The First Day as a 6th Grader - September 2009

The first day started out rocky. Poor Jacob was nervous about an incident that happened the previous day on the Internet. One of his favorite past times is on-line gaming so we discuss computer manners that he should have, possible kooks, and how to protect himself. The day before to school he was playing his favorite on-line game, and another player kept asking for Jake's real name and where he went to school. This person was persistent and Jacob became real nervous. Right after this incident he told me what had happened. Of coarse I reviewed their conversation on the computer, then praised Jacob for his good reaction to it all (not giving out any personal information and blocking him on the game). It could have been just an annoying child, or a weirdo. Anyhow, this stuck with Jacob throughout the rest of the day, it ran through his mind constantly. It evolved and escalated in his head and he came to the conclusion that a bad guy was stalking him and wanted to take him. Despite my reassurances that he was safe, Jake was still very nervous and insisted that someone was watching him, & didn't want to school because that person was going to take him out of the school and I would never see him again. As a mom, it just rips my heart out because I try the best I can to comfort my little guy, but feel that it only helps a small amount. I know that he was not playing tricks on me to avoid going to school in the morning, his behavior was genuine. He was truly paranoid.

It was a rough night, and the next morning arrived. I convinced Jacob he needed to go to school, and that he would be safe. Upon greeting his wonderful teacher that was not seen all summer he explained to her nervously that he "met an online predator". I told to her what had happened so she was aware of what was going through Jacobs mind, and would be able to deal with that issue if it came up. The halls were buzzing with kids, and quickly Jake became involved talking with one of his friends. So I wished him a happy day and went on my way.

During the 3 1/2 hours he was at school, I did not receive a phone call from them, WHEW!!! Upon getting in the car he had a big smile on his face, and he said he had a great day!

Preparing for This School Year - August 2009

In preparation of school, we are not talking about it too far in advance. Last year was quite different, only because he was switching to a whole new building, but since he is returning to the same one as last year, I chose to withhold the S word until now, one full week before school begins.

Depending on the circumstances of how to handle the upcoming school year, I think its different for each child. Withholding the S word ensures Jacob of having no anxiety about school yet. All he needs is to hear a word, and it manifests setting off panic and non-stop attacks. Its not the typical anxiety everyone feels before a new year begins, it is magnified and repetitive for Jake. Besides himself, he would be driving everyone else in the household crazy!! I know my son very well, and he would be loosing sleep thinking about the upcoming school year. It would give him reason to dwell on negative thoughts concerning teachers and peers, also bringing up past experiences and events, so I am not giving him this reason. He is unable to put things into perspective and think logically about them. Besides, he is having such a wonderful summer, I hate to spoil it.

Being a typical Aspie, Jacob has a very hard time with transitions. The year before last was a complete disaster when he began a new school, (I moved him to a very small Lutheran school to public school), and it was just awful for him. Jake got lost in the halls, panicked over the bus, the class size doubled which overwhelmed him, there were several incidents with teachers and students, etc. etc. The year was full of crying and meltdowns literally every day. I know he did not learn a darn thing that year due to his mental state. It was awful to say the least. I blame no one but myself for this. I thought I did a good job preparing him for the changes, and assumed the school staff knew better. I failed at being Jacobs advocate; to explain who he was and obtaining what he needs at the school.

I learned from that experience, followed my instincts, and really focused on the transition process the before the beginning of last year. Jake switched schools again, but to move was with the rest of his peers to the 5- 6 grade school. The whole staff at the new school probably thought I was nuts. But the change went quite a bit smoother than the previous year. We must of visited the school a dozen times over the summer. Jacob would just wonder the halls to see where they lead to, he basically memorized the school layout, and visited any open rooms. Jake made contact with a resource room teacher several times, the principal. school secretaries, and ESAP. I explained thoroughly Jacobs mannerisms, his fears, his issues to everyone that would listen. I gave Jake's new main teacher a copy of my blog too!! I thought this was extremely helpful to him since he did not know what aspergers was. I don't think I could do any thing more to prepare him.

This year since Jake will be returning to the same school, the only thing different will be his main teacher, and of coarse the location of his class. Thank God his extraordinary resource room teacher, Mrs. H, will remain the same! This gives Jacob, (and I ), a huge comfort as far as this year goes. In my previous posts I have bragged about her, what an amazing person and gentle teacher she is. I know she will be a advocate for Jacob at school, which takes a lot pressure off. So, all that's left is contact with Jacobs new teacher, and I will try and fill her in as best as I can before school begins sometime this week. I am praying this new teacher will be open-minded, flexible, have a few tricks up her sleeve, and a sense of humor. Am I asking for too much??

I don't understand why special ed students don't get a meeting with their teacher before school starts. I realize it must be very difficult at the beginning of the school year when all teachers are setting up the classroom and getting everything ready. I think it would be very beneficial to the special ed students as well as the teacher to spend some time with those new students. Perhaps having an hour playing games with them, and another hour explaining her classroom rules. This would help those new students to get to know the new atmosphere and mix with the new teacher a bit. It would give the new teacher some perspective on her new students and a head start for the students. I think that would be a wonderful way to transition for Jacob! I'm asking myself why isn't this being done?

I have just now started to clean Jake's closet and drawers in his bedroom out, getting rid of the clothes that don't fit and deciding what he needs to begin school. During this process I have started to talk to Jacob about the beginning of school in a matter of fact way. His response was positive, inquired about Mrs. H, and how the summer has just flown by. I have shopped alone and bought some school supplies, without Jacob going with me and tucked them away. I think next week I will take them out and show them.

HIS MOUTH GETTING HIM IN TROUBLE

SWEARING

We (Ken and I) don't talk like sailors, why does Jacob think he can spew out such words? Now and then one slips out of our lips, but we really watch our language. To me, I have a huge problem with others swearing around me. Also I taught my kids that saying "God" is forbidden, unless it is in a positive way, praying, etc. Not to use Gods name in vein-however he continues to say "oh my God!!" when he is frustrated or even excited. Unhappily, Jake has remarked to me "screw you mom!", (it took all I had not to slap him silly), and says other colorful words that should not be said by children. Punishments have been handed down, however Jake continues with the bad words. A lot of the words he doesn't even understand, he just repeats them.

On the other side of the fence, when Jacob hears swearing, it clearly upsets him. He is distraught about it, and then has a hard time letting it go (talking about it repeatedly). He seems to catch every bad word from every direction too. Most of the time it was not directed at him, he's just a bystander or from TV show. "Mom, I just heard this person saying ____ and _____". It definitely effects him as he knows those words are wrong and objects to it.

My question is, why does HE use the bad language???? That puzzles me.



My anxiety - SOCIAL SITUATIONS

As time goes on and Jacob gets older , I'm afraid for him. He does not control the volume or tone of his voice and speaks louder than average. The other day 2 boys (probably 13 or so), were shirtless riding their bikes, one with a backwards baseball hat on and boxers hanging out of the waist band, were riding swiftly past us. "Oh- my- God, they look so cool.......(laughing). The boys looked back and I quickly shushed Jake's continuing words about the boys. After awhile Jacob continued with the remarks how they look "gangster, and so retarded..." loudly. I tried to explain to Jacob the reasons to why those remarks are not a good idea, but he just doesn't seem to understand what I was trying to tell him. He continued giggling and I could tell I was talking to a brick wall at this point. The other kids definitely heard his remarks, and I am so grateful they brushed it off. I could see the situation easily escalating. This is just one example of this type of behavior of his that has gotten worse. I am thinking it has come out more this summer because he is maturing and the whole puberty thing. He must be experimenting with words, etc.. Afterwards when we were at home, I tried to discuss with Jacob what had transpired. I gave an example and asked Jacob what would happen if the other kids were saying things about him, how would that make him feel and what might happen. But our conversation did not last too long before he was distracted onto something else, and I could not get through to him what I wanted him to hear. One learning opportunity gone.



How to get through to an asperger kid that words could cause serious and even a grave outcome for him? Learning lessons is tough for anyone, how long is it going to take for this one to sink in? And should I be blaming this one on the aspergers too (with the brain connections...)? Or is he just being hard headed and difficult (like my ex-husband, his dad-that's a whole other blog!)? I dread to think of him getting seriously injured or worse, because he did not hold back his words, pushing someones buttons and the situation turn physical. It certainly more socially unacceptable as he is getting older. If little kids say something rude or offensive, it is quickly dismissed, but what will happen when he gets to high school? Out on the school playground this year? Or riding his scooter around the block alone? Impossible however, I would wrap him up in a plastic SOUND PROOF bubble if I could to keep him out of trouble! Or how about a huge sign hanging from his neck saying : "I have Autism-Forgive me for what I say or what I do". Oh how I fear for him!! Do I have to keep him by my side forever or will he grow and mature enough to live out on his own in the world? I do worry about that even though he is only 11 years old now.



SCHOOL SITUATIONS, a huge area of concern for me. On the surface he is eager to play and wants to get involved with other kids. He is outgoing and does not have an ounce of shyness in him. How wonderful, right? Not to be shy as I was as a child. However, just after a short time with others, the honeymoon is over. No wonder why he has such trouble with others. Upon Jake's loud "opinions", his peers retaliate, then Jacob gets upset and a meltdown occurs, or the situation has manifested in his brain and caused him serious anxiety, including loss of sleep, or inability to function at school, etc.. He does not recognize what he had sad to make the others upset at him. He has lost respect of friends & classmates in the past for this. Jake wonders why. "Why don't they like me ma?" " Why does everyone hate me?" " Why do they pick on me? " Over and over and over, its a repetitive cycle. He just doesn't get it! He doesn't remember saying anything to the others. All he remembers is the consequences of the other children of name calling, or the other kid mad at him , etc. Will he ever get the whole picture? I do not believe he has an arrogant attitude, as I do not. I think I am a very humble person and reflect that around my children so I know he is not picking it up from me. I do believe there is some brain malfunction. However, not everyone knows and understands this. Again, that sign would sure be helpful!!



I will continue getting Jacob into social skills classes, hoping some of this will sink in. So far, he has gone through a few classes, but hasn't gotten anything out of them. Before this school year starts I will also talk to Jake's new teacher, and try to explain to the best of my ability my concerns. He will be going into a large school which they call Upper Elementary with 5th and 6th graders, of which he attended last year. I'm praying for a calm year!







WHAT TO DO?

What is the answer here? He is mainstreamed in school, but spends quite a bit of time, (at least 1/2 a day or more), getting academic help in a resource room. Which leads me to another huge question for me. Would it better for him to get him in another sort of classroom, where he is just around others with disabilities, or others just with Autism like an EI or AI room? Or perhaps a whole other school for Autistic kids like Burger in the area, so that others around him understand this and maybe handle him better, and in turn he would do better in school? Would the episodes not happen as frequently as they do now being in a large public school? Would home schooling be the best answer? We have already tried a private school with small class size but that did not work because of the closed-minded teachings leaving Jacob in an almost suicidal state I believe. His emotional evenness hinges on his academic day. If he is out of sorts and something bothering him, he is no good to the teachers and to accomplish anything. because of his inability to let things go. As small as a cut on his knee, a teacher that scolded him, or a student making a remark that wasn't even pertaining to him directly effects his whole day or can even turn into weeks of anxiety and nothing being accomplished at school.

July 2009

This whole summer Jake has not had one sleepless night! Its amazing! Ever since school let out, Jake has been getting 12 plus hours a night of solid, glorious sleep, and so have I! Both of us are getting our beauty sleep.


TUMMY PROBLEMS - GETTING THE SCOOP ON THE POOP
I have taken Jake to a new pediatrician, one that a friend recommended that is Autism friendly. I figure now is the time to get to the bottom of his belly problems. Since no therapy appointments or classes, before we start the braces, and its summer time. I have tried to figure this out on my own, playing poop detective, however I need some help on this one. I've tried to monitor everything he eats, along with amounts and times and nothing seems to connect. Getting Jake to talk about poop usually isn't very hard, however talking about his own poop (how often and consistency is like sawing off a leg), he just won't do it no matter what I seem to try. Last year I thought he was lactose intolerant, so I cut out the regular milk and bought lactose free. Also gave him lactose tablets when consuming ice cream. However, I think it is more complex. The pediatrician has referred me to a pediatric GI doc, which we have an appointment with in September.



Why is it so many Aspie kids have belly issues? I just don't get the connection to brain and belly function. I've read so many things, and its hard to sort out what to believe everything I read. Many parents put the kids on restrictive diets such as gluten free/casein free and swear by the results (including behavior wise). Some believe there is absolutely no connection between the stomach and Autism problems.


I GOTTA GET TO THE BOTTOM OF THESE GI PROBLEMS!
I am on a mission to find answers for Jacob on this one. Allergies, leaky gut, a blockage, or just IBS..... For Jake it causes a lot of pain and has gone on for years! The reason why I have not dug into this earlier was because the symptoms are on and off, and different at times. Also we have been trying to work on so many other issues, and getting a grip on them. You ask what are his symptoms? Doubtful that he will read this, I will list them, as he is so embarrassed to talk about it! He has everything from painful constipation to diarrhea, to black tarry stools. Sometimes he will go 3 days without having a bm, other days are just fine. Also gas all the time, tummy aches, and even indigestion, and powerful (no other word that I know of) bms are more symptoms.
I do know that it does not have to do with the medication he is on, Celexa since he has had tummy problems way before that. Also, he has blood work done frequently to check his liver functions, etc.

June Continued

His longest friend of 1 year has dissed Jake. He will no longer take Jake's phone calls, and it finally sunk in. Of coarse Jacob is distraught about it, he gets tears in his eyes and tries to talk about it with me. I'm sure its something that was said, and the kid befriended him. Will this teach a lesson to be nicer and watch the words he says to his friends? I'm not sure. I thought they made the perfect duo since Jacob is so outgoing, and his friend is very shy around others. Maybe they will patch things up sometime in the summer, as this other kid doesn't have many, if any friends other than Jacob.



IEP THOUGHTS

The school IEP went better than I expected. Even though Jake has had them starting in 1st grade for his vision impairment, I was nervous that I was not asking for enough services for him. I really don't know of any more accommodations what the school can do to make it the best school experience for Jacob. What more is available? What else can we take advantage of? Trying to get that information is next to impossible. I was hoping for an ARC representative to attend the IEP with me, however their schedule didn't allow. They did talk with me over the phone to briefly go over some of my rights, and gave me a few ideas. If I would of known of the ARC services before, it would of gave me more time to investigate and ask questions. I believe I was just being too analytical and let my anxiety take over. In addition to the ARC, and through my new found support group, I did get a few more ideas to take long with me.



I looked at Jake's challenges this last school year for him. The emotional side of him popped into my head first. If emotionally he is working on something, then he will not preform academically. And there were lots of days that he did not do anything academically because his emotions were not at rest. There were also many missed hours of school because of sleeping problems (anxiety). I think he grew a lot during the year, arriving at the school nervously, afraid he was going to get lost in the building, and very unsure of himself. He grew in peer situations and friendships also. He learned a lot of the school rules, such as what is appropriate and what is not at school, through lots and lots of hands on experiences.



Academically he is below grade level in each subject. However, with proper supports in each subject, I believe that he could reach grade level with exception of Math. Math concepts seem to be nearly impossible for him, and of coarse his least favorite. His handwriting has improved drastically! Letters have gotten smaller and more controlled looking. Not exactly even or on this lines of the paper, but still much better! One on one is how Jacob learns best, without that support, learning just does not happen. His mind wonders easily. His inability of focus is a constant battle. Behavior wise, he respects authority, and is pretty well behaved.

I'm happy with the plan for Jacob next year. He is listed with 3 disabilities: Autism Spectrum Disorder, Visual Impairment, and Speech and Language Impairment. Following are some of the things included his IEP:

• OT Evaluation and possible OT time (I believe Jake's sensory learning environment is effecting his academics)


• Speech and Language Therapy


• Vision Therapy


• Use of Computer or Alpha Smart for written assignments


• General Education Curriculum in special education

June 2009

The first week of June did not go without a hitch. There was an argument with a classmate. From what I get, the confrontation was verbal name calling. The situation escalated when the child followed Jacob into his classroom , and resulted in Jacob having a meltdown. Jacob called me and wanted to pick him up, and of coarse I told him I could not, that he had to work through it. I'm not sure what the meltdown consisted of, but Jacob said he just couldn't keep it together anymore, and he had a "full meltdown in the class". Both boys were punished as a result of the incident, Jacob had lunch detention for 2 days.

Yet again, Jake is sad because he may of lost one of his only friends. I'm not sure what exactly has happened, but I'm hoping they will patch things up. This kid is extremely shy, and Jake is extremely outgoing so the relationship has worked out very well. We will see on the days to come.

On a lighter note, I met one of Jacobs new friends during the last day of school. I took him to a roller skating field trip, and was pleasantly surprised that he made a new friend from school. Perhaps they can get together over the summer, along with a few of his other new acquaintances from my support group. Good things keep on happening now that I'm with them!! I think its the best that's happened to us in a long time.

May 2009

Can another month be just as stressful?

Myself having depression, dealing with my other (teenage) sons adolescent behavior, along with usual marital issues & trying to be on top of Jacobs problems are causing unmanageable stress. I am wishing for a time- warp, forward to the end of school days. I know then everything will become more manageable then. If I am feeling this way, I can't imagine what Jacob is going through.

I do feel fortunate to of met my new group of moms, I believe its just what I need!

May 1 - Tonight I met a Dr. Mark Bowers. He was the speaker at our support group, and whom I think I will look further into. Dr. Bowers does assessments, councils adolescents and holds social groups for children. Hope to connect with him with Jake this summer if my financials allow. His office does not bill the insurance company, its up to the patient. And just a note, a lot of what he does (therapies) is not covered by our insurance. He seems like he has a good philosophy on Aspergers.

How are folks like me supposed to get the care that our children need to: develop further, grow and flourish when we don't have the financial backbone?? I am already swamped with large co-pays for docs and medications. How can one afford to pay $100 hour out of pocket for therapies???? Several therapy sessions are needed to make any impact. I have basically cleaned out my bank account getting individual therapy for Jacob for 9 months. There has to be some resources out there.

May 5 - I just found out about ARC. An organization that can send a live person with me to our school IEP, and make sure Jake is getting all the help that's entitled to him. Amazing!! I wish I would of found out about this earlier! I'm very frustrated about trying to get information, yet it drives me to find answers! Another resource given by my support group! Thanks Dawn!

Jacobs phone call full of anxiety today. He could not find the book he checked out to return to the school library. He said if he could not find it, he was going to get supervised lunch today. I tried to calm him down the best I could, but he was still crying over the phone. Upon evening he had a headache from all the anxiety, and had a very hard time sleeping. We are still continuing the melatonin, but its not working as well as it has.

May 6 - A phone call from his teacher, and finally handed the phone over to Jacob. He was stressed out with an incident that happened with some peers and he was afraid to go into the classroom. The teacher could not get him to do any work, however he settled down by the afternoon and was able to focus and do much better. Thank you teachers for your patience!!!

May 8 - Another sleepless night-Jake finally fell asleep by morning and slept all the way to 3pm. A whole day off for him, but better at home resting up, than in school uncooperative.

May 15 - The appointment with his pediatrician didn't go as well as I liked. It was to re-evaluate his meds. I pointed out that the anxiety has just been awful and asked if there was a medication he would recommend. Since I have exhausted all different avenues, I would like to try a minimum dose of something to ease his anxiety spells. The doc. did not agree since the school year was ending. HMMM...... Is this right???? I tried to plead my case, but the Dr. had the final say, unfortunately. We are just going to do the best we can without additional meds.

Jacob is still reporting kids picking and threatening him at school, the ones that were picking on him on the bus. He is really upset and thinks the kids are out to hurt him. I am not so sure they won't due to the incidents last year and earlier this year with those same kids. Thank God tomorrow is Saturday!!

May 18 - Upon awaking, Jake said he did not sleep well, however I sent him to school this day. When he returned from school, he reported he had a headache. Poor guy! My heart goes out to him. Hang in there, only a few more weeks left of school buddy!

May 19 - Once again, a headache after school. He also reported some uncontrolled eye rolling. He said his eyes were moving around and he couldn't stop it. He was very sad and upset by it. I tried to ease his mind and comfort him. We crossed out another day closer to summer vacation.

May 21 - Another sleepless night for Jake. I kept him home from school in the morning so he could sleep and get some rest. A visit to the Chiro first before I took him to school in hopes an adjustment would help. He is still under care at least 2 times a week, as long as I can afford it.
We have exhausted all allowed Chiro visits, now I am paying out of pocket each time I go.

Looking forward to a camping trip in our new camper the end of the month-Jake loves the outdoors!

April 2009

April seemed to be a very rocky month for Jake. He was very sensitive and emotional for starters. The school days were difficult for him. A number of issues came up at school resulting in a number of phone calls home. The phone calls I do not mind one bit. They keep us in constant communication, and I think are a huge benefit for all (teacher, Jake, &I). We can sometimes resolve problems by talking Jacob through a situation. I very much appreciated his teacher to use this as a tool, and deal with issues as they come up during the day instead of waiting until who knows when. These phone calls may seem like we are coddling Jake too much for being in 5th grade, but I think it comforts him as well as extinguishes his fires.
Also I appreciate my boss's latitude for taking the calls, as she is very understanding and advocates for kids with special needs. She (my boss ) also lets me leave work on a dime if I absolutely need to go up to the school. She was in a much more challenging situation than mine, so she understands that my child's needs should come before my job. I know I am very lucky in this area, and probably will not find another employer that grants me the flexibility I have now.
Jake's anxiety was elevated when he received a small spider bite. One of his peers told him that he "would die in 2 weeks" from the bite, and of coarse Jake believed the kid. Which led to Jacob over reacting and obsessing about it. He told his teacher, and of coarse that was one of the phone calls I received during the day. I tried to assure Jake that nothing was going to happen of coarse, and his teacher also tried to comfort him. Trying to get any idea out of Jacobs head, is nearly impossible sometimes. He will obsess about a certain thing for days, months and even years! I really don't think he gets the concept of time, and is not able to have closure.
During Science class (mainstream), one of Jacobs teachers noticed him placing 2 tennis balls and a pencil down by his crotch area. He said he wanted to make the other kids laugh, however the teacher wasn't laughing. She labeled it "sexual harassment" and off to the office he went. Oh boy, another phone call to mom. The consequences was for Jacob to eat lunch alone, separated from the lunchroom, and no recess for the rest of the week. It was hard for me to keep a straight face through this one. I am questioning this mainstreaming idea. Thinking it is not so good for Jake. The teachers don't seem to have the same patience, and Jake is getting penalized for their lack of teaching skills. They seem to be more rigid, less flexible.
Of coarse after every incident, at home we have to have a heart to heart, explain the reasoning, consequences behind it all. I tend not to punish him at home, because he is already getting the consequences at school. However, I feel I need to still address it at home.
Thank you God for getting us through April!!!!