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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

Sunday, September 13, 2009

Update on both of my chilren...

Well another school year has begun and I have two children in school this year. A lot of big changes for bot the kids I will go over them both....



NICK....

Nick is progressing this summer better than in previous years. One monumental change was a change in his mental health. I have found a new therapist who in turn sent me to a new psychiatrist. These two people have literally changed Nicholas around. He is on new medication as the old ones just were not working for him. Trileptal a mood stablizer and Periactin to help him sleep at night. Nick is more socialable, he is able to recognize his needs and fill his own needs easier as opposed to relying on others to do them for him. He is more helpful and when asked to so something instead of groaning, wining or temper tantrums he say's "okay" or "sure" and then does the task he is asked to do. He was very excited for school. He has gotten taller this year and seemed to like all the teachers and students knowing all his changes. He is very concious of his looks. He has changed clothing styles we went from skater look and south pole and mark echo to now wearing levis and a nice shirt and a pair of vans. He likes the trucker shirts that Ashton Kutcher wears and he bought one for schol. His appearance has become something he realizes he has control on. He love the axe body sprays and deoderants. As far as developmetal changes his fine motor skills are still lacking. For instance tying shoe laces even though he is eleven is still a challenge he does get it done but slower. His maturity has increased this summer. I am hoping for a great school year this year.

MADISON...

Madison went to head start last year and they found auditory reception and speech delays in her. They have now put her in two programs. She attends a Early Childhood Developmental Delayed (ECDD) in the morning at nicks school and then head start in the afternoon. Her normal week will be Monday - Thursday 7:30-4 and Fridays from 7:30-10:55. She rides the bus in the morning and then in the afternoon and really likes that.
The teachers just love Madison she has warmed them right up. They have one aide directly working with her in the room. She outages most children in there by a year and half and is the only one with prior classroom experience. She is kind of a teachers helper and role model at circle time. She has a tendency to want to be the mother of the room always consoling the crying kids.
One new goal for her set this week is word sounds. Any word with an F for the first later has a "sh" sound for her. So fish sounds like sish. Or fork would sound like shork. Maddy has kind of started her own language and way of talking. Those around her can start to understand her more. Those in conversation with her and in subject can understand her words. But if she was to approach you and talk you would not know what she is saying.
It is unclear the severity of her condition. We see the doctor this month and will begin neurological testing on her since her birth was so high risk. We are also looking for any type of of palsy that may of effected her speech since she lost so much oxygen time when she was stuck being born.
I know that Madison is in the right programs. The first day of school was very hard for her she had severe anxiety problems. She has four melt downs and two sick to her stomach episodes. She finally did finish the day. I have noticed Madison is very emotional and sensitive lately and I am not sure if it is her age, life circumstances or more. She has a great team working with her and I am positive we will handle any obstacle in our way accordingly.


I will keep posting updates as I have them and as always thanks for reading my blog and sharing our story!

Friday, September 4, 2009

A much needed update on nicholas

Well as you can tell I have been MIA lately. Main reason being their was not much to report for nicholas as his progress reversed. But I am glad to announce he is progressing very well. This summer has been a tremendous turn around in our lives. I have a new therapist for him that nick actually looks forward to seeing. In combination with the counselor comes a new psychiatrist and let me first say he is amazing. He specializes in the autism field. He has nicholas on mood stableizer medication. The change in nick is dramatic. The mood swings are gone. He is still a little anxious but that is calming down as well. The new diagnosis is autism still. But they have also added chronic post traumatic stress disorder in direct result of our house fire. They are using he counseling sessions to attack that issue directly. School starts in a few days so we will be better able to judge nicks scholastic progress after that. In all I am optimistic. Less stressed and in all a happy mommy again. I will be posting lots of new pics in the days and weeks to come. As always thanks for taking the time to read my blog and share in our journey!

Friday, January 9, 2009

And so we wait....

It will be next week till pathology will look at the intestinal tissue biopsy slides so i won't know if he needs surgery till then update more later.

Ann Arbor here we come

Today we go to ann arbor to the Univeristy Of Michigan Children's Hospital to see a specialist for nicks intestinal problems. This is the last resort for us In michigan other wise we will have to go out of state and that is not going to be good.
So please say a prayer for us today I am worried and just plain freaking out I will post more info when I have it thanks!

Sunday, January 4, 2009

Paper, plastic or cloth? Let's do a challenge!

For years we are use to being asked paper or plastic at the check out line. Then walmart made their super centers where plastic bags are automatically on their lil twirl devices for check out so their went that option of brown bagging it. To be honest I love brown grocery sacks but the plastic handle ones always were so much more convient.

When the craze began I started buying the recycle cloth bags about a year ago. I must say I prefer them over plastic grocery bags. Their more substantal they don't tear like the store plastic bags. Plus you can disguise you're purchases from nosey kids who break into the snack packs.

Don't let their shape fool you they can hold ALOT of food! Their especially great for larger jugs of sodas, juices and can goods that always split store grocery bags. Their are also rumors of stores offering small discounts if you bring you're own bags. I mean lets be honest can you imagine the cost of those cheap plastic bags anyhow?

I have a wonderful collection of bags from walmart, target, meijers, staples, office max and even macy's and pier 1 imports. It's kind of like the crem dela crem of what bags you're carrying. And at only a dollar their not that expensive. Some stores even offer a buy so many get one free offer.

I use my bags all the time for non grocery items, as a matter of fact my son used one for a sleep over saturday night to carry his p.j.'s, underwear, toliteries and change of clothes and everything fit perfect! Their light weight and easy to carry. I also purchased a few of the freezer bags from walmart so now I won't have the wilted boxes of frozen foods that melt and ice cream getting soggy. Even you're milk is ice cold when you get it home.

So I challenge you all to take the cloth bag challenge. Buy five and take them on you're next small shopping trip to pick up a few grocery items and if you are not convinced you're only out five bucks.

If you know of any store chains or local stores in you're area already giving disciounts for use of these bags or offering dicsounts on the purchase of them and free ones please post them.

Let's give this a shot! Who's in?!

I can almost bet you will love them!

Friday, January 2, 2009

To gift or not to gift?

I am honestly trying to figure this one out. Since the school year began my son has had three birthday parties to attend. He has went to each and odviously buying a gift for the kid. Their has been on he was sick for but I sent the kid a gift card for walmart in a card.

So before the holiday break I gave only a few kids their birthday invites to my sons birthday party and the rest will go out sometime next week. I have received three confirms and two no's one of those being a child who's party nick attended.

Something like this happened last year and what blew my mind was that their were kids who's birthdays we went to that did not come and not even so much as a birthday card!

I am sorry but is it me or is that just RUDE! I mean for us it is if I can't send my son and you took the time to invite him I will send a small gift if you are a class mate and for best friends of his their getting hooked up regardless.

So why as parents don't we do this? Does anyone else send a gift if their kid can't make it or a card especially if the childs party is one who attended a kid of you're own. Just wondering if I am alone in this thought or not thanks!

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 system...one 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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