A journaled story about our travels with Aspergers Syndrome and the lessons that it has taught me.
Tuesday, August 31, 2010
First Day of School
I think we both survived! I did not stay home and part ways with him I did not dwell on it too much through out the day and only called our sitter once to see how he did. She was sweet enough to send me some pictures of him getting on the school bus! It was just so sweet overall!
He did not come home with a note from the teacher and he told me all about his day which sounds like it went off without a hitch! COMPLETELY!! I could not be a prouder mama of him than I am smiling from ear to ear about right now! My babies are growing up it is all entirely just way too bitter sweet! Way too bittersweet!
Monday, August 23, 2010
School and Blog
I found out that she has actually been teaching for two years. Her first year she worked with special education as a floater in the district. WONDERFUL! Right! This to me implies a teacher with patience, some understanding, and cognitive awareness that is okay to be different right? I cant say yet but that is what I am hoping for. I dont want Noah to get 'special' attention for his diagnosis. I just want him to get the attention that he needs in order to thrive in the scholastic environment. Socializing himself into the school is going to be challenging enough for him as he grows up, I want him to know that it is okay to be different, it is okay to think differently, and we all do not have to get along! I would like for teachers to be able to cultivate the talents of their students and understand we do not come in standard sizes! Who in their right mind thinks that everyone has to get along all of the time or always get perfect scores on a test who thinks this is just wasting energy and expunging the many talents we could have in this world.
Okay, I openly admit I have wasted half of my life and my energy trying to find ways to get along with people when in reality it would never happen no matter how hard I tried. It is afterall what helps this world to go around. It is sad that I am finally realizing this but again it could have taken me another 29 years to realize this. I firmly believe that the connections we do make in life are for a purpose. A purpose that we may not understand now or ever but they do have a purpose to help us navigate this journey called life. It is with this mindset I hope to instill into Noah as he starts his journey through school. I just hope for him to learn from me the lessons I have already learned in life so that he can spend his energy on alternative areas - like becoming a world reknown videogame master! (thats his current dream)
A friend, I call her a friend becuase I have openly confessed more to her during our work time together than I think I have with most individuals, sent me a link to a blog today. It was a very aw-inspiring blog that finally taught me to do what I have been battling for the last 29 years and 10 months of my life - just trying to be accepted - just trying to be understood. Well thank you to my dear friend becuase even though I do not have the diagnosis of Aspergers or any autistic spectrum disorder this list of 10 things about Autism I feel not only applies to the behavioral disease that I am battling with my son in how to be a good nurturing parent to him but it also helped me with letting go of a few issues that I have been having over the past 29 years and 10 months. Thank you.
Saturday, July 24, 2010
The Appointment
We talked to the post-doc that was gatherin his assesment. I did not have all of the reports from Noah's psychologist with me despite my phone calls and emails to him for the last two weeks. We still have no clue as to if he is going to be officially diagnosed with Aspergers or ADHD or both. I know nothing. Not even an inkling of what may be , if anything is going on. All I know is that since we started with our sitter Mrs. B he has remarkably improved all around. Both boys have. I cant say enough as to how great she has been for them. I am sure she is exhausted by the end of the day but I pray that she just keeps on going with whatever it is she is doing because its working. Man I wish I had her skill!
Anyway we are back into the waiting game as to getting diagnosis or outlook on his behaviors. Back onto waiting until the end of September. In the meantime we have school transitioning to get him ready for and that in of itself just may be interesting. I am nervous as heck to get him in there and on a bus but I know that he will have eyes looking out for him all around. God I hope he has eyes all around looking out for him! I love that liitle guy so much I just dont want him to get lost or beat around by anybody. School should be an exciting time for him but its a scary and nerving time for me! and dad!
Sunday, July 18, 2010
Broken Links
So things have been pretty busy over the past few weeks with work so I have not had the time to settle in and blog about the latest happenings. I am sure you can pretty much guess the frustrations I have encountered this past week with his doctors. Yes, I am still struggling with his diagnosis it just is not settling well with me right now. I can not get in touch with any of his occupational therapists, speech therapist, get return phone calls from his psychologist, etc. HOWEVER I did get a surprise phone call from the Childrens Autism Center. After 5 months of waiting. . . HE GOT IN!!!! So this Friday I am taking half of the day off of work to march him on down there for the first of what could be four appointments to assess and begin treatment pathways for him.
I am hoping that I will also know more on Friday that can give me the second opinion that I need as to does he, or does he not have Aspergers? I feel as though he just walks such a fine line with it that I am not swayed one way or the other. Then, he will do something off kilter that just brings me back to thinking okay maybe he does have something going on. It is so challenging to interpret just what it is that may be going on with him because it is a spectrum disorder, or so they have told me as I battle my questioning of his diagnosis. Things have been stable for him lately so maybe that is the mirage that has been pulled over my head lately. There are just so may maybe's right now I need to just wait and see what happens on Friday.
Tuesday, June 29, 2010
Labels
When I look at him I don't see Aspergers I see a five year old boy that is full of life, curiosity, loves Lego's, blueberries, and playing computer games. I see a boy who can't go to bed without giving me a hug and a kiss five times over, sleeps with his special blankie, and always has one last question before settling down in bed for the night - and yes another after that last one! Labels are just pre-judgements of what people think someone or something is going to be like without experiencing or getting to know an individual on their own terms. We all experience this at one point or another from both ends of the deal. It only makes us feel small and unappreciated in the end.
Considering that Aspergers is a spectrum disorder I still struggle with Noah's diagnosis. I struggle because some days I see the symptoms of what is wrong with him but other days he seems like a classic five year old (note I did not say normal - what is normal?). My fear is the title of having Aspergers will already set a alarm of prejudgement off in the minds of his future teachers and peers that they will put him under a magnifying glass above the rest of his class and he will be challenged even more to making friends. Luckily, my fears are just that right now fears. They have not been turned into a reality . . . yet. Our sitter Miss B is awesome! She sees Noah, and all of the kids as who they are. They are all treated the same and given the same expectation yet she understands that each kid has to be tailored to understand her rules differently. The school system however, may not see it this way all of the time because they expect certain behaviors through their previous experiences with kids on the autism spectrum.
The only benefits I can see of having a title/diagnosis is that it does set the bar and the notion that he does have the need for extra help and he does have the medical diagnosis for a reason to receive that extra attention before his behaviors classify him as a bad student. All of this screening from the occupational therapist, speech pathologist, opthamologist, psychologist is heavy on our calender and the gas tank. Yet, I know that through these tests and diagnostic screenings we are aiming to treat his symptoms not the title. He will always have a Title in his medical records and be labeled as having Aspergers but his symptoms will improve and he will always be OUR Noah OUR son, just with a something a little special different.
Sunday, June 27, 2010
'Monkey Mind'
. . . Buddhist call the "monkey mind" - the thoughts that swing from limb to
limb, stopping only to scratch themselves, spit and howl. From the distant
past to the unknowable future, my mind swings wildly through time, touching on
dozens of ideas a minute, unharnessed and undisciplined. This in itself is
not necessarily a problem; the problem is the emotional attachment that goes
along with the thinking. Happy thoughts make me happy, but - whoop! - how
quickly I swing again into obsessive worry, blowing the mood. . . . the other
problem with all this swinging through the vines of thought is that you are
never where you are. You are always digging in the past or poking at the
future, but rarely do you rest in this moment.
Wow!
I could have said it better myself!! We all experience 'monkey mind' at times in our life but the thoughts that pour from Noah's mouth only remind me of his constant swinging and shifting at his own pace. The only way for him to find a presence is to
find a way to 'be here now' and focus on the current presence. But, how, how do we accomplish this with a five, almost six year old that all he has known is the swinging of thoughts and emotions that flow from him and in the world around him? I am against medication because it is from the thoughts and active mind he finds some of his most creative and ingenious abilities. How do I balance his ability to
think creatively without medication turning him into a zombie so that he can also be socially accepted more? What is better? What is more important? The struggle for balance continues . . .
Friday, June 25, 2010
Aspie
Today Noah went to the occupational therapist for an evaluation because we had noticed some delays in his gross motor skill development. The poor guy cant even skip or hop on one foot! Well at least that is what I thought was the only thing wrong. Do you remember an earlier post where I may have sounded like I was in denial that Noah even had Aspergers? Well I have had feelings of this lately that he doesn't have it kind of like finding out I am pregnant and not really believing it until they were actually born (yes even while they were kicking me from the inside out I found it hard to believe I was really pregnant - all three kids!). One of the notes from the therapist came back with something that I found to be revealing.
Noah had a lot of trouble in understanding and taking verbal direction. The more the therapist spoke to him the more aggravated he got. I am in the meantime having flashes of Rain man float through my head of him holding his hands over his ears. Now, Noah has mentioned in the past that there is too much noise, someone is talking too much or too loud, etc. This may be a start to a wake up call and realization for me that there is something different about him. Yet I am one to understand and recognize that we are all entitled to be different heck I encourage it! But being different with a diagnosis is something that is new to me to grasp and understand.
It would almost be easier to explain to individuals around me that if Noah had some disease or blatant rash that they would understand there was something wrong about him that needed to be treated. But, a behavioral disorder like Aspergers is much more challenging to explain to family who see Noah as, Noah. So the evaluation report has opened my eyes and allowed me to draw upon some comparisons of his behaviors to the background reading that I have done. Being sensitive to his surroundings, noise, smells, not being able to interpret feelings of others, yet gives out a lot of love and attention to others around him. It all sounds contradictory doesn't it? I can never put my finger on it I cant place my thoughts in order the symptoms, the diagnosis it all adds up and does make sense but at the same time I remain confused and bewildered that there is actually something negatively wrong with him. Should I continue with the therapy that eats away 6 days a month of my work schedule? or just let him be the child that he wants to be? the child that he is? Hes just a special different.
Monday, June 21, 2010
"Mommy you're beautiful!"
Throughout my day at work things continued to pile on top of me I really feel smothered at work. Thankfully this helps the day to fly by fast but at the same time I come home exhausted! The only thing I could think of all day was that short little phrase that Noah had said to me that morning. It was better than drinking 5 cups of coffee and really brightened my day, all day long. Such a simply phrase from a simple boy helped to keep me charged through my day. I wonder how much such simple phrases that I can say to my kids or those around me would help to cheer up someone elses day and keep them charged for what ever they too may encounter through the day. Then, imagine further if one person said something nice to someone every day how much more of a happier world that we may all live in.
Children with Aspergers are stereotyped as having the ability to not understand or are able to interpret the emotions of others well. Now I smother him (all my kids) in hugs and kisses before I leave and come back from work as well as before he closes his eyes for bed. I know he understand it because I see smiles on his faces but still what remains remarkable to me is that he will always say something nice and reason with me as to why he thinks someone is beautiful or why he loves those around him. However this again astonishes me because he is able to project reason with emotion yet when something in his environment changes around him or a situation occurs around him he has larger scaled reactions to situations. I just believe that those with Aspergers have a ability to inherently feel things at different levels that a 'normal' person hence the over reactive states that he can reach when not able to gain understanding of a situation immediately. Hence, the small and yet simple quotes that he says but so many of us 'normal' people to do not say to each other.
The labels that we put on kids like Noah as having Aspergers or autism - or any disorder at that - are just that a label. It is not who they are. Because I for one solely do believe that we can always learn from each other, the small and the big people around us, the sick and the meek, the rich and the poor. I for one did learn this morning that I was in fact a beautiful person and I had to be reminded of that from a five year old boy that has been diagnosed with Aspergers. That five year old boy whom I love and am thankful for each and everyday of my life!
Saturday, June 19, 2010
Broken Records
Noah on the other hand, no matter how many times I talked, yelled, cried he would still persist on following through with what his mind was set on, even if it mean running into the middle of the street with a car barrelling down it. He has sent my heart into my throat and back down to my gut so many times I have lost count. Trying to control my frustration and anger over him not listening to me to clean his room, put something away, stay seated at dinner is very difficult. For the longest time I thought oh, its his age, he'll grow out of it right? or he'll learn and he wont do it again right? Maybe I should have sensed more of his syptoms after taking him to the ER three months in a row, almost do the day of each other for stiches in his head after falling onto our coffee table (which has since been sent to charity), or maybe the time he had to get stitches in his thumb for slicing it open after telling him 200 times not to play with knives!
However, its not just the immediate consequential actions that he has not learned a lesson from that tire me (and my wallet) out. Its the emotional exhaustion of reminding myself to not raise my voice, be calm, dont overreact. . . then it hits me, he asks me the same question for the fourth time after I answered him. And I assure you it was not a half-witty answer I really gave him an anwer to his question. I feel like my role as a mother to him is constantly is replay. Almost worst than what a broken record may feel like going round and round on the turntable. In fact sometimes I wish I was that broken record hitting its pieces on the needle over and over again, it would certainly save me a lot of brain cells from being damaged!
All week long he has been asking me to take him back to that "lego building place." It was a one time event that a city next to us had going on at their local childrens playhouse. He did have a lot of fun as I thought he would due to his obsession over legos. So we took him, his brother, and his cousin to go build legos for literally four hours! They all had fun. After reminding him it was only going on on that special day he tends not to remember that it was just for one day. Instead he has asked me everyday since then to go back to that place so he can build legos again. Now I am still confused and trying to disseminate what is just being childlike and what is Aspergers. I still feel that he does not have a strong case for Aspergers but there are days that I just use it as an excuse to his behavior.
If it were not for us having other children in the house and around him I probably would not have sensed the differences between Noah and the other kids. For now I will remain a broken record but hopefully a record that has settled down onto the turntable a little more that can face just a bit less resistance everytime I hit that needle on the record player.
Friday, June 18, 2010
Change
He is often confused or angered by change. More than often his emotional state turns into a temper tantrum of resistance almost as if his anger is going to stop or prevent the things around him from changing. This temper is more than often hard to break him free of for a period of time. I can understand his anger. He doesnt like change and develops a highly stressed emotion when he cant control it- he likes things how they are. Now, most of us do not act out this way we rather internalize our feelings about change around us a little better than him. But, in reality how does it really affect those around us? I have noticed for one that I have become rather grumpy this past week and enter what I call survival mode. Trying to find a way to make my world better while those around me are changing. Most of us just find a way to step back and absorb what is going on. We all handle it differently.
Challenging myself this week in trying to understand Noah and how he thinks and feels has really enlightened me into seeing things in his perspective as an effort to find a way to develop actions or steps that he can practice to soften his symptoms of Aspergers. The ability for him to see the big picture from the changes that he will face in life already faces a huge impairment just from the way that he thinks overall. Training him to understand everything has a consequence to an action whether it is good or bad will be a long process but I know in my heart that he will persevere and find his own way to handle change, just as many of us have grown to do in our own lives.
Tuesday, June 15, 2010
My reading child
At any rate he did excell in reading but all other areas of comprehension, math, writing he does need some work in. Though the questions he failed at in his test he answered just fine for us at home. Who knows. A test is just a sample of a range of data. Its unfortunate we always look at the averages of everything. They really dont always tell you much to be perfectly honest!! There is a book out there called Outliers that I really want to read. Sure it goes back to the haunting days of statistics but I think we all need to look at the outliers and consider them in our analysis more. Then I think we would have a better grasp of what is actually going on in this world!!
For instance if i looked at Noah's average for his verbal to reading you would think they would be the same as they interpret the same skill sets right?! Wrong they are in fact inverse of each other as far as the scores go!! I cant really interpret anything from his IQ test results yesterday! Its frustrating but I will say that my mother hunches about him have typically be on the nose!!
So how does Noah think? Well he thinks like a kid on speed! Fast! He can be detailed and focused when he wants to and that was evident in his testing but he can also lose focus in an instant! Our next steps in working with him are to develop an IEP plan, go to speech therapy and occupational therapy for him to develop better articulation and balance. He will come to his own he already is, in the words of Shonda Schilling my "Special Something!"
Saturday, June 12, 2010
Smells like popcorn
Noah has been asking us and telling us about different smells more and more lately. How things smell and what he doesnt like the smell of almost sometimes to the point of where he will actually throw a tantrum if he can not get the sensory of the smell he does not like out of his head. Is this a part of his Aspergers? who knows. He has been digging deeper into our brains with his inquisitive questions I find most typical five year olds do not ask. He has no barriers when he asks individuals particularly our sitter like, "Do your boobs have milk in them?" yes, its funny but who asks that? I am glad she is so lighthearted about it becuase it is embarrassing as a mom to hear what your five year old is asking your sitter. But she does love his hugs and kisses throughout the day. Especially when he repeats to her that she is beautiful all day long.
Noah is just full of love and questions. He is a kid that I would not trade for the world. But sometimes when it comes to trying to redirect him or help with whatever sensory moment he is affixed in and can not distinguish its hard. We go to his psychologist on Monday to get his IQ test results back. Considering the boy has taught himself how to read and reads at or above the kindergarden level now, I am not weary of what the results will tell us. I just hope that it tells us more about how he thinks so we can start to understand more things from his perspective.
Thursday, June 10, 2010
Crazed
Monday morning he woke up feeling sick. Now I am yet to determine if he is actually getting sick or making himself sick. I can say this because being the middle child like himself I learned how to make myself sick purely through emotions. I would overwhelm myself so much with my feelings that I would literally make myself sick. So to be safe Joel kept him home that day and sent the other two to the sitter that day. Now, for the past few weeks Joel has been having an affair. Yes, he has been cheating on me and with a guy to boot! His name, Mark Twain. Hes nothing special, just an ordinary guy thats been around since before he and I met. Joel has been giving him a makeover and sprucing him up for the summer season. Yes, Mark Twain is his beloved boat whom I swear he loves more than me when the weather start to get above 72 for more than two days in a row! Anyway to get to the point about Joels love affair and Morgan staying home, being boys do you think they would actually stay home? on a nice day? NO they went boating!
It was a nice day (so I hear) and Morgan had the time of his life. Telling everyone at the gas station and Subway that they were going boating! By they time Joel had gotten done running his pre-errands before hitting the lake Morgan looked at him and said, "Daddy, can we go boating already?" the kid is just too darn cute to argue with sometimes! He must have exhausted himself by telling everyone because he was passed out before they even got to the lake! I am glad that they got to have a father/son day with each other that day. I was actually really hopoing it would help with Morgans self esteem. It appears to have done some good for him. Until this morning. . . .
He wakes up and hits me! Oh well, back to reality I guess. Three kids in one small house there is always going to be something to work on and yes, it can not happen overnight! Yes mom, you are right it can not happen overnight!
Thursday, June 3, 2010
The Value vs Price of a Child
You know it did get me thinking though. As humans we place prices on everything but ourselves. Sure we put a price tag on healthcare but each individual human does not have a price associated with their being on this planet (at least not since the days of slavery - I am talking US here not worldwide for the moment). But we do put value on our humans. We have to it establishes hierarchy in our lives. Who to hire, who to be friends with, who we want to marry based on the characteristic values we seek in those individuals. We place value on decisions in life. Like the pros and cons of going to work or staying home as a mother/father.
This week has started a life lesson for me in trying to "be here now" especially since my time with my family has a higher value placed on it as it has been limited due to my decision to go back to work. I enjoyed playing with Adelaine for an hour last night, flying up and down like an airplane, seeing her laugh. I enjoyed listening to my husband read the boys the book "No David No" its all about me starting to put my family first and then the house work can follow later. I just know that during the week its hard to tend to the maintenance of having a clean house. Letting other think that I am always together and instead letting the time I put into my kids shine through more by investing in my time with them even more!
Wednesday, June 2, 2010
Day 2
The stresses of getting home, getting dinner on the stove (fish tacos), spending time with all three kids now, running a few errands and just trying to find five minutes of me time whether in be in the bathroom trying to go pee without being interrupted by a kid or just being able to step outside was difficult to do. I do however recognize in some crazy future I may just miss my oldest son opening the bathroom door to see me sitting on the crown. He is so oblivious to even the thought of me being in there and will just talk to me as if nothing is going on. Rattling on about super mario brothers video games that he plays with his sitter and cousin. The boy is just hyperfocused onto the subject so much that he tells me at dinner that I need to get more "flower power" and help him be a Yoshi. . . .
Yes, Noah is my special different. He has Aspergers but in no way do we tell a lot of people about it other than close family and friends. He has been diagnosed with it but he is still his own special different. We are currently just in the research stages of it after getting the diagnosis in February and handling notes home from his teachers for the past two years in preschool. It was his first teachers Mrs. Julie and Mrs. Stacy that notified us the fear they may be a problem. Mrs. Stacy was quick to recognize this as she has a brother with developmental disabilities, in no way does Noah have them as severe as her brother but she just had a knack and the patience to recognize and work with Noah over the past two years, for which she will have no idea as to how grateful I just am for all of her help!
At the age of 4 when they first recognized it we could not do much for him. We had to wait until he was five years old to even start the process for a diagnosis. The diagnosis alone took three visits to the psychologist, Dr. Lofthouse. Which he then is leading us down a path of finding out how best to work with Noahs behaviors. I like him he isnt pushing medication or harsh treatments onto us and letting us call the shots. For now especially since it is just summer we are doing the pre diagnosis treatments to see how he thinks to gain a better perspective of how to work with him. So far we have completed the IQ test and we get those results back in a few weeks.
The next steps are behavioral and occupational therapy. I am sure he will turn out to be as unique of a kid as his dad and I were growing up. In fact I am positive of it!
Tuesday, June 1, 2010
Day 1 : Back to Work
I wrote a letter to the new sitter last night and I fear she is going to think of me as a nut job on verge of a nervous breakdown. I know she has a vast amount of experience watching kids. Heck she has kids of her own! There is just something about putting faith, trust, and well TRUST into someone else watching your own kids. Will they still grow up to be the way they will be had I stayed home. How will the baby take the new transition? after all this will be the first day she has two bottles or more in one day. Will my boys take well to her and still love me as their mother and not their weekend and night time care taker? The list can go on for eons. All in well knowing that our decisons have been made to go back to work. We have unfortuately reached a time in the modern era where it takes two to work. Especially if we want to enjoy the luxuries of traveling to nice places on vacation, going out to dinner, have a decent holiday with family and friends, as well as being able to enjoy low cost health care, save for our retirements and build college funds for now three kids.
Maybe it does not bother me to go back to work as much as it does some other moms. I really dont know any different to be honest. My own mother worked as she raised three kids. She raised three kids pretty much on her own as well and we all turned out fine! We're not out slashing throats or robbing banks. We all have college degrees, two of us Masters, own our own homes, cars, etc. So you know the more I come to think of all this nervousness I have been going through the past couple of days may be for nothing after all. Sure, I will miss seeing my kids more during the day and being able to hear more of the small funny things they say to me throughout the day (which I started a book of quotes on), but in the end we all just have to sit down, pray about our directions in life and go with where the path leads us. It is to each of us we have our own paths in life but it is not the path we take or are given (however you see it) but how we walk along that path. Our attitudes are the most important to not only ourselves as we travel but to those around us as well. In a simple statement we all just have to "be here now". From that I will do my best to live in the moment for those that are around me in that moment.