Month: June 2015

I have been in a “poor Roger” and “poor me” mood as of late.  Yes, things are difficult.  Yes, I want to run away some days.  Yes, I wish the circumstances were different.  However, I do not want to pity myself…or have you pity me…or have you say what a fantastic parent I am doing all this for my son.  Who would not do this for their child?  Am I a good mom because my son has autism?

I have not blogged the past few days and was not planning to blog today.  But, I wanted to state the above and not have anyone concerned about my absence from the “blogosphere”. I think I need to take a vacation from autism.  I know that is impossible, but I do not feel like dwelling on it at the present time.  I dwell enough in my head that I do not want to blog about it and burden you too!

Therefore, my hiatus shall continue til I change my mind (which could be next month or the next hour!)…

This week, Roger had 1 1/4 therapy sessions.  His last session was Tuesday morning.  I received notice on Wednesday that his interventionist will be changed.  His program manager set an appointment to discuss this with me Thursday morning.  Thursday morning the second bomb was dropped — my program manager will be changed as well.  There was no additional information:  when the new manager and interventionist would begin, what his schedule would be, perhaps there’d be a sub in the meantime…Roger was very upset when she left.  I think he expected her to play with him (as she sometimes does his therapy).  I feel terrible that he is having a gap in services.  I love to keep him scheduled.  We both need it dearly.

This morning we got the answers:  Roger will be on vacation from PIP therapy next week and his new interventionist will begin June 18th.  I will meet the new program manager next Wednesday with Carley.  Finally, his schedule will be inconsistent:  M/W/Th:  8:30 sessions and T/F 10:45 sessions.  The Tuesday/Friday sessions will be painful for him, since he awakes at 5:30.  This means juggling around the babysitter’s schedule too.  Tuesday and Fridays she will be working 7:45 am – 10:45 am.  I am sure she is thrilled by the early morning hours!

I hope it is all for the best…Time will tell.

I feel people disregard that fact that I work because I am a WAHM  (work-at-home-mom).  Also, I feel, as a mother, I also get disregarded.  Roger’s interventionist arrives late for therapy sessions, I receive texts asking if I can make last-minute rearrangements for the sitter’s schedule, my lack of sleep is not as important as someone who works outside of the home.  I do not get to sleep during Roger’s nap time, I have to work.

There are times that I “put my foot down”, but usually feel guilty about it afterwards.  Yesterday, I sent an e-mail to Roger’s program manager complaining about his interventionist’s constant tardiness.  Normally, I would feel badly about such an e-mail.  However, I just feel more enraged.  I have to admit I do not feel connected to his interventionist the way I was with his first interventionist.  I could take or leave her.  She is nice, but a tad flaky and very high energy which seems to rile up Roger.  His first interventionist was very calm and that seemed to rub off on Roger, at least during session time.

Currently, I am really wanting a break.  No, I don’t want to grab coffee outside of the house or go to a movie. I would love just to pull the sheets over my head and do nothing for an entire day.  How can I accomplish this goal of mine?  If I do, maybe I won’t be quite as pissed at the world!  In the meantime, watch out for me…

I cannot catch up on sleep.  I wake up so tired and just get more tired as the day continues.

Roger is on the same path.  He wakes up at 5:30 and cannot be talked into falling back to sleep.  Then, he just yawns and yawns and gets very cranky and irritable for his therapy session and crashes with the babysitter.  How can we break this cycle and get the sleep we so desperately need?  *Any advice would be appreciated!*

Besides going through the day like the walking dead, I do try to keep our day scheduled and filled with a similar routine.  I am not getting used to feeling sleep deprived.  Is Roger?  It would be one thing if he was still happy-go-lucky then we could accept that he only needs that much sleep.  However, this is not the case.  It makes both of our days more emotional, stressful, and long!

I wish the next cup of coffee will successfully wake me up.  I am truly doubtful.

Klutziness is a family trait.

This Thursday, prior to my dentist appointment, I decided to stop at Safeway to pick up a few things.  However, I barely made it into the store.  I tripped over the curb leading to the store and nearly crashed into a family!  The oddest thing about tripping is while the act was occurring I was trying to figure out how to stop this catastrophic event.  Unable to do so, I did not think about how to lessen the fall — put hands out to protect face.  Instead, my forehead, chin, left hip, and inner right knee hit the pavement.  I rolled over and kept my face covered until I was courageous enough to unmask myself — both out of embarrassment and fear of a bloody face.  I was helped up by the woman I almost ran over and noticed quite a few people looking on.  I kept apologizing…for what, I do not know.  I kept stating how embarrassed I was also.  It is strange what comes out of your mouth when you do not put a filter on yourself.  I think the apologies and stated embarrassment continued for five minutes or so.

I grabbed a shopping cart while holding back tears and tried to go shopping.  However, the tears did come and my body started shaking.   I could not stop either from happening.  In addition, the pain started creeping in.  I decided to leave the cart in the store and get to the car as quickly as I could without tripping again.

Once in the car, I knew I could not drive.  I looked in the mirror and was amazed you could not see anything — a little bump on the forehead and chin.  I was aching…my head and chin throbbing…and the shakes continued.  I called my mom and Rob before I tried to head home.  I got home quickly and remained in the car for a few minutes — for fear of Roger accidentally hurting me.  But, the heat drove me out of the car.  I got in the house and bee-lined to the bedroom.

Two days have passed and the pain remains.  It actually feels a bit worse.  The majority of my pain is in my neck and upper back, my left arm – which must have hit the ground or twisted or something, my left hip, and my abs — as if I did crunches or something.  I am hoping it feels better by Monday.  If not, I guess I may have to go to the doctor (although our day is pretty packed already).

C’mon body, fix yourself!

The past few days have been extremely stressful.

Rob and I are excited to have my parents here in Chico.  However, Roger is not so keen on the idea.  He has been crying off and on since they arrived early Tuesday afternoon.  I thought it would cease by now.  It is starting to make my parents feel badly, especially my mother whom he seems to have a more adverse reaction to.  The perpetual meltdowns are exhausting all of us!

Besides the exhaustion, I am unable to do anything that requires me to leave the room that Roger is in.  It is making every day little tasks turn into monumental events:  laundry, dishes, going to the bathroom, etc. This is causing more stress and exhaustion.  My body feels incredibly tense head-to-toe.  Plus, my energy is gone and the yawning begins at 6 am and ends at 10 pm (or whenever I can actually fall asleep).

The past week has been incredibly overwhelming for Roger (and the rest of us).  Thursday night was the Support Group, Friday was the Fair, and Saturday we went away to Ashland.  Tuesday, we tried to get Roger back on routine, but my parents arrived that afternoon — upsetting his routine and his environment.  I feel so badly for him, for my parents, his sitter, and for my husband and I.

I have to admit I feel the most sorrow for Roger and myself — the two of us who have to deal with his meltdowns the most frequently!

After weeks of looking in the mailbox in anticipation, I finally received Roger’s ADOS Report today.  I grabbed it before putting Roger in the car for his M/W Autism Playgroup at the Parent Infant Program.

Once settled into PIP, I opened what appeared to be quite a lengthy report by the feel of the envelope.  I quickly realized more than half of the items were his previous reports and questionnaires we had filled out prior to the ADOS.  Then, I scanned the report — namely for the infamous score.  Roger’s score in the communication section was 4 (autism cutoff = 4; autism spectrum cutoff = 2).   His score for the reciprocal social interaction was 13 (autism cutoff = 7; autism spectrum cutoff = 4).  His total score of 17 falls in the classic autism range (autism cutoff = 12; autism spectrum cutoff = 7).  I guess I could change the subtitle of this blog from “Our journey into the autism spectrum” to plain old “Our journey into autism”.  It was a good thing to open at the playgroup because there were other parents there going through the same thing.  We joked about how well Roger did on his test!  And a friend told us about her experience at her son’s ADOS and how he displayed classic autistic behaviors that she had never seen him do in any other setting.  We joked about how amazingly well he did and how good his “grade” will be.

Joking aside, it still saddens me to get these reports.  I knew what it was going to say (not specifically, but in the ballpark) and it still affects me so!  Why is that?  I tried reading the report more thoroughly, but ended up scanning it for awful remarks, but did not see any.  His first evaluation at PIP remains the most cynical….well, besides his OT evaluation.

Later this evening, I shall try to read the report again front to back, not missing any words.  Perhaps a glass of wine will accompany me…or a seven-layer fudge cake?

Well, our Memorial Day / 5th anniversary weekend was memorable.

It began Friday evening when we decided to take Roger to the Silver Dollar Fair.  I was excited to see his reaction to the animals and lights and the whole hub-bub.  When we entered the fair, we immediately bumped into Roger’s sitter.  You would think he had never seen her or, even more precise, that he did not see her at all.  She excitedly said “Hi” and tried to get Roger’s attention, but he looked through her.  This demeanor pretty much remained at the fair.  When we entered the bunny room, where Roger even had the opportunity to pet a rabbit, he kept his eyes on the fan and we had to pressure him to quickly glance at the bunnies.  I have never seen a child ignore animals so much.  We can even have people bring their pets up to us and let us pet them.  I end up being the only one who pets the animal while Roger looks past it or through it.

Saturday, we left for Ashland, Oregon.  The drive was beautiful.  Roger napped for a little over an hour on the drive and was pretty well behaved the remainder of the drive.  Our visit was very low-key:  walks downtown and to the park, a drive to the winery, eating out…However, the change in routine and scenery really must have upset Roger’s system.  He had meltdowns almost the entire weekend.  It was absolutely exhausting.  The best day was Monday when he slept the majority of the ride home and was thrilled to be back at home.

I think we have decided to put a respite on weekends away with Roger.  It is too difficult for him to handle, which makes it really miserable for us.  Poor baby (and poor hubby and poor me)!

Well, last night was the second support group meeting and attendance was up!  Instead of two (Rob and I), it shot up to four (another couple).  That might not sound earth-shattering to you.  However, if the numbers keeps doubling each meeting…you do the math!

Actually, it was really nice being able to talk about parenthood with another couple in a similar situation.  Our sons’ first six months mirrored each other.  We discussed the difficulty, the depression, the questioning, the endless cries that could not be soothed, the difficulty getting our children to sleep, and the hatred of the baby swing!  The continuing issues with eating, the sensory integration issues, the autism diagnosis.  Although that may not sound like “happy” conversational topics, it was always nice to see each other looking at our kids with smiles on our faces at what they are doing and not dwelling on what they are not doing.

The only downside of the meeting was Roger’s reaction to the scenario. He did not have a meltdown or cry or make any sort of fuss.  Instead, overwhelmed by all the new stimulation, Roger completely shut down and went into his own world.  My husband showed up after we did and Roger did not acknowledge him at all.  I would physically bring Roger up to his father and he would not glance at him, acknowledge him, or react in any way.  After several attempts, I noticed he did not even seem to “see” me or anyone else in the room.  He did, at the beginning, stroll around looking at different toys and objects (especially the lights and fans).  Eventually, he just sat by a tricycle and played with the wheels.  Nothing could tear him away.

If not for the conversation, I would have been quite depressed.  Rob actually said, after the meeting, how hurt he was that Roger did not even care he was there.  Today, he has been going in and out of his own world.  He does not want to do what is asked of him, but does not seem to know what he wants to do either.  We have been told there will be ups and downs, progression and regression.

The past few weeks have been fantastic, so we may be having a few “not-so-fantastic” days.

Tonight marks the second ASD (Autism Spectrum Disorder) Parent Support Group that I began last month with the help of Rowell Family Empowerment Center and the ARC of Butte County.

The first group was very “intimate” with me, Rob and Roger.  I am hoping tonight’s outcome will be slightly better.  I am going to try to take it in stride and keep my sense of humor.  Otherwise, I will feel my effort has been wasted.  However, I have had the notion of, perhaps, attempting a more laid-back setting for June.  I would like to have a small meeting in my home or in the yard.  Although the ARC is very helpful providing food and a space, the room is a formal meeting room and does not seem like such a friendly place to chat.  In the past, I have attended support groups for my own recovery (eating disorders) and I have never been in such a formal setting.  I think a couch/floor/music provides more relaxation which would lead to more openness (as opposed to a round table with upright chairs).

Tomorrow, I will update you on the outcome and if I will attempt try number 3.

Today, my parents packed up the last of their items and are driving to Chico.  They are making what they are calling “their final move”.  I have heard this before, so you never know what the future holds.  However, I am so excited to be living in the same city as my parents!  It has been a decade.

Growing up, I was so close to them.  I never though I could leave their house.  I hesitated going away to college and opted for a commuter college instead.  Eventually, I had to get out of the hell that is South Florida.  Since that first move to Denver, we have lived together for short periods of time. And when they were living “nearby”, it was never very close.  Now, they will be living a 10 minute drive away.  It seems surreal.

I am so thrilled Roger will get to know his grandparents again.  They were out here for 2 months last Spring and it was so difficult saying good-bye.  Now, we won’t have to….they will be here for his birthday, they will be here for holidays, they will be here for his sessions.  They will be HERE!

I am also expecting some tension as my husband will have to adjust to having his in-laws living in town.  (I don’t know what I’d do if his parents moved to town.)  Plus, we all know that our personalities change a bit around our parents and we have to a tendency to regress to childhood.  I will do my best not to let that happen.  Although when I am sick, I will be so happy to have my mommy help me!

As I am typing and eagerly awaiting their arrival sometime the end of next week, I am grinning ear to ear.  I love my mommy and daddy!

Frustration is a key word in most of our days.  I easily frustrate and get pissed off.  My husband easily frustrates and yells over the smallest upsets.  SO, it is not a huge shock that Roger inherited our frustration gene.

Today’s therapy session was an “anger management”/”frustration management” session.  At one point, Roger’s interventionist said, “He is going to have to stop this crying”.  He would cry/whine anytime he had to do something he did not want to do.  I guess the kicker was that he did not feel like doing anything during his session.  That equals almost two hours of whining.  There were moments of quiet and joy, but they were few and far between.

Even before his session began, Roger tried to get his “spice bottle” from his play kitchen into a cup.  He got one to fit but a second one would not.  The crying/throwing/whining fit began.  And, after the session, the whininess continued.  He likes two tv shows but he calls them the same thing.  When I put the wrong one on, the crying/headbanging meltdown began.

I feel a lot of his frustration would be non-existent if he had more words to communicate with.  He mistakenly signs “more” instead of “all done”.  He says “babba babba” for Pocoyo now and not just Yo Gabba Gabba!  He has a vision of how he wants things to be but his motor skills will not enable him to do it. On top of that, he usually dislikes asking for help.  All of that creates one huge ball of frustration.

Despite all that, I love the whiny men in my life!

So thankful that tomorrow is the weekend!  It has felt like such a long week with mine and Roger’s terrible allergies, lack of sleep and endless teething of two-year molars!  I was at my rope’s end yesterday when Roger took a 20  minute nap and decided that was that.  I was hoping to nap with him, but he would not let me.  Instead, we went for a walk, watched some tv, and, eventually, went to his occupational therapy session.

His session went well.  The other boy who shares his session time with another OT and has a hard time transitioning spent the entire 45 minutes, yelling, crying, and kicking.  While Roger’s Occupational Therapist and I were at points distracted by his ear-piercing yells, Roger was only distracted by the toys being used to try to engage the other boy.  My lil man went far enough to crawl over to try and play with all the toys (numerous times) without looking, acknowledging, or seemingly hearing the other boy.  His therapist said, “That is really interesting to watch” and we discussed how poor Roger did on the social section of his ADOS and, obviously, how reflective this was of his diagnosis.

Fortunately, this is the last joint-session.  Roger did well at his session, but I think he will do much better when it is just him alone.  Unfortunately, his session is being switched to Wednesday afternoons.  That means his Wednesday schedule will look like this:

8:30 am – 10:30 am Early Intervention Session
11:00 am – 12:00 pm  Autism Playgroup
Nap (hopefully)
3:00 pm – 3:45 pm Occupational Therapy

That’s quite a busy day for a 21 month old (and his mother)!

Tomorrow, Rob and I have a much-needed date night.  TGIF!

It is amazing what a little Sudafed and a little relaxation (via Nurse Jackie) can do to a body, mind, and emotional state.  I feel great this afternoon.  And, let me put it this way, having terrible allergies since a child (and non-seasonal/full-year allergies, at that) makes you appreciate when you actually do feel pretty good!

Today was a rather laid back day, overall.  We took my husband to work in the morning, bought a few things at Target, danced around the living room to the 3rd volume of Yo Gabba Gabba (yes, we have all three!).  Then, we had playgroup.  As per usual, Roger had a fantastic time in playgroup, without actually interacting with the other two kids.  His favorite part of playgroup was the parachute toy.  He loved to spin underneath it and to lay and kick on top of it.  He was all smiles!

Fortunately, he fell asleep on the way home from playgroup — the past month Roger has only taken naps that have begun either in the car or in the stroller.  It is easier than putting up a fight and ending in an awful headbanging session.  After his nap, I made him a grilled cheese and fruit salad (watermelon, grapes and strawberries).  Again, we listened to the CD and danced around the living room until his afternoon sitter arrived and work began again for me.

What a fantastic day with my lil man!

First off, my son’s autism diagnosis is a formal diagnosis.  It is not one person’s uneducated opinion.  My son first had three evaluations before being placed in the Extended Early Intervention Program for children at-risk for autism.  He receives therapy five days a week.  His occupational therapist also suggested an ADOS in her initial evaluation.  Plus, the ADOS team consisted of three professionals who had not met Roger and his “team” at the Parent Infant Program.  That means there were five people educated in autism that all agreed on my son’s diagnosis.

Secondly, my husband and I have noticed something different about our son since bringing him home from the hospital — even in the hospital.  He could never be soothed.  For nearly the first six months of his life, he could not be soothed or distracted besides being fed and his, occasional, sleep.  We had thoughts that we were not “natural” parents because we could not make our lil boy happy.

Thirdly, there are many, many things we see on a daily basis and have to deal with on a daily basis that confirms the diagnosis.  I do not need to make a huge list (which it would be) to convince you.

Finally, especially since the majority of our friends and family have not seen Roger in over a year, how do they know how he is?  They do not know our son.  They cannot make blanket judgements.  I am sorry if it is too hard for you to deal with, but I have come to terms that my son has autism.

Yes, my son has autism and I love him dearly.  I love him no different than if he did not have autism.  He is a smart, talented little man.  He just processes the world a little differently than you and I and may need some extra help.  And, if you cannot comprehend this, perhaps you need some extra help too!

Happy Mother’s Day to all of you as I drink my “stress-relief” tea from my brand-new, oversized yellow kewpie doll mug!  Despite horrible allergies, today has been a fantastic day!

Our son woke at 5:40 and, as requested, Rob let me stay in bed while he took Roger out of the room.  However, as a half-hour passed I could hear Roger screaming because I was not out there, as I normally am.  He is fond of routine.

My husband made a delicious breakfast of french bread french toast, blueberries, strawberries, turkey bacon, and veggie sausage.  I had taken a Benadryl and warned him that I may fall asleep shortly.  However, he still insisted on having mimosas (since we made sure to have the ingredients for them).  Well, that did the trick.  Around 9 am I went to the bedroom.

At noon, I emerged feeling much, much better!  Shhh…I actually did some chores — laundry, put away dishes, wiped down the stove top and kitchen table, put away Roger’s toys from the morning, and made myself this cup of tea.

Due to the high pollen level outdoors, I am not sure if I will get out of the house today.  If I do, we may go to Barnes & Nobles and look around…and, possibly, have dinner out?!

Dinner truly will depend on our son. He does not do well in places too crowded and, obviously, too slow moving.  He usually says “All done” within minutes of being seated!

I hope your day is as laid back as mine!

Well, despite another sleepless night (due to Roger’s recent bout of fighting sleep), I woke up in a better state of mind.  I think my way of coping is, again, to evolve into a super advocate.

Today, I have advertised the ASD Parent Support in various sections of Craigslist, in the CNR, and on the Rowell Family Empowerment Center’s website.  I am hoping this will get the word out and create a better turnout for our May Support Group Meeting:  an attendance of 1 would be better than April’s attendance!

I am glad we had the ADOS because it once again helped me to get a new perspective on our home situation.  Today I have noticed how much of my interaction with my son is forced by me.  I intrude in all of his activities:  sometimes he leaves the room and the toy/book he was playing with, sometimes he lets me be in his space but still does not interact, and sometimes he enjoys my intrusion and we play together!  The first two always make me feel badly about my mothering.  However, I do have to remember to not take it personally.

Roger is the same amazing boy today as he was on Wednesday, prior to the diagnosis.  He is still doing the same behaviors and activities as he was doing on Wednesday.  Now, we only have the confirmation of a diagnosis.

It cannot be said enough how much I value the people in my life — all those who are supportive and have reached out in the past few days.  Thanks to all of you for everything you have done!

Today is the day I will always remember:  the day Roger officially got diagnosed with autism.  I gasped when they told us his diagnosis and the “team” was a bit shaken – worried about my reaction.  I immediately felt a lump in my throat and had the feeling like I was going to throw up (which I did first thing when I got home).

I thought knowing the diagnosis would give me peace of mind.  However, it killed my “hope” that he was not autistic.  Secondly, I think we downplayed the whole thing thinking the worst he may be diagnosed with was PPD-NOS.  However, he was firmly diagnosed as having AUTISM.  According to the DSM-IV, you need to meet the following:  2 criteria in social interaction, 1 criteria in communication, and 1 criteria in behavior.  He met 3 of 4 in social interaction (with the 4th being “some” not none), 2 of 4 in communication (with 1 being N/A due to his age and 1 being “some” not none), and 2 of 4 in behavior (with 1 being “some” and 1 being “none”).  That makes it a concrete diagnosis, not a “borderline” diagnosis.

It is funny because when I went over the modules with his Program Manager, I felt he would score worst in behaviors and was more optimistic about the social module.  I guess that is what you get when looking at this subjectively.

This is a lot to digest.  I cannot really express how I feel.  I do not really know how I feel.  All I know is how much I love my husband, my parents, and, most of all, my beautiful son!

So, the countdown continues with 17 hours and 42 minutes remaining until the ADOS begins.  This morning my son’s Program Manager went over what to expect at the ADOS (especially at Chico State University – how the room is set up).  There will be no table to “prompt” him to attend, as there is during his session.  Instead, it will be more laid out as an unstructured playroom.  This concerns me.  The lil man has a tendency to quickly move from one toy to the next when not made to sit and attend.

The ADOS is broken down into three sections:  social, communication, and behaviors.  We went over what types of questions to expect in each session.  The first two sections (social and communication) are much more difficult to pinpoint how he will score.  We know he has language delays, but do not know how extreme his score will be.  The social section I am very confused over — he may have eye contact, he may interact, or he may be in his own world.  The third section is much more clear-cut.  He shows all the “red flags” in this section.  As has happened in the past, I now feel more dismal than I have in the weeks leading up to the ADOS.

Was I wearing rose-colored glasses?  Should I continue wearing them until I hear the diagnosis?  Maybe I will need to have a drink or two later tonight?  I do not know how I shall spend the next 3/4 of a  day!

Yes, I am full of anxiety…I am counting down the hours (and minutes and seconds, thanks to the time and date website) to our son’s ADOS.  Currently, as I began this blog, there are 49 hours until the ADOS begins.  I have been sleeping not very soundly the past few days and I can only imagine the next two nights of sleep will even be worse.  I am hoping to have a big sigh of relief once the ADOS actually begins.   However, I can only imagine what that hour deliberation will be like when they compile his scores and decide my son’s diagnosis.  That would be a fun-filled hour, eh?  Maybe I will have to get a quick drink!

In the meantime, I will distract myself with work, bills, laundry, and planning for the lil man’s second birthday.

I wish I was one to meditate….

As the date of his ADOS nears, my husband and I keep reflecting on how our son was a few months ago prior to therapy and how he is now.  The change is really amazing in 3 short months!  I think if you look at things daily, you would miss the change.  However, when you make the comparison, it truly is more than I could have hoped for!

Our son can attend at a table for a period of time.  He can give eye contact to continue playing.  He knows and uses several signs.  He has actually started noticing and looking at other children at the park.  He sometimes plays with his 3-piece puzzle without being prompted to do so.  He imitates words now.  He helps put away his things.  He, literally, says “bye” to everyone.  He is excited to see Daddy and Mommy.

Again, an average person would think:  of course a 21 month old could do all of those things….he should even be doing more.  But to us, this is so much progress in so little time.

Of course, as mentioned before, I do not think our son is autistic – socially he has advanced leaps and bounds.  However, we are curious what boy they will see that day:  the boy who can attend and interact or the boy who will just hop, hop, hop for two hours straight.  This morning at the gym’s daycare a daycare worker told me how last weekend all the lil man did for two hours was non-stop hop.  I have not seen him do this outside of our house.  This concerns me a little bit.  I am sure he will not score greatly if he only hops for the ADOS!

Time will tell…but I am guessing the wait until Thursday at 10 am will be a long one!

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!