Labels

Labels, stereotypes, they are both the same and I have always struggled with this my entire life. Perhaps it is from moving around all of the time the other kids would have these pre-judgements about who I was based on their first encounters with me (I was not always the friendliest person - and still am not - we all have our days) This is just something that I feel and still battle with only this time it is over my son. My son who was give a diagnosis, a label of having Aspergers.

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.

'Monkey Mind'

I have been slowly progressing my way through a book by Elizabeth Gilbert, called "Eat, Pray, Love". Slowly because I have three kids and am not home all the time anymore. . . at any rate I was reading it today and found this amazing analogy that helped to open my eyes to some of the things that Noah may be experiencing with his ADHD/Aspergers diagnosis. She summed it up as having a 'monkey mind' and I quote:

. . . 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 . . .

Aspie

Does anyone but me find this nickname for a kids with Aspergers to be just strange, "Aspie". I came across it while doing some reading on Aspergers Syndrome. Why does there have to be a nick name for this diagnosis? I have just never heard of people giving nicknames to diagnostics before. perhaps I am too based in the research field to grasp this concept I don't know.

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.

"Mommy you're beautiful!"

This morning I was getting ready for the day and Noah walked into the bathroom and announced to me, "Mommy you look beautiful!"! Now, this is something that he has grown to say to just about every female around him lately. He's said it to Adelaine, the sitter Mrs. Beth, me, okay so maybe just the three of us that I know of. Its such a simple phrase that can be said by anyone but at the same time to hear this come out of a five year olds mouth so randomly can really help you to start your day out on the right foot.

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!

Broken Records

Growing up as a child I remember my mom always saying to me, "What do you think I am a broken record?" I am slowly starting to feel more of her pain and everyday with Noah. Before Noah was diagnosed with Aspergers I did recongize some strong difference between and his brother whom is 18 months younger than him. Morgan always seemed to understand what I was saying to him and would follow through with directions. He understood consequences for not doing the things that I asked of him and he understood my warnings of not to do things or he would get hurt.

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.

Change

One of the things that a child with Aspergers has increasingly difficulty with managing or even understanding is change. Noah is a creature of habit, a term that his preschool director Mrs. B once gave him and has stuck in my head ever since. Going through transitional periods we as parents have to prep him for change tell him what to expect, when to expect it and remind him of it several times over. As I go through a period in my life where I am surrounded by my environment and everything I have known before maternity leave changing but me I have to remind myself of this as well. However seeing how Noah deals with change and how I deal with change it turns a new light onto me in trying to understand how change makes Noah feel.

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.

My reading child

Yesterday we got Noah's IQ results back. I honestly dont know what to make of them or our doctor right now becuase the scores were being compared to that of a 'normal' child in his age rage. Noah was having a few rough days on the day of his test and even the doctor acknowledged that. So really, I dont think they tell us much!

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!"

Smells like popcorn

Yesterday morning I was getting Adelaine ready to head out the door. Noah walked up behind me after he had just helped me pick out a dress for her that day. ( A fushia pink ruffly one) and said "Mommy, Addie smells like popcorn!" I said, "She does? doesn't popcorn smell good then?" he replied to me, "Yes but she stinks like popcorn and she needs changed!"

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.

Crazed

Tuesday night I was baking some brownies for work the next day, humming to myself and just being in a good mood. Morgan walks up to me and just looks at me while I am still humming and says to me, "Stop it mommy you're dwiving me cwazy!" I was slightly offended by what he said and instead because he said it so darn cutely I just threw him over my shoulder and made it a game. Morgan I feel has been going through some adjustment lately and does not know how to talk to us about his feelings as of yet but I am glad that was a start for him in telling me he just didnt like my humming! (I admit I am not a singer thats why I played in band!)

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!

The Value vs Price of a Child

Last night I was checking out at on of the self checkout registers of our local grocery store. After I was done scanning all of our items Morgan turned to me and said, "Mommy!! you forgot to scan the baby!" I replied, "No I didnt!" He said, "yes you did!" Shaking my head after trying to get the last loaf of bread to scan after a faild 20 pass attempt, "Honey she doesnt have a price tag!" he just stared at me and folded his arms promptly and said "Oh".

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!

Day 2

Well, its day two of being back to work and yesterday went pretty well. Again we didnt have much going on here so I was able to get somewhat of my routine down and greased through. Adelaine however, did not have such a great day. She only ate about 7ounces from her bottle throughout the entire day and just slept the rest of the time. I do know that she does have some plumbing issues going on but I also recognize it will probably take her longer to get used to new routines than it would me.

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!

Day 1 : Back to Work

Three months have come and gone since I gave birth to our third child and first daughter. They have actually somehow managed to smudge themselves into each other and fly by quicker than ever. Time, it seems just goes by faster the older I get. Maybe its just more routine or 'smudging' that occurs as we get older either way today will be my first day back.
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.