Monday, June 28, 2010

Extra! Extra! Cargo has been found!

Sometimes I can't help but wonder what it would be like to be the mom to three neurotypical (NT) kids.  I think I know what it's like to be the parent of one NT child but there are moments when even he makes me wonder how NT he is (half joking here - he does model some of his brothers' behaviors).  Side note:  For those who have followed my blog, I have only referred to having one child on the autistic spectrum.  Diagnostically speaking, we only have one child with autism but we have serious concerns that another one of our children may have it as well.  While we await our appointment for his evaluation, we're just observing him and working with him as best we can.  There were a few moments today where my husband and I just laughed at how odd our life is.

My oldest son is incredibly energetic, creative and smart.  He constantly seeks knowledge and could spend the entire day on the computer without paying any attention to his bodily needs - seriously.  Of course, we don't let him stay on it all day and have found it to be a great tool to help improve his behavior.  Lately, we have been using computer time as a reward for certain desirable behaviors.  His current passion is creating cartoons online at  We have found his cartoons to be immensely fun and smart.  He has been writing them for a few weeks now but, today, as is so typical of him, he has added a new twist to this activity.  He has decided that he is a "newspaper boy" and it is his job to create his cartoons and distribute them to ALL of our neighbors.

So, here is my balancing act:  how do I reward his enthusiasm and his desire to share without printing out reams of paper and, most importantly, having to try to explain this newspaper to the neighbors?  For a NT child, parents could explain that he/she could just give it to a few neighbors.  They might whine or express a negative opinion but they'd move on.  Not my son.  He has made this decision and now it's my job to steer him gently in a way which is socially appropriate (since we don't know all our neighbors).  We gave two newspapers to two of our neighbors.  He wanted to print and deliver 2 more tonight but I convinced him we'd print one and then we'd deliver it in the morning (to give me a chance to figure out which neighbor we could give it to!)  Of course, true to form, he remembered my saying earlier in the day that newspaper boys have to deliver their newspapers very early in the morning (before his idea had fully blossomed otherwise I'd have kept my mouth shut) and so he went to bed claiming he was going to get up EARLY to deliver his paper.  All I can do is sigh and hope that he sleeps!

After feeling my oldest was taken care of and that he was off to bed, my husband and I then had to work with our other son.  One of his questionable behaviors is that he has certain rituals which cause him great anxiety if they're not completed at night (this could be explained by OCD too which he may have).  For him, he has to have the following things to go to bed:  his duck, 2 stories read to him, a "big" blanket (which means it has to stretch down to the foot of his bed), and - the most fun one - a Geotrax train.  Of course, it would be easy if it were simply grabbing a train.  Nope.  He HAS to have a train with parts (i.e., it has to have 3 cars), its remote, the cargo and the person that goes with it.  The critical part of this is that there are no substitutions.  If we can't find the person that goes with a particular train, the world has ended.  We can't throw in another person because THEY DON'T GO WITH THAT TRAIN!  Good Lord, have mercy on our souls.

Tonight, we found all of the train, the remote and the person but we couldn't find the cargo.  For those unfamiliar with Geotrax (consider yourself lucky) the cargo is usually a little box about 1" x 1" and they're each different colors.  We convinced him to get another train since we couldn't find the cargo.  We started pulling together all the pieces for another train and then couldn't find the last part.  BLAH!  Amazingly, I was able to convince him yet again to look for another train.  In a surprising show of flexibility, he actually accepted this train even though it didn't have cargo (it didn't come with any) because we convinced him the cargo was built into it (it's a firetruck train and we convinced him the hose was the cargo).  Now, if we did this for all the boys then a person could say it's our parenting but our other boys do not have such requirements.  They have requests but, even our oldest son, doesn't have anxiety-producing needs at night.  Thankfully, all 3 boys are sound asleep in their rooms and all is right in their worlds.

Being the parent of kids on the spectrum requires an unbelievable amount of patience and a talent for mediation.  Conflicts between their ideas of how things should be and what everybody else on the planet think happen minute by minute, hour by hour and so forth.  To survive, we have to constantly balance being a firm, compassionate parent who has to enforce rules with making compromises with our children in order to bridge that divide between the NT world and the ASD one.  We have fallen countless times but we have also risen way above our own expectations.  One thing is for sure, it's ever changing, it's complicated, and it is a challenge.

As I sometimes fantasize about being the parent of NT children, I find myself only wishing my life were easier and less stressful but I love my boys - NT, ASD, OCD, or whatever.  They are of me, from me and have been given to me.  I cherish them even when I'm stumped over why they think the way they do.  They are all beautiful in their own way - and you can quote me on that. 

Saturday, June 19, 2010


There is a reason why there are t-shirts which say something along the lines of "Autism:  Expect the Unexpected."  As much as I know this to be true, I still find myself stunned by my son's behavior even though I can usually explain it later using my "Aspie-glasses."  Of course, to pretend that autism is the only facet of life which can make life unpredictable is inaccurate since life can smack you upside your head at any given moment.  Perhaps, as is so often the case with autism, it's the degree of unpredictability, or maybe it's that the behavior exhibited by persons with autism can be so outside the norm that it is often shocking even if it is explainable later in terms of the condition itself. 

To be fair, life is unpredictable.  Things happen for better or for worse no matter who you are.  With autism, what is often a given for many people (certain established, acceptable behaviors) is not at all the norm for those with autism.  As NT parents of children with autism, we're often slapped into the awareness that our children simply do not do what the average child would.  It's that discrepancy (what we expect of a child of the same age as our child and what we actually get - usually quite outside the norm) which is truly shocking, disheartening and stressful.  To further confuse us, this same child will simultaneously do many of those things children of his/her age would do or, in the case of my son, appear older than his years. 

This past weekend we took the children camping up in northern Utah in the Uinta mountains.  Forested mountains with ice cold, mountain streams provided a perfect setting for a bonding, family camping trip.  With any trip, there is always the good and the less than good parts of a trip.  It is rare that a vacation is completely void of unpleasantness at some point, and a good trip is simply one where fewer bad things happen than good.  From that perspective, our trip was like any other.  Unfortunately, the parts that were bad on this trip would have been far worse emotionally for me if I weren't already somewhat of a veteran parent of an autistic child (and another child whose behaviors are becoming increasingly more suspicious). 

If a parent of an NT child had swapped with us for the weekend (without knowing our son was autistic), I am curious how they would characterize this trip.  How would they have reacted to being punched in the face so hard their glasses flew across the room after accidentally poking him while helping him get dressed?  Would they have been more shocked than me?  Probably, although I was quite stunned actually.  How would they have reacted to his ABSOLUTE and TOTAL insistence that he wanted to stay in "Coffee Car" (his name for a car, except it's pronounced cafe') because he was ready to go even though we had 3 hours before we were leaving?  Would they have been shocked when he screamed at the top of his lungs, cursing madly when he couldn't get everyone's attention (even though he had been monopolizing it for a good while already)?  I wasn't that shocked but he chose some particularly bad words which horrified his dear grandmother.

Of course, how would they have felt listening to him talk sweetly to his recently caught butterfly?  Would they have seen the beautiful sparkle in his eyes as he absorbed the beauty of the mountain stream?  Would his ferocious hugs and enthusiastic, heart felt "I love yous" have warmed them to his sweet, darling soul?  I'm not sure about how another would react but I am not unfamiliar with his amazingly sweet and beautiful side and his reactive, out of control side.  I know his true nature is good and loving and that his bad behavior is a result of his neurological condition.  Despite that, though, after particularly bad behavior (such as being hit by him), I found myself stunned.  When in that state of shock, I often grieve for myself, my family and my son.  I turn inward and try to heal the hurt while also trying to calm the natural, yet unproductive, reaction to lash back out at him.

Of course, his disability does not entitle him to abuse me or others.  It may explain it but does not excuse it.  After dusting myself off, mentally and physically, I then have to focus on helping him avoid such negative behaviors even if there may not be a chance for success.  I can't give up on him because, just as the imaginary NT parent I mentioned before, those who do not know and love will do just that. 

Although I had packed meticulously for this trip, I knew that autism would likely rear it's ugly head (while also showing its beautiful side as well) at some point during the camp out.  The unexpected was actually expected, but one can never fully prepare for the unknown.  In this case, it literally knocked me upside the head but, as always, I have to move on and prepare for tomorrow.

Tuesday, June 15, 2010

Spilling the beans

Tonight I found myself doing something that many a mother has done for their child, I was making a blanket.  Unlike so many mothers though, I wasn't knitting, crocheting or quilting a blanket for a young baby.  When my children were young, I didn't know how to sew and barely knew how to knit.  Thankfully, our boys' great grandmothers supplied our babies with a lifetime's worth of snugglies.  Unlike the light colored, soft blankets of infants, my son's blanket is dark blue with red stitching.  It is soft though and it was specially made for my child; however, this blanket is weighted. 

Children (and adults) on the spectrum sometimes benefit from certain sensory therapies.  For instance, children who have a difficult time remaining in their chair at school can be helped by placing a weighted cloth over their lap.  For many on the spectrum, the deep stimulation such as from such a blanket, is calming and soothing to them. 

It hadn't occurred to me until after I had spent several hours in my son's psychologist's office that my son might benefit from some sensory therapy (often a part of occupational therapy).  My best clue that my son might benefit from a weighted blanket was when I really observed him playing with his younger brothers.  What had been oddly baffling behavior, finally made sense to me.  He would ask his brothers to lay on top of him.  My oldest would be bright red in the face from having two 30-40 pound boys wiggling on top of him.  He'd laugh about it the whole time and they would too but I realized he was craving that sort of weight on him.  Clearly, this behavior won't be tolerated by his brothers once they're old enough to think he's being weird by asking. 

I decided that I would make him his own weighted blanket so that he could place it on him when he needs to calm down or when he just craves the weight.  I'm still a novice sewer but I managed to make a simple blanket for him out of soft, t-shirt material which I stuffed with beans and rice to provide the needed weight.  It was a bit tricky to sew, especially when I was sewing with the beans and rice in it.  The fabric was being pulled down on one side by the beans and was light on the other side so I'll admit that my seams aren't the most beautiful I've ever seen.  Despite how imperfect it was, though, I did feel a sense of pride as I was completing it - so much so that I got cocky and literally spilled a good cup worth of beans and rice on the carpet. 

After finishing my baby's blanket and halfheartedly cleaning up my mess (since the vacuum would wake the boys and we don't dare risk that!), I tried out the blanket on myself.  It is rather comfortable I'd have to say.  It is soothing to feel the weight on you, especially where you're tense since it helps to ease the stress in that area.  So, tomorrow, we'll see how my son likes it.  I already know my twins are already interested in their own and, of course, I can't explain that this is a special blanket just for their brother.  Perhaps when I make theirs, my seams won't be so crooked and I won't spill the beans.

Monday, June 14, 2010

Broccoli anyone?

My Mom has told me several times how, when my brother and I were just little guys, she would worry about her health.  More than once she thought she had some horrible, awful disease or illness and she would panic because she knew that my brother and I needed her.  Of course, she didn't tell me these things when I was kid.  She told me as an adult.  When she first told me I didn't have children so I couldn't really relate.  Since she was talking to me as an adult, it was clear she hadn't actually had a severe illness, only anxiety.

It's funny how life teaches lessons over a lifetime.  What once was an interesting (and surprising) story at the time, has become a part of my own reality.  I simply can't afford to not be well, physically or mentally.  Illness is not an option except it's not actually in my control or, at least, not completely.  I'll admit, I have had a few scares since I have had children.  I've even had a few surgeries but, fortunately, I have recovered and my life hasn't been in jeopardy.  Each time something like that occurs, though, it's a bit of a reality check because our life starts and ends in its own time whether we want it or not.

I'm fortunate to not have deep anxiety about my health but I am quite conscious of it, even  more so after receiving surprisingly disappointing lab work measuring my cholesterol.  After years of good results, I wasn't even awaiting the results of my lab work.  When the nurse called and told me they wanted me to try diet and exercise to see if that would lower it, it was like someone grabbed my face and made me focus.  Since I have been exercising religiously for the last 6 months or so, I knew that wasn't the problem.  It's either my diet (which is called the :left over, graze when you can diet") or my genes.  To be safe, I'm eating horribly healthy now.  I will officially say I'm on a diet which is a word I tend not to use because isn't everyone on a diet? 

I'm curious how I would have reacted to the lab work if I didn't have kids.  Would I be good for a few days then slack off, or would I stick it out the 3 months until the next time they drew my blood?  I guess there is no way to really know but I do know that, since all 3 of my boys depend on me (and some more than others), I have no choice.  I can't let them down by not taking care of myself properly.

My Mom is now in a stage of her life where she is not filled with the same anxiety about her life (at least I don't think she is).  Both her kids are grown and have their own families.  She has grandbabies who adore her not to mention her husband, my Dad, with whom she has been married for nearly 50 years.  Of course, I'm sure she has anxiety about us kiddos still and that she worries about how autism may affect her grandsons but I know she doesn't run to the doctor for every unidentified symptom as I am tempted to do these days.  As my boys grow older and more independent, I wonder how much they will need me.  Will I be able to relax about my health at some point, or will my presence be critical for their success in life?  Only time will tell but I will do my part now to improve my health in order that I will have a chance to be there for them for as long as they need me.

Sunday, June 13, 2010

Balancing act

I wish I could comfort him but I don't have much left to give.  For once, I'm not talking about any of my children but am referring to my husband.  I see the strain this weekend has had on him.  I recognize it as similar to my own and it pains me to see him feeling so annoyed, frustrated, exhausted, and miserable.  He walks with the heaviness of someone who is angry about his life, feeling as if autism has shat on our world.

It's important for me to say here that I'm not implying our children have ruined our lives.  Autism is just a part of our children (whether in its full form or in shadows).  We love each and every one of them.  Where we find difficulty is in dealing day to day with the challenges autism puts before us - the behaviors that belie explanation, those which exhaust all our faculties (mental, sensory, and so forth).  There are times when we simply don't get a mental break, where we feel sucked into this vacuum of stimming children, screaming arguments, the constant echo of phrases.  It can simply be maddening and there are times when there feels like there will never be a break.

Thankfully, I'm in a better place right now than my husband but it won't be long (probably tomorrow) when I'll find that same despair come bubbling up.  For tonight, though, I can help balance us out as parents as he does for me when I reach that same unfortunate place.  I wish I could find a magic spell which would lift this heaviness, anguish and frustration but the only thing which really seems to help is getting that precious and rare break.  If only I could build up my strength enough to give my husband a good, long break where he could reconnect with himself.  I'm hoping that as the boys get older this will become more of an option.  For now, though, I can only give him the space he needs to feel what he's feeling without annoyingly trying to make him feel better because, in truth, I can't sugar coat our life.  It's rough and sometimes it is pure hell.  Perhaps for Father's Day I will be able to give him what he needs - a break away from his family so that he can return to his flawed yet beautiful family who loves him for the wonderful father he is.

Friday, June 11, 2010

Check it out

Now that the boys are older (my oldest is 5.5 and the twins are 3.5) and since all 3 are home for the summer, I've been risking taking all the boys out with me by myself.  I've learned over the years that the key to success is preparation and I've heard other mom's of kids on the autistic spectrum repeat the mantra, "prepare, prepare, prepare."  Traveling with any kids requires some forethought, especially when they're young.  Traveling with one with diagnosed autism, one with possible autistic symptoms and one neurotypical child, requires an added level of consideration even if it's a trip to the local library.

Rule No. 1 is to know where you're going beforehand if at all possible.  When there is an option, I like to see where we're going without the children present so I can get a feel for the place (such as how loud it is), determine if there are too many escape routes for one adult to manage, and if there is anything that was a tantrum magnet (such as a toy store). 

Rule No. 2 is to have a plan.  If there are several different activities at one place then I like to let the boys know what order we'll do each activity.  For instance, at the library, I create a schedule which is simple and to the point:  1) We go to the DVD section and each boy can pick out 1-2 DVDs;  2) We go to the books and I'm more lenient about how many of them they can get;  3)  If they were good for #1 and #2 they can play in the puppet theater until it's time to go.

Rule No. 3 is have an exit plan which usually involves a "carrot" (something the boys will want to have such as a treat) to move them out of the place without a tantrum.

Sounds great, doesn't it?  Fool proof?  Well, not always.  Yesterday, I took the boys to the library.  Everything went smoothly.  The boys followed all the stages of our visit and cooperated like well behaved little boys.  Here comes the "but":  BUT I failed to prepare for the exit well enough. 

At our library, we check out our own books which frequently requires my oldest scanning the books since he's the only one who can reach the counter.  As I help my oldest scan books, one of the twins stands right by my side like a good little boy.  The other twin is being his energetic self and he has made a beeline for the sliding glass doors.  (This little guy has a thing for doors which is one reason I'm concerned he may have shades of autism.)  In front of the doors are the security scanners you have to walk through so that no one can steal the books.  As I'm watching my little one running around the scanners and opening and closing the sliding glass doors, I'm calling out to him to return (as loudly as I feel comfortable doing in a library) while subsequently shoving books to my oldest trying to finish scanning our huge stack of books.  If only we can scan them fast enough to get the little turkey near the doors.

My son goes out the door and stands just on the other side.  I can't wait any longer.  I think to myself how other parents would ask their oldest child to help them get their younger child.  I knew this was risky because my oldest lacks subtly when enforcing rules.  I also knew that these two kids are like fire and oil - an explosion ready to happen at any moment.  I was desperate though and felt I couldn't leave the scanner since there were other patrons waiting for my scanner.  Pretending that we're a normal family, I asked my oldest to go stop his younger brother from messing with the doors which were opening and closing with each little foot step.

Scan, scan, scan, as I watch the spectacle unfold.  My oldest runs and tackles my youngest who then fights back like the tough, little dude he is.  Scanning faster now, issuing futile orders from a distance, my boys are now a big tangle of flailing boys and a crowd of women have entered the library and are trying to get by them so they can return their books.  Such nice, sweet women with their jaws dropped at the violence occurring in their path.  I'm not done yet but I can't stand there any longer as I hear one woman say in a sweet voice, "Don't bite, hon!"  I grab the two by their shirts and drag them back to the counter while uttering quietly to no one in particular that "he's autistic.  I'll handle this."  I didn't specify which because, at this point, I might be talking about both of them.  I get my oldest to scan again while I try to restrain the youngest who feels totally betrayed by his older brother.  Meanwhile, my other twin, stands by my side sucking his thumb.

So, Rule No. 4 is to continue to improve your preparation and Rule No. 5 is to be prepared to live life in the view of other's misunderstanding and disbelief.  Finally, Rule No. 6 is to laugh because, well, what choice do you really have?

Tuesday, June 8, 2010

By your side

When I sit down to write a post, it helps for me to have a focus, something specific to write about but lately I have been unable to do that.  My best excuse is that too much as been going on - both good and bad.  I have felt a bit scattered and pulled in many different directions.  From the end of school (one predictably and one unexpectedly), some major success in potty training, to concerns about one of my other sons and concerns about how hormones aren't helping one bit when things are tough.  It's been the cliche roller coaster ride as is typical of our life but, lately, I have been less grounded and able to maintain my own perspective and balance. 

Meanwhile, I have been reading a variety of books and articles, pondering over "grief bursts", agonizing over well-portrayed Asperger's in books such as Jodi Picoult's House Rules, and feeling defensive about my concerns regarding one of our sons who we thought was totally neurotypical.  Meanwhile, life has been going on.  Summer has arrived.  My daily phone calls with my family keep me updated on my aging family back in Texas.  I often find myself missing my many friends around the globe.  I am fortunate to have connected with a great group of gals called the Big MAKS (mothers of autistic kids) who rock and without whom I would feel significantly more isolated.  Despite the good and partly due to the bad, I have found myself in a quandary as I search for strength when I sometimes feel I have none.  I search for the meaning of this crazy life I live without the benefit of a faith to ground me.  I have turned inward as I strive to find that balance I need, the perspective I need to keep going even when the truth of my son's disorder is shoved in my face. 

There are times I simply don't know how to keep going but I do.  I have learned to wait it out until I have a chance to get away.  I wait for a healthy perspective to overpower the negative one.  If only it could happen quicker sometimes.

Tonight, after I returned from working out at the gym (my therapy!), I was greeted by my son.  As I struggled to unload my bag while he approached me eagerly, he grabbed my hand and said, "I'll always be by your side."  Being the true, darling, little Aspie that he is, he really meant that and we struggled to get down the stairs with him next to me as he held my hand.  I finally had to tell him that he could always be by my side without actually holding my hand or walking next to me.  I couldn't help but be amused and warmed by his literalness and his sweetness.  The truth is, he will always be at my side in one way or another and, even when things are difficult, I know that I have been blessed.
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