Saturday, September 1, 2012

So Much Fun so Little Time Brought to you by the Month of August

The month of August has come to an end. What a month it has been! We tried to fit in as much fun as one family could because school would soon be back in session. We had a trip to Worlds of Fun with a friend of the girls, and to also meet my childhood best friend, Sara and her beautiful family. The Mamba had several malfunctions that day and the kids were bummed they couldn't ride their favorite ride, but we rode every other awesome ride.

The kids have us on our toes hopping from one thing to the next. The girls decided to join the fall softball league, so there have been practices and games occurring. At the end of the month we began soccer for all THREE kids, and this time none of the kids share the same team, so there are 3 separate practice and game schedules. Add to the mix Jason and I decided we needed to do something for "us" so we joined a coed softball team. How I absolutely love that sport, and it does an amazing job at relieving stress!!

A quick "down" time enjoyed before heading out for soccer practice

School eventually had to resume and I am now the mother of a middle-schooler. Such a bittersweet time! I have been anxious about this change for Jayden, just knowing he doesn't always handle change the best. I have already had a meeting at the school to discuss the events of the summer (the official diagnosis of Asperger's). While I walked out feeling good, the more that time passes, the more I do not feel it went well. I was told Jayden would need to be placed on an IEP to ensure success by the doctors that tested and diagnosed him. The school (and this really should not be a surprise) still was adamant that he did NOT need an IEP because Jayden is still learning and progressing despite all the concerns for his slow educational growth.

Here he is on his first day of middle school

My girls on their first day of 2nd and 3rd grades
I have placed Jayden into a therapeutic organization that specifically deals with children on the spectrum. The first meeting took place last night, what I like about this agency is that they do in home therapy, to see how our family functions, to see how Jayden functions, to give us and him advice on how to better cope with the daily challenges of autism. Jayden's therapist's name is Denae, and she is a very bubbly silly person that I believe will fit well into our lives. She said she wanted to know Jayden's soccer schedule so she could attend a game. Eventually she may decide to go to the school to see how Jayden's school day goes and to see how he is doing with those everyday challenges. She is also very concerned that he does not have an IEP in place and she assured me that we will ensure Jayden has every opportunity in the world in place for him to lead a very successful life. So even though I already met with the school I may very well in the near future request another meeting, one that will have Denae involved, because she advocates so well on behalf of her clients. I know we do not have the worst case scenario as far as Autism, but it is tough none-the-less.
However I am still pretty much in the frame of mind that the last 11 years I have done a great job as being Jayden's mother, I don't know what could come about this. I have to learn to open up and accept things. Things that would drive me to insanity about Jayden is because of his new found diagnosis. I had NO clue that children on the spectrum have sensory issues as she stated he feels things 10x more than the "normal" person. So when Jason and I had to tackle Jayden to clip his nails because he said it hurt too much to get them clipped, he was to a certain extent right. I feel like I abused my child and how that makes my heart hurt. Autism is a problem with the frontal lobe and that area of the brain is responsible for so many important things. Things like social skills, and memory issues, so when I would give him a task of 5 things to complete (get dressed, brush your teeth, comb your hair, put on deodorant, make your bed) I would get frustrated because even if those things happen EVERY.SINGLE.DAY, he was never able to complete those 5 things with out me reprompting his from one event to the next. I remember once asking him "Jayden, seriously we do this everyday, why can you not figure this out?!" The truth is, he can't and again I emotionally abused my child instead of just accepting him as he is. Things just get jumbled in his brain and now it is my responsibility as his parent that I find things that will help him in all areas of life from daily living tasks to those important milestones.

Hurricane Isaac made landfall earlier this week in the gulf coast region, little did I know or even expect for it to make such a weather impact in our area. The first day of rain was good, we have not seen a good rain for quite sometime. I took that time and did some "deep cleaning" because we all know that dust and dog fur and kids happen each day. Today, is the second day of "Isaac" rain and well it definitely rained on our parade, as it cancelled our small town parade. So today, we will make another day of games with the kids, that never ending cleaning stuff (dishes, laundry etc) The sun will surely show its face again soon.

Waiting for the parade that wouldn't be...I love their happy faces!
One last note, Jason and I have joined the Kansas City area walk for Autism Speaks. We will attempt to raise money so that children like Jayden get the help and services they deserve, to raise awareness of Autism spectrum disorders. Something that will "never happen to us" happened to us and it is such a wonderful feeling to know that there is a community of support out there, and I know I am just beginning to touch the mountain of support there is. If you choose to join us in the walk or donate, please know that your support is greatly appreciated. Our Team name is Team Jayden or look for a walker (Angela Cook)
Until next time,

Wednesday, August 8, 2012

Journey to an Asperger's Diagnosis

I have contemplated writing this for sometime. Lately more and more people are coming to me asking just how we got Jayden diagnosed on the Autism spectrum as Asperger's Syndrome (Aspie for short) so I figured it may just be a little easier to write it and it may be easier to tell it when the next person asks. I mean, I understand, how many 11 year olds are "finally" diagnosed on the spectrum and getting the diagnosis they deserve to help them succeed in life? I am still learning, and will continue so every day of my life, just so I can understand this child that Our Maker created just for me.

They say hind sight is always 20/20, how that is soooo true!!

The first question always seems to be "When did you know there was something wrong?" First off, there is nothing "wrong" with my child, different yes, but not wrong. I would have to journey back to when he was 2 years old I knew there was something different, but I pushed it aside as a "terrible two" issue. The red flag warning should have been when I took Jayden in for a well-child physical, something had gotten Jayden so upset that he picked up the steel trashcan in the doctors office and threw it. Why? Not because he was a terrible child, because this visit to the doctor changed his normal routine. I quickly learned that even if I give a 2-year-old a 5 minute warning that things would be changing we could avoid melt-downs. Unfortunately I did not follow the recommendation of his doctor to get him evaluated, because again he was in his "terrible 2's".

So life continued for us, we added a sister into his life. That "change" was a difficult experience at best. I would always brush it off with well he got to spend 3 entire years just him and I. And 20 months later we added yet another sister to the mix. I took him to preschool when he was 4, it was then that I had a "problem" child. I never put the pieces of the puzzle together until first grade. The pieces fell into order when Jayden's first grade teacher left for maternity leave. Jayden simply could not and would not handle a substitute teacher, despite my lack of trying to tell him that this teacher deserved the same respect as his normal teacher. Almost on a daily basis I would get a call from the principal "Jayden flipped over his desk and chair and became very loud" nice words to describe him screaming huh?! Finally we got him to say, "She is not supposed to be my teacher!", There it was...he doesn't like substitute teachers. Second and Third grades were very similar except the fact that teacher's were not absent for maternity leave, they had meetings or sick days. The school by now knew his triggers, so to help avoid them they would place Jayden in one of the other second/third grade rooms with a teacher that is always there. Did it help? Maybe, but not a huge difference.

Bring on the fourth grade. From the beginning of the year I knew that this transition was going to be tough. We had moved within the same school district, but it was a different elementary school. New classmates to go along with a new teacher. I forewarned of Jayden's tendency to hate substitues. I got Jayden into counseling to help him ease into the school year because he was scared to death of being the new kid. So counseling was suppose to help him open up, but all it got me was, "he's such a good kid I don't see anything wrong." Really??!! OMG, so maybe you should TALK with him instead of letting him engross himself in moon-sand for the hour. She would come out and say "we really didn't discuss much, but we made up some cool sculptures with the moon sand." Trust me I get the benefits of play therapy, but how was this going to solve my morning battles of getting Jayden to school when he flat out said "No one likes me."? It did not help that out of 19 children Jayden was one of four white, English speaking students, I would imagine having an incredibly difficult time as well.

It was this time frame that he had "papers" due. We found a subject that intrigued him, the Titanic. I promise you, if you ask him about the Titanic you might just find your mind spinning. (that is if he is comfortable talking to you, if not your likely to get a shoulder shrug) He also has other "intense" areas of interest, video games (I wish I could chuck those stupid things!) he loves driving by cars and naming the make and model of vehicles, he briefly even entertained an interest in Amelia Earhart, but that wasn't loved as well as the Titanic, and did you know the Titanic had 2 sister ships that also suffered similar misfortunes??!

So yes, 4th grade sucked...but 5th grade was by far the most difficult. This teacher underwent back surgery right away the beginning of the year, so we started out with a bang...quite literally, he shoved desks around and snapped pencils in retaliation to these substitute teachers. I was horrified, didn't get it, I made him write apology letter after apology letter. Trips or calls from not only the principal, but another "regular" 5th grade teacher was almost on a weekly basis. OK, so we have established Jayden strongly prefers one teacher the teacher that was introduced to him on "back to school night" and despite reminding Jayden that your just going to have to deal with it, because teachers get sick just like kids do. Nothing seemed to click.

The second half of 5th grade was more difficult. There are things that happened that led to Jayden staying and completing the 5th grade at a different school. The same "triggers" repeated at this new school. This time there was another "new" symptom. Arguments over the words "toss" and "throw", "shut" or "slam" words that may sound the same to you or I, but these little words would cause serious big time, melt down, temper tantrum melt-downs. I thought temper tantrums stopped at some point??!! They do, as kids get older they are suppose to find other ways of communicating appropriately.

Jayden is also very affectionate towards myself and my mother, we always contributed this to the fact he is just a cuddle bug. However, looking at peers his own age, they are not kissing their parents in front of others (I remember when my mom asked for a kiss before dropping us off in front of the school, it was like are you kidding?! She finally would stop about 2 blocks from the school and have us exchange hugs and kisses then instead of in front of the school.) Jayden is 11, he is taller than I am (yes I know that is not a difficult feat) but he will still rest his head on my shoulder, chest or even lap. I get all the rewards I need from him in the form of hugs, kisses and cuddle time!!

So the bottom line, I have a very affectionate, loving Aspie child. There are challenges, but please tell me the name of one parent who doesn't have a hard time parenting at one point or another?! We as mom's we stick together, we help one another. I just happen to get the privilege of getting loved on a little longer than "normal" :)

This Aspie Journey journal is just beginning, I am sure there will be lots more fun in the coming future. If you have questions, please ask, I am not offended. Just know that there really is not a "typical" aspie child. They don't all have ADHD, and for some reason the school professionals thought they are intertwined...They are NOT!!

Ending it with a little funny, so Jason and myself took Jayden on a trip to the Amelia Earhart festival in Atchison, Kansas. Jason and I were talking about a bucket list, and we both agreed that we had to have a vacation in Hawaii before we kicked the bucket. Jayden was in the back, listening and finally asks "what bucket, I don't see a bucket!" That right there is your "typical" asperger's child they are VERY literal people!!

Thursday, July 12, 2012

A Stranger's Perfect Timing

Some know, some don't know. The last 7 months of family life has taken a drastic turn. This so called path that life threw at us, had knocked us down to our knees begging for understanding, and so many cries to God for strength to get through just to get one more breath in to be able to move forward. Somehow, someway we are here today, stronger than we were, we see that light at the end of a very dark path. It is not officially over, but there is a new, perhaps even brighter path forming in front of us. (I apologize for how broad this is, but I am not yet ready nor do I know if I will ever be ready to share this chapter of my life with the world. There are a very few select friends that know and have shown me an overwhelming amount of support, each night I give thanks to The One above for these people).

Enter the month of June with me. The girls are in full swing of their 8U (8 and under) softball season. We versed this one team, one that stuck out for me because, one they had the same dark green uniform as our teams shirts, and two because there coach (or assistant coach) was so stinking loud and obnoxious, lets face it we all have encountered that person. All I could do was shake my head with disbelief with her sarcastic nature. She flat out yelled to a parent "Come on, in the 9 years you have known me, when do I shut my mouth?!" Whoa!!!

So our De Soto team keeps playing and we come out with 0 wins, the other De Soto team wins I believe 3 games, 2 of them to our team and one against another team. Now we have entered July, so when entering this Wellsville 8U tournament, even though we combined our 2 De Soto teams no one expected us to do well in the tournament. The second we got to the fields and settled down, I hear that dreaded loud voice again, all I could think was "oh, great its that team again." Somehow we won the first game, by 1 point, but its a win!! She came up and said "Good game De Soto" followed by that clearing the throat we know we will win over you type thing. All I could do was repeat her words back to her, we shared a brief smile and walked separate ways.

Day 2 of our tournament we thought we would play the winner of last nights other tournament and it ended up not being so. (wipe the sweat off the brow) Our girls pull out another win, 16-7 as a team we are all beaming with pride and go to the adjoining park to let the girls play some. Then here she comes, being loud as ever. Even though I tried to move away from her I somehow ended up right next her. She talks, I listen. She yells "Bean, what are you doing?!" we all look over and see a girl sliding down the slide doing the spreads (or splits, I get those 2 mixed up). So then we start talking gymnastics, Kaitlyn is a gymnastics enthusiast. We have her enrolled in a company that just told me they would not advance Kaitlyn because of her "attitude" but yet she still has all the skills mastered for this level. So I asked where she went, she told me but they are a competitive gymnastics, I know Kaitlyn is not ready for that just yet. She continues and says she has problems with companies because of the fact her daughter is missing a foot. (How completely ridiculous)

 The next night we had to verse her team, she is still loud but now I am seeing a different side to her, so I am becoming a bit more accepting. We win this 3rd and final game 10-8, we are the Champions of this tournament! We head to the park once again this time to celebrate with a cookie cake (from Sam's, it's a must try if you haven't had one!) and watermelon.

Here she comes again and she had to tell another child that it was ok to tell her son to get away from her. That he has Asperger's and sometimes he doesn't get the social cue to leave people alone. The word Asperger stood out about as much as I just bolded it for you. Jayden has had this "different" personality his entire life, it really wasn't until the last few years I began to question his development. He is still pretty clingy and as he ages it makes people feel uncomfortable. Not to mention that there is a clear delay in reading, but the school is blaming on fluency problems.

I release this part of me, and ask her how she knew, how did she find out? She just said let me get your number and I will get you a number. She walked away and came back. This time Jayden was standing right beside me. I just introduced them "I said Donna, this is Jayden." Its like a light switch in her demeanor had switched, her posture even changed. She held out her had and said "Jayden, my name is Donna, its so very nice to meet you." Jayden just gave an awkward smile in return. He stepped back and she looks at me in my face, and says "I definitely see it. She turns to Jason and says be prepared for not many nice things to come of this." Her son, her precious child is 13, has a 4.2 GPA but is the subject of torment at school. She told me that her son refuses to go into the locker rooms at school, kids twist his chest and poke him. He has even come home on three separate occasions and wanted to kill himself.

This is where the differences are coming into play, Jayden lacks not only social skills but academic skills as well (maybe this is why it's been a difficult journey to the Asperger's diagnosis, as Asperger children tend to be known as mini professors because of their outstanding abilities) It appears to be true for Donna, however. Just ask Jayden about the Titanic and you might find yourself amazed at his knowledge of that.

So while I am scared of the official diagnosis, (his assessment is planned for July 19) How life has lead me to this loud, obnoxious lady is beyond me. It is not my position to question it either, just accept it, and embrace it. She has walked this walk, and I finally have met another person who understands this difficult portion of life. We exchanged numbers and have already been texting this morning :)

My love for Jayden will never change, he will always be my baby boy and I only hope for the absolute best for him. Jason said something to Donna last night and her response blew me away. Jason said "It's ok, we will get him (Jayden) fixed." Donna shook her head no and said "no, he's fine there is nothing to fix because he is perfect."