First day of school nerves…not his mine!

Ok the first day of school is a matter of 5 days away and seriously the nerves, stress and anxiety is starting to hit me full on.  I am so worried and scared for my sweet innocent son, he has no clue about the shark tank that he is about to enter into.  My sweet kind-hearted son who still plays with legos and believes in the tooth fairy and Santa Claus, he is going to be with kids that are starting to go through puberty and have the beginning of raging hormones.  How will he adapt and find his niche in this world of preteens that are sharp-tongued, cruel and heartless?

How will this change his world?  Will it shatter it like a fragile bubble and cause him to withdraw from us or does he possess an inner strength stronger than even mine that will help him adjust and find a little world within that holds friends that he can smile and laugh with?  I know that I cannot shelter him or protect him from what the world holds for him, but I am praying with all my heart that there is a guardian angel watching over him and protecting him, giving him courage when he is faced with something so cruel it almost crushes him.  Whether this angel be a fellow student, a caring teacher’s aide, or a literal angel, please be with him when I cannot.

As I write this and think of what may happen on Monday and the days that follow in this school year in new territory, I wipe tears away and hold back sobs.  I just want to hold my son and protect him from this world filled with ignorance and lack of understanding and tolerance for anyone or anything that is different from the “norm”.  I know that this is out of my control and I have to let him spread his wings, but this is one moment that I don’t want to let him go.

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Transition Meeting ~ elementary to middle school

Sorry it has been forever since I posted here and I feel horrible. I really want to be more devoted to this blog and to sharing our journey with autism. 

 The first thing I want to share with you all is how our “transition” meeting went with the school.  If you don’t know, Jacob will be in 6th grade next year and that means he is starting middle school.  It is an understatement to say that I had massive anxiety attacks when I thought of throwing my precious innocent boy into a pool with sharks (aka middle school).  With Jacob’s sensory sensitivity to loud noise and harsh touch I could literally visualize him curled up in a corner in full meltdown.  Then there was the fear of how much worse the bullying would be.  How could I possibly force my son with the heart of gold and the innocence of a 5 or 6 year old into a situation with kids that at times are cold and heartless making their cruel comments and taunting and teasing for anything that seems un-cool or different. 

 Meeting day came back at the middle of May, my nerves were trashed and I was fully prepared for the battle.  Jacob’s presence at this meeting was requested, adding more tension to my already raw nerves.  However, the new Special Education teacher was absolutely wonderful right from the start.  She answered all of our questions, listened to our concerns and made note of them, she also calmed my fears regarding the classroom changes and bullying.  Unlike his elementary school and their complete denial of any bullying issues, this school has a zero tolerance for bullying and takes it very seriously.  I was very very relieved.  It actually seems like Jacob will be getting more assistance and help in middle school than he ever did in his elementary school.  

 Time will tell, as the first day of school is approaching very fast and only then will we truly know how Jacob is “transitioning” into his new school.

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IEP ~ Battle with the school!

Jacob has been on an IEP since he was in second grade, however, this IEP was for his ADHD. The school district’s testing was never broad or complete to have caught every aspect that was truly needed for Jacob. Once we received the diagnosis of PDD-NOS for Jacob I sent my fingers flying and drafted an email to the school, not just his teacher or resource specialist but the principal as well as the Director of Special Education for the school district. In my dealings with this school and this district, I knew I had to list everyone that had a part in making sure that my son received what he is entitled to. Of course, this has made me a tad bit of a target, especially for the principal whom I feel slacks off on his job and is in complete denial of the issues in his own schoolyard.

Once we received the actual written report from the doctors stating his complete diagnosis and recommendations, I scanned it and emailed it to the school requesting an IEP meeting. WOW this meeting was like no other meeting I had previously experienced. I went in there requested that a broad and full retesting be done on Jacob and with a well thought out and written request for accommodations and goals to be included in his future IEP. This also included a special goal to teach Jacob how to deal with and report being bullied. Obviously, without intention I had fired the first shot in the battle with the principal and district, this was a topic they DID NOT want to deal with.

On each one of my accommodations I was informed that they would be allowed or are that they were already in place. Minor victory for Jacob!!! I, however, continued my fight and approached my greatest concerns thereby being my greatest battle and faceoff with the principal; I began stating the goals that I would like to incorporate into the IEP.

Goal #1: Get Jacob to be self-reliant and report bullying to school immediately (specify who to go to directly to report). Teach Jacob to use form letters to report bullying. –To me this was not too much to ask.–
Principal states: Jacob is not “bullied” and that he is not “targeted”, he stated that due to Jacob’s lack of understanding of social cues he irritates other students when they do not want to play with him and that those students get frustrated and respond back. Therefore, stating that it is Jacob’s behavioral issue that causes his treatment by other students, another words stating that it was Jacob’s own fault if he gets picked on. The principal did not approve of the form letter that was drafted and did not think it was a good idea.

Goal #2: Establish Jacob’s accurate reading level and comprehension level ~ teach at that level. I felt that their tests were not accurate enough to determine if Jacob could read an entire book to be able to do a book report (which they require). When I asked if the testing would determine an actual accurate level of Jacob’s reading, comprehension and ability to retain what he reads.
Principal states: Their tests were accurate and that it may be Jacob that is lazy and chooses not to pick up a book and read it.

Goal #3: Form a structured environment for Jacob during recess and lunch based on Jacob’s social developmental level (not isolation in the library or computer lab as it has been).
Principal: Stated that Jacob has the option of going to the computer lab, library or even staying in the cafeteria that he is not forced not to go on the playground and that he can choose whether he wants to or not. Principal Wilce stated that Jacob is not being forced to go to any of those places and it is by Jacob’s choice (bullied or hide….what do you think Jacob chooses?)

By the end of the meeting, I was in tears. Here I was trying to fight for my son’s right to an education and I felt beaten down and alone. I did not feel like an advocate for my son, I felt helpless and bullied just like he did on the playground. I had to be more prepared and stronger for the next meeting which would go over the results of the testing I had requested and determine the actual IEP. I had to gain my strength and prepare again for battle. My first plan, respond back to the district and everyone that was at the meeting what I felt were the responses I had received from them to my requests. So I typed it all out and sent it in via email and hard copy. (ALWAYS remember to send hard copy by regular mail also, that way it gets into your child’s school records.)

April 6th was to be the next date of battle!

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The Diagnosis~our journeys beginning

There are so many thoughts and feelings that flooded my head on the 11th of November last year: relief, guilt, confusion, heartbreak, disbelief, regret, anger…I am quite sure that the list can go on and on.

At age 11, Jacob just wasn’t fitting in with other boys or girls his age, he wasn’t as mature and he still threw temper tantrums and couldn’t be left unsupervised. As a mother I wasn’t quite sure if this was the ADHD that he had been diagnosed with in first grade, or if he was just out of control. Never did I really think that he was autistic, the thought never crossed my mind. Over the years I had done tons of research on ADHD, its treatments, medications, therapy, IEP’s; I’m sure you get the point. I am a very analytical person and I research EVERYTHING that applies to my life or those I love, however this slipped past me. I don’t even know how it could have, it was a HUGE elephant in the room and I just didn’t see it.

Jacob was being seen by his pediatrician and a specialist that handled only his ADHD and medications. We had been through just about all of the meds and the only thing that half-way worked for Jake was Ritalin. But as I said, it only worked half-way, he was still very distractible, extremely impulsive and the temper tantrums (now I know they were meltdowns) were out of control. My fiancé, John was one of the first to point out to me that there was more going on than just ADHD. He has become the father that Jacob has NEVER had and loves him as his own, for him to say this was very hard. So we made an appointment with his ADHD specialist and asked him if there could be something more going on than just the ADHD; that one question changed our lives forever. He spoke to Jacob briefly and turned to us and stated he was referring us to the ASD clinic for testing.

November 11th became the day our lives changed forever, I know that seems a bit melodramatic, however it is very true. After 8 hours of testing and talking to both Jacob as well as us, we were told that Jacob has PDD-NOS. To me it was random letters that really didn’t mean too much to me, so I asked them to please clarify “what does that mean to my son?” That was the first time I was told that my son was on the autism spectrum, not Asperger’s, as I had thought, but lower functioning in his daily functions. The extremely hard news we were told was that his average maturity was that of a 5 year old and some of his comprehension was that of a 2-3 year old. My heart broke and the what-if’s started flooding my mind, I was overwhelmed instantly and wasn’t sure how to surface underneath the flood of emotions and thoughts. I couldn’t seem to even breath much less think of what this was really going to mean for us. I knew really nothing about autism and what it entailed and what it meant for my son. I just didn’t know what to do, where to go, who to talk to, there was no one in my life that I could turn to for answers. Heartbreak doesn’t quite grasp the feeling I felt in my heart, I was plagued by guilt, that somehow it was my fault because of the stress I was under during my pregnancy, that I never caught this earlier and had him diagnosed… However, the questions that were also somewhat answered gave me some type of relief, I now knew why Jacob behaved the way he did and it has explained a lot.

Now 6 months later, I still struggle with all the same feelings, but we are taking the steps to help Jacob and our family. I am quite fortunate to have excellent benefits that cover his treatment, unlike so many other families in this country. Jacob sees a therapist ever 2 weeks who is absolutely wonderful and since it is therapy not just for him but us as a family it has started to help so much. I have been, of course, doing quite a bit of research on autism; however as we all know no one on the spectrum is alike. I have learned a lot through another blog Diary of a Mom , which has let me know I am not alone. Although, I have miraculously found a method to help Jacob calm down from his meltdowns that works and have started to pinpoint the triggers.

Fortunately, Jacob is not withdrawn and he is very compassionate and loving. In the words of my daughter Ashley (age 18), “it isn’t Jacob that needs to change Mom, it is US, we all need to change how we treat him. Not to mention in all of this, HE is going to teach us so much.” Everyone keeps telling me in my weak moments that he is still our Jacob and nothing has changed that, we still love him and he loves us unconditionally. So this begins our journey.

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My Very Special Jacob

In November of 2010 my 11 year old son Jacob was diagnosed with PDD-NOS, he is lower functioning that Asperger’s level in his daily activities with a maturity of about 5 yrs old and the comprehension of about a 2-3 yr old. In 1st grade he was diagnosed with ADHD, but as he grew older we suspected that there was something more going on, he just wasn’t maturing as others his age. Jacob is my little bubba, he has always been my baby and he loves to cuddle and get loves and just be snuggled up with Momma on the couch. He is my heart and soul.

The diagnosis of my son being ASD was an absolute and overwhelming blow to me. I am still trying to accept his diagnosis and educate and learn all that I can about ASD and what it means to my son. For most of his life I was his only parent, now my fiance John is in our lives and has not only assumed the role of his father, but loves him as if he were his own son. My daughter Ashley, who is 18 with her own emotional issues, was in complete denial at first but is sincerely trying to understand, learn and accept the changes we must make for her brother. This is an adjustment in our family that is difficult, for years we thought that Jacob was just being defiant and out of control because of his ADHD, not realizing that there were all the other issues that he was trying to deal with in his own way. Yet we all are trying and we are all support each other as well as Jacob.

Jacob has struggled is school so much through the years with no medications helping fully and just being passed through the education system. He lacks the skills to do the basics of a 5th grader, he cannot read a book completely and retain or comprehend it, he has no clue how to write a report much less a paragraph longer than 3 sentences, they have just failed my son. Next year he is being forced to move to a middle school that I feel he is so unprepared for. I cannot imagine my son with the maturity of a 5 year old, sensory sensitivity to noise and touch, navigating the school with the other children that are like sharks waiting for the weak. I am terrified for my son!

At the moment I am in a battle with his school and the district to get him on the correct IEP so that he is getting the full educational benefits and resources that he has the legal right to. I believe that my son needs more 1 on 1 assistance and that he needs more supervision and protection, the school wants to give him the least of anything they legally have to.

So as of now that is where I am in this battle with the world and the schools to accept and help my very special Jacob.

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