Category: Uncategorized

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!

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!