Spinning Wheels

Our lil man is 21 months old today.  His 2nd birthday is only 3 months away!  Of course, I have already ordered and received some items for his Yo Gabba Gabba! themed birthday party.  I always must be obsessive of at least one item at a time – but usually have a lot of obsessive thoughts floating around my head!

The first week of May has been hectic and tiring.  My husband had surgery on Thursday.  He is actually much better than I imagined.  However, I am acting much worse than I would imagine.  I don’t know what it is, lack of sleep, whiny son, added stress, my high expectations of myself, but I have been quite a meany.

Our son also began his occupational therapy on Thursday afternoon.  That was pure joy (sarcasm).  It was his occupational therapist, himself, another boy 27 months old, a second occupational therapist, and the two mothers.  The entire 45 minutes was filled with screaming — screams of anger, frustration, tiredness, etc.  I think there may have been a 1-2 minute gap that neither boy was yelling and throwing a fit.  That was the most exhausting 45 minutes and I am not looking forward to the next session!  However, we may have to cancel this Thursday’s session due to our son’s ADOS.

Seeing him be so miserable in that new environment and not really being able to attend and generalize the skills he has learned thus far is making me more concerned about the ADOS.  I have no idea how he will be:  happy and attention-seeking or miserable and all over the place.  I think the mere thought of this Thursday is making me sleepy right now.  Perhaps I should try to take a short nap and try to clear my mind of all thoughts!

I am very optimistic and ready to start the new month.  April was Autism Awareness Month and I became so engrossed in all things related to autism.  I have decided to, instead, spend this month focusing on my beautiful son, my very brave husband (who will be undergoing a painful surgery this Thursday) and myself.  I want to make this month as “normal” as possible.

This morning my mother told me that she secured the moving truck for their move to Chico.   She has reserved it for May 30th.  That means my parents will be arriving here the beginning of June.  It seems completely surreal!  I am very excited for all of us.  This will be great for me — to have family support.  This will be great for the lil man — since he loves love and loves attention!  And I think it will be good for my husband, since his parents tend to be more selfish and self-centered than mine.  I think he will finally feel the family support that I grew up with!

Next Thursday the 10th is the date of the ADOS.  It no longer feels like this overwhelming issue.  However, I know it is, potentially, life changing, but, again, I am facing it optimistically.  Our son has made leaps and bounds the past few weeks and I think he is an amazing boy who has a huge personality and is brilliant (despite his lack or slower development of language/cognitive skills).  I may be setting myself up for disappointment, but I am preferring to remain happy now.

Life is good!

Yesterday and today I have decided to stay home while my husband takes our son to the gym…for some alone time to listen to music, get things done around the house, dye my hair…ya know, things you usually take for granted!

I have also decided to separate myself, for a bit, from the “world of autism”.  My son is having his ADOS either this Thursday or next Thursday.  I may be in denial, but I do not think he will have an autism diagnosis.  I know he has Sensory Processing Disorder, but I think that may be it — and that is enough to deal with in and of itself.  In the meantime, I just want to go about our everyday like a “normal” family.  Sure, he still has his Monday-Friday intervention sessions, his Monday/Wednesday at-risk playgroup, and his new Thursday OT session.  That is surely enough for me that I no longer need to add anything else to our days (relating to autism).  If he is diagnosed, we will deal with it from there.  But for now, I want to just have fun, not analyze every movement, not “intrude” on my son to get him to interact.

I just want to be laid back for the next couple of weeks.  This is especially the case since my husband is having surgery on Thursday.  We have decided (well, I have decided) to opt out of our “More than Words” class.  So, that means Tuesday night will be a date night for us — a nice dinner alone!  It is long overdue.

Our weekly schedule is already so packed that I need a break from anymore extraneous, un-fun activities!  We will see how long I feel this way.  Perhaps the zero turnout at my support group has something to do with it.

Whatever the cause, I am looking forward to the break!

Well, one thing is truly consistent in Chico:  unreliability.  We received four RSVPs for the new ASD Parent Support Group – that would have meant 6 additional adults besides my husband and me.  However, no one actually showed up for the group.  That stunned me as I received one of the RSVPs a few hours before the group was to begin!

We stayed at the ARC until 7:15 (dinner was at 5:30 and the group was supposed to start at 6 pm).  We thought that was plenty of time for people arriving late from work.  I truly don’t know what else we could have done to spread the news.  April is Autism Awareness Month and I attended all the functions to hand-out fliers to families with autism.  Around 125 fliers were handed out.  Next month, there will not be an opportunity like this one.

How frustrating!?!  I shook hands and had many discussions with parents during the autism walk who truly seemed interested.  I know life gets busy, but not one attendee?!

At least, our son had a good time playing at ARC for those 2 hours.  He had his first bouncy house experience, so it was not a total bust!

In other news, it seems like there was a cancellation for an ADOS for May 10th.  That will make life much easier since my husband has surgery on the currently scheduled ADOS day, May 3rd.  Now, I just have to get confirmation that we have that new date.

Well, the inevitable happened.  There was a cancellation for an ADOS and we would be lucky enough to get the spot.  It would be next week…..BUT, my husband is having surgery that day.  Is this some cruel joke? We are completely open ANY DAY OF THE YEAR, except May 3rd!

Our friends once joked that we conjure up these circumstances.  We once went to a Zizek talk at the NYPL.  We had fantastic seats, until the lady with the largest hairdo sat in front of us.  This blocked my entire view during the entire discussion (and I believe my husband’s view as well).  Did we conjure this up?  We always had the worst experiences in the city going to movies.  It was inevitable the tallest person in the world would sit in front of me — even if there were only a few people in the theater.  Being 5’2″, this has always a concern of mine.  But the lady at Zizek was out of this world.  It was like a beehive on her head…or actually, more tree like, since it branched out on the sides as well, blocking a 3 foot radius!

So, did we conjure up a cancellation for an ADOS on the one day that we could not attend?  Perhaps…or maybe it’s just bad luck…or a silly coincidence… Whatever it is, it plain sucks!  My patience is tested once again…

I am once again beyond exhausted.  I MUST nap when the lil man naps today.  And, hopefully, my self-defeating thoughts will not keep me awake.

I keep wondering how I can pull off working 20 hours a week when I only have a sitter about 8 hours a week?…how/when can I read all the chapters for the “More than Words” class under the same restraints?…. how can I prepare for the first support group meeting under the same time restraints?…especially when all I want to do right now is sleep!?

I really wish I didn’t extend myself so far.  I want to be “supermom” but am now thinking of giving up some of these tasks.  But, then I keep thinking “only 6 more classes”.  I do not have to be perfect, just do what I can.  However, I am used to being as perfect as I can at any task I undertake.  I am not comfortable otherwise.

I have not had time to keep up a simple blog.  I have not had time to watch stupid tv shows.  I have not had time to relax and take care of myself.

Can someone please add more hours to the day?  More days in a week?  Something?

It’s been so long since I blogged, that I did not remember what my last post was about.  However, when I saw it, I laughed. Obviously, someone/something out there was warning me not to add anything else to my plate.  Not listening, they decided to strike me ill!

I am still fighting the ickiness (mild pneumonia) but feel infinitely better than I have since last Sunday.  I knew I was sicker than usual because I am still able to obsess over things that need to be done, do dishes and laundry, keep the house okay looking while still feeling terrible.  This time, I could care less how anything looked.  Well, I did care, but I could not get myself up to do a single task.  And, my obsessive thoughts, especially about our son’s ADOS, were nowhere to be found.  In that sense, it was a nice vacation from thinking.  I did not even obsess about work (or not being able to work).  I think the only thing I obsessed about was sleep and rest!

I do feel bad about not being a healthy mother for my son last week.  He watched way too much tv and was unable to enjoy the wonderful weather outside.  However, by taking it really easy last week, I am hoping this upcoming week I can do more with him.

The first sign I am starting to recover – thoughts are keeping me awake from a potential nap.  I told myself I would blog while my hubby and son were at the gym.

But now I really do feel sleepy and am hoping to close my eyes for a few minutes before the boys come home…

Yesterday I attended the Autism Awareness Faire at the Rose Scott School.  I handed out fliers for my upcoming support group and for Rowell Family Empowerment Center.  While I was there, I was able to get a tour of the school and speak with the woman in charge of the school.

I have been researching alternative schools in case our son is diagnosed with Autism or on the spectrum or if his SPD is still so bad that he would not be able to sit still for a traditional school setting.  Rose Scott School is the only school in Chico that fits that bill.  It is a very small school.  I think there are less than 8 students in the 1st-5th grade class, about 8 in the middle school class, and less in the high school class.

Since the school is so small, I inquired if there was a waiting list to ensure my 20 month old son would be able to attend once he hits school age.  This brought about an alternative conversation.  They would love to start a preschool there as well for children 3-5 (Kindergarten is optional in CA).  There are a couple of obstacles:  1.  they would like to be assured a certain number of students would attend and 2. the requirements for starting a preschool are much more difficult in CA than starting an elementary, middle or high school.  Therefore, they would like a Parent Steering Committee to help be a liaison for information from the Department of Education and the Baptist School they rent space from.  Of course, I am seen as the over-eager parent who would be perfect for such a task.

And, of course, I already start thinking of how to put this plan in action!  I spoke with the parent whose son attends the play group with our lil man.  She, too, is incredibly busy, but very interested in helping.  We both decided we needed to clear our plate of one thing before adding this.  Since we are both in the Hanen Program’s “More than Words” class, we have decided to put it “on hold” til the class is over at the end of May.

Of course, in the meantime, I shall still obsess!

As a parent of a child who is at-risk, one of the hardest jobs is reading the reports of evaluations.  They always seem so much harsher than what you see as reality.  You read them and think, “this is not my child; they don’t know him at all”.  On the other hand, it is mind-opening to see things from an outsider’s perspective.

We received our lil man’s report of his sensory evaluation on Friday.  I have reread it several times.  This time I do recognize my son:   cannot attend to a task; most desired tasks are played with 30-60 seconds.  However, the numbers are what hit me hard.  The Occupational Therapist said she would have to score him low in his motor assessment because she could not truly test him since he does not stay still to complete any tasks.  The score she gave him was 12%!   Could you imagine scoring 12% on a test!?!?!?  That is ungodly low.  He did complete some tasks as she wrote in the report.  What would his score have been if he did not complete those tasks?

Needlesstosay, he qualifies for OT starting in May.  I do, though, harbor feelings of upset towards the therapist he will be working with for writing such a damning report!

Geez, I cannot wait to see his ADOS score and read that evaluation!  I want this all over with ASAP.

The reports are eating me up….And, in return, I am eating up everything in sight!

We have a time frame for our son’s ADOS.  We are on the waiting list for a highly demanded doctor in Chico, Lisa Benaron.  The wait is very long.  The first availability is September of this year — 5 months away.  Our case manager is trying to pinpoint an exact date and trying to push it a little sooner.  In addition, she is requesting they make a Cancellation List and add our lil man to that list.

Hopefully, we will hear back regarding both sooner than later.

I am still grieving over the SPD diagnosis.  It is odd how an expert confirmation of something you whole-heartedly suspected still causes a mourning process.  I cannot imagine what I would feel if he is diagnosed with being on the autism spectrum.

I was hoping to have an ADOS prior to my parents moving to Chico.  It may sound silly, but I think it would be easier if we knew and they knew where we stand and what  the experts have to say.  Currently, the lil man is not reaching his developmental milestones due to speech delays and other developmental issues.  I am afraid my parents may dismiss what they see with their grandson as “normal” toddler stuff, although we have had confirmation of him displaying several “red-flags”.

We could change the forum of the ADOS to the MIND Institute.  However, I have heard they are more “clinical”.  Their waiting list would give us a date in July.  Is it worth the change? What should we do? The case manager is persuading me to keep Lisa Benaron.  I am not sure if she is a.  looking out for our best interest  or b. does not want to have to go and plead our case again in front of the review board to change venue.

These thoughts kept me up last night and are still plaguing me.  It stinks being so obsessive!

Sensory Processing Disorder.  Our son has Sensory Processing Disorder.  I knew he did, but the Occupational Therapist confirmed it.  Just a diagnosis of a disorder with no cure a la ASD.

I feel so bad for our lil man.  He cannot regulate himself.  He cannot soothe himself.  His body’s serotonin is not regulating his dopamine levels effectively.  He needs us to help him regulate them – via deep pressure massage, distinct activities, weighted toys/blankets, etc.  I will really get a more precise idea when we start therapy in May.  This explains how swaddling was his only comfort as a baby.  He could not be soothed by being held or any of our other efforts.

Why is life dealing our lil man such a harder hand?  I know some kids have it even tougher, but I feel bad that he cannot even make him self “feel” normal without headbanging or spinning wheels or some other self-regulating motion.  I do not want him to be an outcast around other children (or around other children’s parents).

I have so much more to say on this topic, but I have declared our son’s nap time, my nap time too since I start class tonight.

Today has been a very good day, thus far.

Yesterday, I e-mailed our son’s program manager at Parent Infant Group regarding his progress with his new interventionist vs. his previous interventionist.  She called first thing this morning and we discussed it briefly and set a time to discuss it further this afternoon.  That phone call was followed by a session and a play group.  Both went well, except the walk during break time.  The lil man decided to sit more than walk.  He would take 1-2 steps and go down, over and over again.  I think the 1.75 block walk took about 30 minutes!

The lil man fell asleep on the way home from play group and I was able to do some work.  He woke up early enough for me to have some alone time with him before his program manager came over and his new sitter.

The discussion with the program manager was very fruitful.  It unburdened me — I was able to let go of how I was feeling with the transition and the new approach. Our conversation lasted about 30 minutes or so and covered a variety of topics.  It was a well overdue conversation.

The new sitter arrived during the “meeting”.  It was good because she got to overhear a lot of what is going on with the lil man and have him check her out before leaving them alone.  However, I am now listening to the little man being quite upset.  They have been alone about 20 minutes.  He keeps crying/whining.  I hope this does not last too long.  I feel bad for the both of them!

Well, tomorrow is the OT evaluation and our first “More Than Words” class- I will fill you in on both when I get the chance!

I really do not like when people tell me that “all kids do that”.  Yes, some things our son does are reminiscent of all children – playing with pots and pans, saying “No” and doing the behavior we asked him not to do, spinning wheels.  Yes, I know kids do like to spin wheels.  However, the severity of the problem and the distinction between your “typical” child and my “neurologically diverse” child was displayed today at Safeway.

We had completed food shopping for our Passover meal.  The lil man had hurt his lip on the shopping cart handle, so I was holding him trying to soothe him.  I saw some toys I thought would interest him between the check-out and the exit.  That way, he’d be occupied while my husband waits in line.  Lo and behold, the lil man found the most fantastic toy of them all:  a dingy wheel of a powerchair shopping cart.  And not the large motorized wheels, it was an itty bitty wheel near the motorized wheel in the front of the cart.  It was higher than that motorized wheel, so he was able to spin and spin and spin it.  I kept trying to distract him with toys, but he would go back and lay face down on the floor and spin the wheel.  It was getting a little strange and was very dirty to say the least, so I decided to carry him away from the chair.  This created a meltdown that, inevitably, started with a headbang.  Since there were no hardwood floors or doors for him to knock his head into, he inadvertently banged it into my jaw/chin.  This caused him to yell even more (out of pain) and for my head to jerk back and really affect my neck.  I have a bad back/neck with a few herniated discs.  The result has been hours of back pain since the meltdown.  The lil man did not intend to hurt me, however, I am always hurt as a result.

Early intervention keeps telling me:  Occupational Therapy and ignoring the behavior will help.  We have a month til OT will start and ignoring this has gotten us nowhere.  It is quite a cycle.  There are some very good days that I think, “our son is the so-called ‘normal'” and then there are days, like today, that make me so sad and put me back into that dark place of questioning everything.

Right now, I am feeling more grounded.  The house is clean.  A second sitter has been hired.  The drawers are in order.  A huge pile is ready to be shredded.  Organization helps me focus and breath.  It is my zen…my yoga.  Now, I just have to figure out how to incorporate exercise more into my daily life — other than chasing the lil man from room to room and around the yard.

I have been worrying about the upcoming Support Group and what I should contribute (other than my own story).  The manager at Rowell told me I get $20/25 per month for supplies for the group – non-food supplies.  I am not too sure what exactly that means.  It kept me up a bit last night.  I was thinking I should buy some spiral notebooks with pockets and a packet of pens.  I will supply my e-mail address/ phone numbers for the other parents and hope they may contribute some ideas and suggestions for upcoming groups.

The other group gives out a raffle gift each meeting.  However, is that truly necessary?  Someone receive a gift for attending a support group…is the support group not enough?!  So much to think about regarding that.

I think I may also be worried about our upcoming class.  I have not been in a classroom setting for years and am worried about doing the best I can.  Can you not tell from this post that I am a perfectionist and worry-wart?

I love how I started this post being grounded and now I am working myself up.  Time to breath, watch a terrible episode of Nip/Tuck and drink some tea.

Namaste.

Among the barrage of stress I have been under, I did receive some awesome news today.  There are two families who will be attending my support group.  There are two mothers and four children.  Unfortunately, no husbands are attending yet.  I am hoping we get some husbands there.  I know my husband could use another person to talk to about this whole process.

Also, I spoke with our son’s Case Manager Monday and he will be put on this week’s or next week’s agenda for being added to the Autism Evaluation Wait List.  It can take up to 6 months for him to get an evaluation, but I am happy they are already adding him to the roster.

I wish this good news would loosen up my muscles.  It seems that stress immediately affects my body.  My neck is so stiff and sore and my back is feeling the burden.  However, the opposite does not occur.  When the phone rang with the good news, my muscles did not lose tension.

Babysitter interviews are continuing today and I am hoping this task will be checked off soon.  How many more items need to be checked off before my body does respond?!

I think one of the most difficult hurdles we have encountered thus far is finding a flexible, reliable sitter.  Our newest sitter can only watch our son a limited time on Tuesday/Thursday/Friday.  Now, I am sitter-less on Mondays and Wednesdays.  I was hoping our previous sitter would be able to watch him these days, but she can only do 2 hours each day and expects a $2 raise per hour, which is ridiculous.  I negotiated a $1 raise per hour on Tuesday nights for April and May so that we can attend the Hanen Program’s “More Than Words” class.

I woke to a text from our sitter stating that she is sick…again.  However, since she does not have a fever, I asked her to come because I have to work.  She has been sick more than half the time she has been our sitter.  I need someone with a better immune system!

Contacting sitters on craigslist before I put up another ad.  I was hoping to avoid this situation until his Occupational Therapy was set – so we would not have to change sitter schedules again.  But, alas, that is not the case!

Each passing day, the lil man has more and more tantrums and is crankier and crankier.  Are these the terrible twos because it seems like bipolar hell?!?!

This morning he woke up early and was in a good mood.  By our first meeting this morning, he was already in meltdown mode.  He was on the floor, crying, screaming, headbanging.  We made it through with lots of tears.  However, as the first meeting ended, our son’s therapist arrived for his intervention session.  This hour-long session mimicked the first meeting except with a lot more headbanging, but some happy moments too.

Finally, he got to watch Yo! Gabba Gabba after the session ended.  This is what he was asking for all morning, but could not do because of all the work he has to do.  Poor guy!

After an episode, we had our first At-Risk Play Group.  He did incredibly well.  He had a blast with his new buddy.  Each had their idiosyncrasies.  And, then, it was snack time.  Our lil man howled and kicked when they made him sit in a chair.  The headbanging followed.  The headbanging is going overboard lately.  But he did quickly calm down when food appeared.

He was quite testy on the car ride home – yelling and yelling as if the seat was causing so much pain.  And before nap time, I got to experience one more meltdown on the floor.

This is becoming so difficult.  Each day I hope he wakes in a better mood and will be less up and down.  However, each day it just seems to get worse.

UGH – please tell me this is a phase!

Well, today marks the first day of Autism Awareness Month. Yesterday, we purchased our blue lightbulb and blue lantern to “light it up” not just for April 2nd – World Autism Awareness Day – but for the whole month of April.

This morning we participated in Chico’s Walk for Autism. My husband and I distributed many flyers to parents and other organizations announcing our new ASD parent support group. I got to speak to a few mothers more in-depth who, also, needed someone to talk to regarding their children and the whole process going on. I think a couple will, hopefully, attend the group or keep in touch – since my number is on the flyer.

I am pooped and am even more exhausted when thinking about what tomorrow holds:
8 AM meeting with teacher of the speech/communication class, “More than Words”, that my husband and I will be attending
8:30 AM early intervention session
11 AM play group for at-risk toddlers
Hopefully a nap, so I can work (no sitter)

However, I am looking forward to it all. And looking forward to all of April!

I have been looking over my blog and realize how depressing I must sound.  Really, life may be difficult at times, but it is mainly very happy.  Our son has one of the biggest personalities.  He is a show-off around adults – prancing and singing and dancing.

He loves music.  He loves books.  He loves running around the house from activity to activity.  He loves Yo! Gabba Gabba – mainly for the music.  He loves spinning.  He loves the park.  He loves life!  He makes me love life so much more than I could ever imagine.

He is so amazing.  I would not trade my lil one for any other.  I love how excited he gets over DEVO’s “Girl You Want”.  His whole face lights up and he starts his dance routine.

Everyone in his programs falls in love with him – he is just so into everything!  Although he may not stay focused on anything too long, he loves exploring and trying to find out how things tick.

Talking about ticking, he also LOVES clocks.  We realized this one day when we put a clock in his playroom.  He was obsessed with looking at it and clicking his tongue.  When we had to remove it to change batteries, he had a meltdown.  When we pass a clock store, he stares.  In other stores or places, he always stops before the clock.

What an amazing mind, an amazing outlook, and an amazing boy.

We are lucky parents!

The lil man has reverted to horrible wake-ups (both in the morning and at nap time).  He screams uncontrollably and cannot be soothed.  Today, during nap time, he had a 10-15 minute screaming and headbanging session before falling back asleep.  I know he is exhausted and probably needs more sleep, but wish there was an easier way for him to fall back asleep without inflicting harm on himself.

“Occupational therapy will help” is what I keep getting told.  Is it the magic ticket?  If so, he has his evaluation on April 1oth but will not start therapy til May.  I don’t know how many more months of this I can handle.

Yesterday, during a tantrum, his hit his head on the hardwood floor and had a huge red spot on his forehead.  If I try to touch him, he usually gets more violent and flops all over the place, screaming as if I burnt his skin with my touches.

It is scary to see your child react like that.  He regulates himself by hurting himself.  And it hurts me so much seeing his actions and the pain in his face.

The lil man is still a bit under the weather.  He fell asleep on me last night while watching tv on the couch.  He slept nearly 10 1/2 hours, but it was the most restless sleep.  He would toss, turn and cry almost every half over — sometimes even more often than that.

He is in a fantastic mood this morning despite the lack of sleep.  I, on the other hand, can barely keep my eyes open.  I am so very tired from last night and the night before.  I think today I will have to nap with the lil man.  Or else, another restless night may do me in!  Yesterday’s exercise session left me sore, so maybe I should take a break anyhow.

Um, yeah, can that nap time be moved to right now???

Our lil man is under the weather yet again.  Poor guy.  He slept terribly last night and had some bouts of crying.  He woke this morning crying and was cranky all morning and through his session.  I wish he could tell me more.  Well, he can tell me “more”.  He signs “more” all the time, especially since he does not have many more words in his vocabulary.  I am hoping his afternoon nap may improve him a bit, since he does not rest up when he is under the weather.  He is still totally on the go.

I decided to exercise and work during his nap time.  I have had a tendency to lay down at some point during his nap and then I get even more tired than I was before the nap!  I am hoping staying awake and getting things done may make me feel better.

I wish I had more to add to the blog today, but I am at a loss for words.

Stay healthy!

This weekend I finally weighed myself after not doing so for some time. I was doing really well exercising and eating better before we went to NYC (in October). Since then, I have been neglectful. My weight and overall feelings of craptitude have pushed me to wanting to start eating better and exercising more from this point forward.

We renewed our membership at the gym today and it is good until December 1, 2013. I’ve also decided to try to add a night at the gym on Wednesdays, after we pick up my husband. If that all goes well, and our son is good with it, perhaps we can add Monday nights too.

I don’t want to get ahead of myself. When I do, things easily start crashing and I have to start back at square one all over again!

Here’s to trying the “healthy” thing again!

Yes, it is official.  Since I became the leader/facilitator of a support group for ASD, I decided Facebook would be one avenue to advertise and reach out for other members.  That, of course, would also mean that everyone will start inquiring about my son.

The shocking thing is that only 3 people have asked any questions.  I welcome the questions more than just idle speculation.  I know how to create scenarios in my own mind based on someone’s post.  So, I am glad a few people have reached out and asked about my son and not come to their own conclusions.

It feels like I have let go of a secret that’s been just beneath the surface, but needing air.  It feels like relief and it’s almost getting routine to say:  my son is at-risk for autism and in an early intervention program; he will not be formally diagnosed or not diagnosed with autism at the age of 2.

Now the burden of the knowledge and reaction is on other people’s shoulders.  My husband and I have already accepted our son and his behaviors.

Life is hard, but life is good and I’ve got two amazing men beside me everyday!

Well, Spread the Word: I am the facilitator of a new support group in Butte County: ASD Parent Support Group for families of children at-risk or on the autism spectrum. The first support meeting will be at ARC of Butte County on Thursday, April 26th, and funded/supported through Rowell Family Empowerment Center.

Now, the real work begins:  Community Outreach.  Handing out flyers at the Autism Walk, getting parents signed up at the Autism Awareness Faire, e-mailing flyers to organizations….and lots of talking.  I am usually someone who hates being the center of attention.  I hate speaking in front of people.  Now, that is my role as facilitator/leader of this group. I spoke to one of the leaders of the Down Syndrome Support Group and she acknowledged how show she is and how her co-parent leader is even more so.  It is amazing how necessity yields such a loud, empowered voice!

My son has given me the courage and the voice to stand tall and seek out support when needed.  It is amazing the power he  has over me.  I can be quite the couch potato and he is pushing me out of my comfort zone.

Thank you, lil man!  You are making me into a better person each and every day.

It seems our son’s go to move is headbanging.  It started out as a soothing move in bed…it progressed to being done against pillows and the couch – soft surfaces.  Slowly, it has become more frequent and more worrisome as it is involving the table, a door, the floor, the wall, etc.  How can you ignore this behavior?  How can you modify it?  Hopefully, occupational therapy can help.

Now, his whole sleep routine has become an event.  He enters the bed. Kicks the bed (while lying on his belly) and headbangs at the same time.  He stands…bounces…kicks the sides of the cribs.  Falls face first into the pillow (because I quickly move out of the way)…He has some more moves in there….And it goes on and on…sometimes for 40 minutes, sometimes for well over an hour.  I am so scared of him hurting himself, firstly, and hurting me, secondly.  If I try to scold him or move his body, he just laughs at me.  He thinks it’s all a game.  I just don’t know what to do anymore.

Does the sleep just get worse from here?

Well, yesterday I surely did feel invincible and ready to take on the world.  Supermom!  Work, Being a Mother, Facilitating a Support Group, Speech Classes, the lil man’s busy toddler schedule…I can do this!

Then, a sleepless night.  A bed routine that had our son playing in our bed/crib set up and then leading to crying hysterics til past 11 pm.  When he finally did fall asleep, the sleep was restless.  Tossing, turning, and lots of crying.  He’d want to be held. Then, he’d roll away for 10 seconds, just to roll back to be held.  He finally fell asleep soundly by 4 am and was awake by 7:15ish.  Which means, I was finally able to try and fall asleep by 4 am, but woke my husband for work at 6:30 am.  This leaves me feeling less invincible and more exhausted.

We were supposed to attend a support group tonight (as to get a feel on how to facilitate the group).  However, the lil man’s nose is running and running.  And, the daycare would be filled with down syndrome children whose immune systems are already more compromised.  Even if it’s a little cold for him, it could be much worse for them.

I feel, though, that is the beginning of a slacking Supermom.  Guilt v. Right and Wrong v. Exhaustion v. Responsibility v. the Non-Stop Brain = More exhaustion and guilt.  Amidst all this, at least that remains constant — exhaustion and guilt!

Today was much more hectic than anticipated.  I had my meeting with Rowell Family Empowerment Center regarding starting an ASD Parent Support Group.  The meeting went great, but facilitating this group may be a larger task than I anticipated.  It is very official (stipends, invoices, etc.).  I had originally anticipated a support group/play group in our living room!!!  Now, it seems I will be volunteering at the Autism Faire to get the word out on the new group.  The manger at RFEC is very excited about this group and is anticipating this leading to many great programs within Chico/Butte County.

Secondly, I decided (after nearly five years of marriage) to officially change my last name.  Friday I thought about it and saw that Social Security was very close to where I was having my meeting.  SSA was not too bad of a wait – about 20 min. from start to finish.  Lastly, I had to take my husband to the DMV because he had lost his license sometime this weekend.  It was a good push to go, since SSA said I could bring my receipt from there and go to the DMV directly to change my license (2 birds, 1 stone).  Now, the wait there was awful – well over an hour!

Upon returning home, I had a difficult time getting the lil man to nap (especially since I had been away most of the morning on these errands).  When he finally tuckered out, I had e-mails and phone calls to make regarding the name change and the support group.

Thus far, it has been quite a busy day, but quite a fulfilling day at the same time.  Hooray for me!

Another weekend, meaning another break in routine, meaning another hour long session of trying to get the lil man to take a nap!  However, if that is the only hurdle to the day, then I have already cleared that.

We went to the gym, target, and home.  My husband is currently turning in our old leased car for a new one.  The ball is in his court as to what car to get next.  (And, let me tell you, he is nervous!).  Am I that hard to please or scary – if I am not pleased?  I like to think of myself as pretty low-maintenance.  I have a feeling  my husband may disagree.  I usually lounge around the house in jeans and t-shirts and no make-up = low maintenance.  Who disagrees?

Well, I am signing off to enjoy the rest of my low-key weekend!

It seems like everyday is a bipolar day.  The daytime is always happy, fun, playful…the up in the bipolar…Every evening starts the downward slope.  The switch usually occurs after naptime. Maybe it is just having so much of the day already done and still being tired, but it seems the lil man is more fussy and whiny and I seem to get more depressed.

Currently, it is naptime, so I am still feeling accomplished and in control (of what I can be in control of).  I should savor this time before the downward turn begins!

Luckily, a fantastic friend and co-worker of mine sent me a daily journal to help keep notes on the lil man’s scheduled activities, appointments, and daily observations.  This will help a lot for myself, my husband, his “team”, and his autism evaluation.  I was going to wait to begin using it until all his therapies were underway, but I have had a change of heart and decided Monday will be Day 1.

As I state that, I just realized that Monday is my meeting with RFEC and I will not be at his entire intervention session.  However, this will be the first time I have left the house during his session.  His reaction will be important to note in the journal–as will the bipolar aspect to our days!

Thank you, my dear friend!