will give him the big brother status at school he misses when not at home. He is not a danger to himself or others which makes him and ideal candidate. He is also a reading buddy for a kindergartner.I will continue to follow our plan we have in motion now and as I already know that can change. I am optimistic of this testing and YES I would love it to come back that he has NO signs of autism BELIEVE me I am okay with that but for the mean time i have already began falling into place as a mother of a child with this and even if he is not diagnosed with this disease I will continue to help other parents.If you think you're child is autistic here is what you Consult with doctors and the school Find an advocate in you're area to assist you with the process Push for autism testing through the school or counseling center Make sure to keep you're child in with a counselor and a psyciatrist Try to use as many resources in one place as you can for instance his counseling center, advocate and DD services are all affiliated with one another so their is no lack of communication.I hope this helps you and I will write more soon

Friday, January 2, 2009

Is it fate...destiny or insane karma?

I can't help but wonder is life reliving itself right now......

Two years ago in February will mark that dreaded anniversary of our house fire and I feel like I am reliving my life from then.... allow me to explain my thought process here ....

It began before Christmas when I decided to start replacing specific items my children lost in the fire. I have bought a lot of "like" Items but nothing that was really really the real thing.

It started with a gaming system I hated the xbox 360 my mom & I got him for his birthday and for ages wanted a gaming system where my son was not sitting on his but all the time. The wii cam along and it was like an answered prayer. What i love most about the wii is it is a family system so even my three year old can play especially like sports easy for her to play. Along the same lines he had hand held game systems like the gameboy sp again games that really didn't bring anything to the table to teach and learn from...then came the didji from leap frog all games are learning games and to complete a level you have to complete math problems or spelling words. I honestly could not buy this thing fast enough yah it's a like item but much better of an improvement from power rangers and such.

So i bought the wii and the didji and I am very very pleased with my purchase....
I also was able to replace the shopping cart she use to push around and play with that was a huge suprise to her....the other big replacement was that glow in the dark football nick had lost he loves it and has not put it down since he got it christmas morning!

See at christmas before our fire and nicks birthday I went a lil over the top and bought really nice gifts like the game of those fly pen top computers only to loose them in the fire. Again this year it is great to be able to buy these things and then this happens.....

Nick has a friends birthday coming up this weekend and so the other day I went out to toys r us to buy a gift for the friend. I always stop by their learning area especially leap frog since that is my favorite brand for my kids and besides toys r us is known for their insane clearances you can get a lot of great steals there.

And there it was!!!!!!!! The steal I never anticipated. On the bottom rack, last one there and almost out of sight was the fly pen ultimate homework pack. In it was a fly pen...the notebook.. five cartridges including the spanish *nick loves that class in school.... and the music game and a total of 13 built in games. The box said the original price was $99.00! But the sign said it was on clearance for $24.98 yet their was no clearance tag on the box and I assumed it to be wrong.

So I went to a scanner and it rings up for the $99 i was disappointed, I would have LOVED to replace that for nick. I continued my shopping regardless. I get to the check out and have my items and paid for them. And there sits the fly pen box in my cart still. I must admit that still is a great price and gosh that would be great to replace this for him. But did I really want to spent that much money on one birthday gift?

So I walk over to customer service and ask the guy why it was marked on a tag for that price and not ringing up at the price. So he scans the box and sure enough it ran up for the $99. I began to turn away when the sales guy says ma'am WAIT, apparently when he hit total it came up at the sale price for the $24.98 and without hesitation I said I WILL TAKE IT!!!!!!!!!!!!!!

OMG to think I almost passed that up and now I have yet again succeded in replacing something so amazing for nick. I literally FLEW with glee out the door just glowing like the cat who ate the canary lol!

But back to the title of this blog is this karma? Perhaps its meant to be. I must say it does have me really spooked out! Even my grandma went ooohhhh thats a little too much like the past.

I am just hoping it is life meant to be back to us in some small way a little more closure for kids who just didn't understand our circumstance and the magnitude of our loss, and bring back some joy to them. I guess this could be a means to an end.....

So I am thinking anniversary date of the fire....maybe maddy can run her shopping car through the house...I can do my wii fit and nick can play with his fly pen top computer,..... ahhhhhhhhhh yes fate it is!

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