As of thursday I will FINALLY have my life back as just being mom. HIs support specialist comes to our home thursday to begin his new plan as well of tons of resources for us.
No more doing all the stuff I was as far as my sons care goes his support specialist takes over all the aspects of his medical care and I just show up. No more calling places, setting appointments geting authorizations running around for release of information forms he covers it all.
I just get to be mom. I get to go and enjoy the services offered to us. I finally get a chance to sit back and soak it all in and use this time to help my son and our relationship get stronger because of it. If I need something done or a doctor recommends it I call him. He handles the rest I have to give up control of the situation somewhat and I am relieved and nervous generally because I have let it others hands before and they have failed us I won't tolerate that.
I will say it will be a switch for me I am so use to doing it all alone. And to be quite honest I am at my ropes end with it. It is way to much but I have always been that I won't wait around for someone else to do it I'll do it my damn self kind of person. I hate depending on people. But for myself and for nick I need to here. I was exhausted and bitchy I have been such an easier calmer person since things have slowed up. I am definately looking foward to giving this guy control of the situation.
I know I do more than I "have" to with nick but it's the extras that have really shown progress in him if I had been doing it and seen no change I of stopped long ago. He is in such a different place right now. Just typing this brings tears to my eyes. To think of where he is and just the changes I see it gives me hope that he will overcome this and he will he okay in life. He truly inspires me with all he has been thru he still holds strong he is so resiliant I mean at first it is hard for him but now he strikes it up with pride I am so proud to be that boy's mom.
He accepts so much responisblity for himself and even when he lacks it he acknowledges his own faults instead of blaming others. I boast that to all the staff that have been working with him and with me. I will say the break from mental health and pysch appts has been nice but he needs that follow up. He sees his family doc next month just to update him where we are at and what plan is in motion it is all falling in place.
Then the end of next month starts a new chapter we go down to hurley neuroscience to begin his neurological consulation and to start the testing which will include the formal autism testing. This added piece of information is going to be vital for nicks future as we have determined this is not a behavioral situation. This is involving the neuro transmissions or lack there of in his brain. The behavior is just a reflection of this but not the sole problem.
I am anxious and scared at the same time. I am afraid of what they will find I am even more afraid of if I will handle it or not. I am just scared in general but I always get this way when new things begin. I think it is normal as a mom. They will begin with brain scans and things like that. Perhaps the neurologist knows of better medication regimins for him. His is working okay but not enough for what I would aquire it too. Because my expecations with medication are high because we have seen strong success with it in the past. But right now he is leveled out on his meds and I am kinda concerend. All that with time will resolve itself.
Well here is to new beginnings and new found fears and a glisten of hope ill update soon! Wish us luck!
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