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

Thursday, November 8, 2007

Three strikes WE ARE OUTTA THERE!

Today was the day of I am not taking this crap anymore! Today I hit a boiling point. I was so exhausted this evening I cried to sleep I haven't done that in forever. Kind of like the emotional hang over I have been refering to that is how I feel. Parenting is never easy but when you have a special needs child it is draining to say the least. I am constantly at battle with doctors the school you name it I fight them and today I won my fight a little more.
It began last may when after our fire nick hit a hard depression and he had alot of needs as far as counseling goes medicaiton etc. Problem is our health insurance only allows so many visits per year and we had more than whiped those out. His counselor more than assured me comm mental health will step in. For a month I kept in constant contact trying to get more appoitment approval. On his psychiatrist visit in may they reput him on the only medication that worked. I walked to the front desk I had actually ran into his councelor the week before at walmart. He told me he was going on vacation for a few weeks so to please schedule something. When I requested to do so they informed me that the week prior he had walked in told them the next day was his last day and quit and went on to a different job. STRIKE ONE!

SO I was livid but what can you do I was assured he'd be given a new conselor that was in may it was july before I went over their heads and got comm mental health to cover his appts and august before we were assinged a new counselr that's three months no therapy and into september. Since may we have had 2 counselor appts four were scheduled. The counselor went home sick one day and it has taken me a month to get a return call to schedule a new appt for today. They never even called me to tell me he was out sick that day just when I showed up they told me I was a lil irritated.

After nicks insurance kicked back in I had Comm mental health authority (cmha) evaluate my son. He met their crietria for DD (developmentally disabled) Services and we will get respite (babysittting for nick while I get a break and they pay for it YAH), conseling, psych, summer camps and so many more things. But since his therapy was already in place where we were and I didn't see the need to uproot him again I declined those sevrvices but knew at any time I could change that and there would be a wait list on the psychiatrist though.

During our appts the new counselor brought my attention to the need of neurological testing for nick but he had to find out who did the referal to the neruologist our counselor thought was the best to do so. We needed to find out exactly where on the autisim spectrum he was but more importantly testing of the brain to see where the neurotransmissions were lacking. It would consist of eeg's maybe cat skans etc. After numerous attmepts to get this referall from our insurance and actually approaching the psychiatrist myself I took matters into my own hands a week ago. I called my sons legal advocate extremely irriated and fed up she advised me to go ahead call the neurologist schedule an appointment and inform them of it and put a push for the referall.

SO I called the neurologist that the counselor was referring to. THEY DO NOT TAKE OUR INSUARANCE and to make matters worse they do quesiton and answer testing no EEG's not what we needed and even more worse the psychiatrist that we see at this center WORKS THERE and KNOWS they don't take our insurance so why in the same blazing hell would they even waste time with this STRIKE TWO!!!!!!!!!

So now I am literally foaming at the mouth screaming at his advocate in apsolute flustration. I am so lucky to have her that is what she is there for she listenst to my bitch session and then helps me with the next step we work great together. But today I was fed up and she totally understood. I hung up with her and began phone call upon phone call I went online searching for pediatric neurologists in our area. Hurley popped up. Nicks gastronologist is there and I really like it there. So I called one office but they were for adults they gave me the number to patient services. They gave me two numbers. I called the first one but they required a referal from the family (not psych) doctor and it be six months before they had an appt. That won't work! I called the second place NO referal needed and we see them Jan 28th FINALLY we are getting somewhere.

In my phone talk with his so called counselor monday I informed him of this new appt. Today was a hell day nick had school till 10:50 I had parent teacher confrences at 12:20 his conselor at 3:00 and his psychiatrist at 4:10. His orgianl psych appt was at 5:20 but since we were there they would just work us in right after his counselor was done.
I had spent the day at my grams cause she was watching the kids and I don't take madison to his mental health appts that is our time to work together. So I arrive to the counselor appt and they inform me YET again he left early sick further more the psychiatrist was not even IN until 4:30 so the whole four o clock thing was bullshit anyhow. STRIKE DAMN THREE!
Well that was it, with the mishandling this summer, the neurology, no contact and now this I was done with this place. Nick was crying he can't handle this crap all the changes is just to much on him.

So I got in the car called his family doctor I informed the nurse I was done there and that CMHA could start counseling immediately but the psychiatrist was a wait list and that is who handles his meds. I wanted to know if the family doc would cover it until then. She brought us right into the office I stopped home grabbed all of nicks papers IEP's etc etc and current pill bottles. On my way there I called his advocate who is like ready to strangle this place informed her what was going on and what I was doing and also called his counselor at the school to see if she thought this was a good step she said it was and also gave me a few names of other places to handle his mental health if this don't work out.

I Went over to the appointment the doctor TOTALLY unerstood my flustration and was furious himself with them. This doc treats his kids like his own. When he gives them their immunization shots or any shots he hugs them after and during he tell them I love you I mean he is the sweetest damn thing. He talked with us for an hour and really feels that CMHA is the best place for nick because of his age. He also said we were on a good track with the neurlogoist and assured me I was doing the right thing. He filled his perscriptions plus gave us two refills to cover us and will see him back in a few weeks just to monitor him His family doctor doesn't really deal with this stuff but he refers out to good places so he is always so much I help I really REALLY like this doctor.

It was like a huge weight was lifted off my shoulder at that moment. I didn't have to deal with this place anymore. I contacted the center told them I was done sending my son there. The lady I deal with there said she seen it coming and was really sad to see us go. She also said that his counselor will get his file to close it and to expect him to contact us to try to talk us out of it UGH TO LATE. PLUS she is sending our file to the head of the center to bring attention to this crap. She wished us good luck and told me his file will be there for 7 years if I ever need it. Now I just need to contact the guy we deal with at CMHA tomorrrow to get him in to a counselor asap and get us on the wait list for the psych doctor.

When I got home I had a very sweet message from his advocate and I called her and told her what the family doc was doing. She was so happy for us and assured me that I am not the only one dealing with this and just to relax and know that atleast at CMHA she can attest that he is in good hands.

Here is my thing on all of this. These places these so called FAMILY SERVICES are suppose to be a support system FOR US! They are suppose to be helping me and guiding me on how to help my son. Not making matters worse for me and stressing me all to hell. I am doing all the damn work and they are getting the paycheck! It is a shame that a mother who doesn't know crap about any of this can get more done in two days than these nimrods with medical degrees!
I am just so fed up with inadequate people caring for my son and I will not tolerate it any longer. Time is of the essence with him a day missed is a three day down fall for him. Nick was out of it today he doesn't handle this crap and I am tryin to keep my cool not to uspet him but I know he sensed the flustration in me. If anything I want him to see I ain't puttin up with this shit. I hope he seen that today Even the nurse noticed his eyes were showing stress signs at the docs office and did a blood pressure on him to make sure he was alright.

Once I got home and calmed down I took nick aside and explained things with him. And spent a little extra time with him tonight. The good side is he was not attached to this new counselor, his old one he had for a year and a half so that was hard on him. I told him where we were gonna go he really likes the guy from CMHA and there are more programs there like tuturoing and mentoring programs just to name a couple. I told him it was a good step ahead and we need to do this so he can keep doing better in school.

This was the first postitive parent teacher confrence I have had in years. The staff working with him now is his best team yet and they really recognize his strengths. One big change is we are gonna stop focusing on what he can't do and more on what he can or could be doing instead. Nick will defeat himself before he tries becaues he fails so much. But they see that when he realizes how much he really CAN do the pride he holds is amazing! He will now get one on one with his math with the resource teacher. He will participate in more regular classroom learning but not be requried to be called upon and will be reassured of this and it will be up to him to raise his hand to participate. The staff really is working hard with him and it is so nice to see and I do believe alot of it has to do with the fact that they are seeing more of me in there and me pushing and doing more now then ever. I think it makes a huge difference. I don't really fight with them I basically tell them what I expect and do it or else! LOL so far it works.

Well that's what happened I know it's hard for my friends who don't have a kid with needslike this to even comprehend what I go thru DAILY I will say count you're blessings for what you got. I wish nick had the lifestyle their kids do but at this point the best thing I can do is keep him active as his family doctor said things like soccer will keep him motivated give him goals and things to look foward to. So for now I try to give him as "normal" of a life like other kids he can and just hope it all falls in place real soon thanks for listening to my rantings -rach

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