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Yesterday, during occupational therapy, Roger’s new therapist proclaimed that she believes the best approach for feeding therapy for Roger is inpatient treatment.  His denial of food is mainly behavioral.  At one time it may have been caused by reflux or a sensory issue, but has now it has developed into a behavior.  At inpatient therapy, there would be five feeding sessions per day at 3 meals and 2 snacks, as well as other therapies sprinkled in throughout during the day.  I contacted the hospital where the therapy would take place to ask how long the waiting list is, what insurance covers, and my ability to work while we live there for five weeks.  The wait list, once the evaluation occurs, is 4 weeks.  His evaluation is May 15th.  She said they are at full capacity for the beginning of June but there are still summer openings.  Insurance, if it does cover this treatment, covers it 100 percent (after deductible). And the answer to my last question was more vague — they have wi-fi.

Today, we had our first appointment with a behavioral psychologist.  I was all over the place describing Roger’s behaviors, my concerns, issues in the house, etc.  One area I have extreme issues with is guilt.  I feel terribly guilty when I see Roger uncomfortable or frustrated in his therapies.  I believe my biggest fear of inpatient feeding therapy is how uncomfortable and difficult five feeding therapies will be for Roger and how much guilt I will feel each day there.  Another concern I have is that if the therapy was during the school year would the break in his daily school routine cause regression in other areas.  I brought up the guilt and the feeding therapy with the psychologist.  Her retort was that feeding/food/nutrition was more important.  This was even prior to me listing the items Roger will eat:  goldfish, pirate booty, veggie straws, oreos, freeze dried blueberries and strawberries, chocolate pop tarts, gummy bunnies, and popsicles.  If we are lucky, he will consume part of an apple, french fries, pizza and potato chips (How funny it was that Rob was thrilled Roger ate potato chips…he talked about it for days)!  Where does he get his protein? was the psychologist’s big question.  He doesn’t intake any protein.  He only intakes fat and sugar.  That is why we are seeking feeding therapy.  His weight is normal, but he has zero nutrition.  Hearing how blunt she was about the feeding therapy and that is the most important issue for him right now (as echoed by OT) has eased my mind a bit and made the decision easier (when the time comes).

There are other issues we have:  Roger will not do anything to help himself get ready for school or for bed — if I change his diaper, he will not even help pulling his pants up.  We still co-sleep and I am almost a walking zombie from lack of sleep.  Meltdown, being a dictator, his sad streaks, etc….

One step at a time.  First, I need a nap!

I read such a great little article about autism today.  I posted it to my Facebook wall, for those who are connected to me on that social media.  The gist of the article was accepting autism (“Your son has classic autism. ” the Child Psychiatrist said.  “There’s no cure.  Anyone who tells you they ‘cured’ their child of autism didn’t have a child with autism.  It’s that plain.” And instead of sadness, I felt relief.)

Roger, too, was diagnosed with classic autism.  Since he speaks and seems intelligent/manipulative, most people would not understand that why he would receive that diagnosis.  It is evident not only in the flapping hands/constant spinning/pummeling his full body into the wall or couch or me, but also nuanced behavior with his diversion of looking at you when he is actually speaking, him slightly moving his body in such a way as to direct his back towards you, tensing his hands when trying to hold his hand without giving proper notice, the discomfort in his face when he puts food in his mouth, etc.

The issues that have arisen have been what is the autism and what are behaviors that need to be changed for all of our sakes?  I admit that I have given Roger more leeway based on the fact that he has always had to work so much harder than other children, had a 20 hour therapy/work week starting at 18 months old.  When he began finally using his words via signing or speaking, we used positive reinforcement in allowing him to receive anything he would request.  This is backfiring now.  We started co-sleeping with Roger around the 13 month mark and it helped him to bond with us more even when he was starting to withdraw.  This is backfiring for me now, since he thinks his bedroom is our bedroom and daddy’s bedroom is the master bedroom.  I am starting to need my own space.  And Rob and I need our space together.

His occupational therapist asked if we were seeing a psychologist or behaviorist to help with his behavior issues.  I had not told her about the above issues — she questioned based solely on the behaviors she observed during therapy.  I have gone to a psychologist and had visits with a parent trainer.  Both had opposing views of how to deal with everything which added more inner conflict.  I was not impressed with either, so I should expand my search for a private behaviorist (not through LISD) and/or another psychologist.

So many things I want to do to help us all, I just don’t know where or how to begin and where I would find the time!  I know I will find the time…I always do.

Since I blogged last week about therapy fails, I wanted to update you on how this week’s therapies have been thus far.  I did call Baylor on Friday to change therapists, but OT (at all their facilities) have waiting lists for afternoon sessions.  I was quite nervous to see how Roger would react to going to Occupational Therapy on Monday.  He noted that Jonathan would not be there but that he would be seeing Janythe (his speech therapist).  I told him that speech was later in the week and that he would only be going to OT.  He did not seem upset.  Upon arrival, there was a marked difference in his therapist’s demeanor.  She was much more doting/smiling/personable.  She gave more positive reinforcement.  I am hoping tomorrow’s session will mimic yesterday’s!

Play therapy was pretty identical to last week’s session.  Roger is stuck in his preschooler ways and Miss Janecek is no longer a stranger he needs to impress.  Next week is our final session with Miss Janecek.  However, Dr. Harrier did email me about trying to coordinate a structured play with one or two other children to teach Roger to play with other kids.  He only wants to play with other kids if he is in control.  Also, he has a tendency to turn his back on others while playing — to shut them out.  I am hoping we can arrange a multi-child play therapy  for the summer.

Another item I am trying to arrange for the summer (in addition to the possibility of feeding therapy) is private swim lessons for Roger.  He gets too easily distracted to attend a class with other children.  I think private lessons would be a much better arrangement for him and allow him to focus better.  Additionally, I wrote a classified ad to for our HOA’s newsletter to gauge if there is interest in an ASD parent/family support group.  I am hoping to have some feedback from the ad!  Another possible title on my radar is Directory Editor for SEPTSA (PTA for special needs children for Lewisville Independent School District).  And, I have been in touch with the PTA for Roger’s new PPCD school, which will also be his elementary school.  I am excited to be more involved in his school next year and in the school district!

This weekend was one of the best, family-filled weekends we have had in a long time. Friday was a holiday for a lot of people, so Roger got to play at the neighbor’s house before I had to work.  Rob got home early from work and was able to bring Roger to another neighbor’s house after making some yummy chocolate chip cookies.  Not having vinegar and only using water led to a bit of an easter egg coloring fail.

Saturday was busy and fun.  After a restless night of sleep, we had a lazy morning before heading out to the All Kids Count Fair.  It was absolutely amazing.  Next year, when Roger is a little older, he will appreciate some of the tables for craft-making, face painting, etc.  However, in the meantime, he loved the music and dance floor.  It was difficult getting him to explore outdoors.  A tractor ride is what got him excited to leave the indoors.  Unfortunately, Roger had no interest in seeing the petting zoo or the horses or taking a pony ride.  Eventually, he enjoyed the bounce house obstacle course and the playground.  He also was able to meet the Superheroes!

After the fair, we headed to a first birthday party in Plano.  It took Roger a long time to warm up.  He was overwhelmed and wanted to play with one particular truck for the first half hour or so (another little boy wanted the same toy, so there was a bit of stress).  When it was time for the birthday boy’s cake, Roger was so excited and had to be right next to the birthday boy.  He laughed uncontrollably at the smash cake.  After the cake, the party thinned out and that is when Roger got more comfortable playing with other kids.  Lucky Roger also got to have dinner at McDonald’s and met other “friends” to play with that evening.

Sunday was a very lazy morning again.  The easter bunny visited!  After Roger found all the eggs, he got a nice basketful of toys!  My husband made a delicious breakfast and we enjoyed it on our patio sipping mimosas.  After breakfast, we all did yard work.  Roger loved helping through away weeds!  The day proceeded with his social skills playgroup and another trek to McDonald’s in the pouring rain.

Last night we all slept soundly and did not want to wake up for school/work this morning:  signs of a perfect weekend!

Since Roger did not have school today, I was able to schedule an early morning play date before I had to work.  It’s interesting when therapists tell me that in his play and speech, Roger acts like a pretty typical toddler.  Then I remember that these specific therapists only work with developmentally delayed children and do not have kids of their own.  They seem so assured that he is playing appropriately and speaking appropriately for his age.  I am doubting they have viewed him playing with “typical” toddler-aged children.

The difference is glaring.  Roger remains pretty much by himself and usually does not play with the toys as they are meant to be played with.  He will pick up motorcycles and fire engines and inspect them/spin the wheels.  If you encourage him to put his car on a track, he physically has to move his car all the way around the track.  He will not push and let go of the vehicle.  He still is unable to do a back and forth tossing of a ball, kick of a ball, or any other type of back and forth play.  He is nearly four and still remains playing with one toy for 30 seconds before moving to the next. He does not stay on task.  In theory, he could play with cars for hours if that involved just removing cars from a box and staring at them one by one.  In therapy and in those type of structured settings, Roger does perform the way they want him to, as a “typical” toddler.  He does not generalize his skills — typical trait of autism.

He wants to have play dates and likes the idea of meeting new friends at the playground or McDonald’s.  Hee usually attracts younger kids since he plays more like they do.  However, he usually likes to follow the older children who take notice that he is “different” and usually ask me why he is doing what he is doing or saying what he is saying.  I am glad he does not understand the questioning right now because making friends is so  much fun for him.  He goes up to them, unusually close of course, waves and screams hi at them until they respond.  He introduces himself and tells them it is nice to meet them, even if he attends school with them daily.  Most parents and therapists find this all very endearing and it is, especially now that he is 3.  It is obvious that this is echolalia and probably will not be seen as so cute at 10, 14,16, etc.  We will continue having play dates, going to playgrounds, attending social skills playgroups, etc.  As long as he is happy doing so, I am happy bringing him wherever I can!

Although not even four years old, Roger has spent over 2 years in various therapies.  While in early intervention, there were always high and low points in a cycle…like a repetitious bell curve.  The low points always seemed to last longer than the high points.  Of course, that is probably not true.  When there are constant meltdowns involved, time tends to move slower than during times of giggles and joy.

Since beginning preschool (and even the move to Texas), the curve has not seemed as dramatic as the bell curve.  There have been times of sadness and bad moods, but not really times of screaming and crying during therapies.  As noted in yesterday’s blog, Roger did not fare well in play therapy and he has a new occupational therapist.  Although Monday’s OT session was more tense than it had previously been with his other therapist, there were no huge meltdown moments.  There were some NO’s here and there, but that was all.  Tuesday’s play therapy did have a 15-20 minute freeze time where all playing ceased and Roger kept whining and/or yelling.  Well, today was his second session with his new occupational therapist and it was as tense as the first session.  The therapist just as abrasive; she does not smile or seem in the least bit happy.  It is strange that there are people who choose to work in pediatric fields that do not seem warm towards children.  This lady is one of them.  She seems like a good therapist for an adult or a child older than toddler age.  His therapy session put him in complete meltdown mode by the time he had speech therapy.  Unlike his occupational therapist, his speech therapist is very sweet with Roger and very jovial.  However, two-thirds of the therapy was spent with Roger yelling that he did not want to play and he did not want to go to Grapevine again (that is where therapy is and what we call going to therapy); he wanted to home time.  I felt bad that she received the brunt of his anger/despair/frustration.

I am feeling the occupational therapist is not a good fit for Roger.  She wants to begin working on food therapy next week.  He hardly wants to do tasks he enjoys with her.  I think adding food to the mix is a bad choice and could only backfire into retreating from food even more.  How long should one wait to see if a connection grows?  How much time should I give before requesting a new therapist or traveling much further to where his old therapist is now located?

Despite the therapy woes, today was not an overall bad day.  We had Roger’s Extended School Year ARD which went extremely well.  Also, post-therapy, Roger and I enjoyed our neighborhood playground.

This little man is so amazing that it hurts my heart to see him so upset with a therapist who seems only goal-oriented and not well-being oriented.  It was quite a contrast to a phone call I later received from his school occupational therapist who said he is progressing so much since November.  More importantly, she sounded so full of love and hope describing how much she enjoyed working with Roger and how much fun he they have in therapy.  Although I could not see her face smile, I could hear her voice smile.  That makes all the difference in the world.

In parenting, consistency is key.  In the parenting of a son with autism, routine is essential and change is the enemy.

There has been a regression in some of Roger’s behaviors this week.  His shoe issue which I posted about January 3rd has resurfaced along with the need to wear pajamas as soon as he gets home from school.  Other traits of note that have reappeared:  periods of constant spinning, refusal to play in play therapy, being a bit more wrapped up in his own world — truly not listening to me or any of his therapists.

Roger has had two major upsets to his routine:  1.  His father was in NYC visiting family Thursday through Sunday.  Roger briefly saw his father Thursday afternoon and did not see him again until Monday morning.  2.  Roger has a new occupational therapist.  In addition to his old occupational therapist being amazing, the new therapist seems much more demanding of procedures (i.e. Roger has to ask to play with items by using full sentences, look straight in her eyes, is not allowed to make many choices).  I think he is anxious and, possibly, rebelling.

With summer approaching, I am fearful of all the major changes coming our way.  First off, he is being terminated from play therapy since he has made great strides and his therapist is discontinuing at the end of her semester at school.  His last session is the first week of May.  Secondly, Roger will be attending Extended School Year at a different campus, with a different bus route, different “friends”, different teachers/aides, different school hours, etc.  Then, even with the ESY, there will be a couple of gaps between sessions.  Lastly, with Roger’s feeding evaluation on May 15th, there will be a new emphasis of therapies on food via OT, speech, psychology and nutrition.

Wish us luck!

So much of myself is defined by my son.  My work at my place of employment is done to provide money and insurance for Roger’s therapies.  My “free time” is spent driving to these therapies and engaging my son.  My pre-work hours are spent getting my son ready for school and my post-work hours are spent getting my son ready for bed.  My sleeping hours are spent at my son’s side holding and comforting him during his restless night’s sleep.

My husband hardly gets my undivided attention and I barely receive any of my attention — a quick shower, a 5 minute workout, seldom more.

This weekend I went to brunch and was mostly quiet.  I realized that besides discussing my son I have virtually nothing to discuss.  I used to be interesting.  I used to read many books a week, watch various genres of film, enjoy art exhibits, see live music, have intellectual conversations.

I have lost a lot of me.  I am at a loss on how to recover me.  I am a mother first and foremost.  A lot of my waking hours are spent on being a mother of a developmentally delayed child.  I cannot shorten those hours.  The other hours are spent feeling completely spent!

There is no easy resolution…first come awareness, right?!

Yesterday, in my very short post, I spelled out some of my “resolutions” or my yearly to-do list/make things better list.  I did go to the gym, work-out at home, and eat healthy all day (yay), but my patience failed me.  And the one pushing my impatience was my lil man.  It began on our way out the door to McDonald’s when Roger had a meltdown over having his shoes on.  Lately, that has been a huge issue but he usually overcomes it in the promise of french fries, ice cream and play.  Once there, he was a pretty good boy until about 15 minutes before we left.  He kept climbing into high chairs (that he cannot get himself out of) and climbing on the outside of the play structure and “hiding” in the garbage.  He was having a grand ol’ time despite my pleas to stop.

Our next stop was the gym where I promised him a smoothie.  However, the shoe issue arose again when leaving McDonald’s and he complained all the way to the gym.  At the play center, he got to take his shoes off and we had our third struggle upon putting shoes on to get the smoothie and go to the car.  He crawled, walked on his knees, and finally removed one of his shoes.  On the way to the car, he attempted to remove the second shoe.

The sensory issues continued into bedtime where he flipped out over putting on pjs.  He has been doing this for the past week.  He kicks, spins around, flails his limbs, screams…and then he cries and tries to pull down his pant legs and pull up his sleeves.  He cried himself to bed.  Today, the sitter stated he refuses to wear his pants.  She said he seems very uncomfortable.

I made a doctor’s appointment for today.  Besides his worsening sensory issues, he’s been complaining of a stomach ache this week, had diarrhea and, subsequent, diaper rash, his eczema is flaring up, plus a bit of rashes.  I am not one to “go there” but I think this may all be an immunity issue that could go as far back as his original stomach virus, that led to the toxic arthritis in his leg, that meandered into croup, fevers/colds, current stomach ache and other issues listed above.

I am hoping the doctor doesn’t look at me like I have 3 heads!  I am hoping we do get some answers/help and that Roger will be feeling better in no time!

I don’t know if I have much to write this January 2, 2014.  However, I decided to add a new post and see if anything arises…

I could write about my resolutions:  be more patient, lose weight, be healthier, reconnect with myself, connect better with my son and husband, read more books, educate myself more, be more optimistic, establish deeper roots in our new community, aid my parents better in the years to come, spend more time with family and friends, beat myself up less…I think this list is endless and it is truly not a list of resolutions, but a list I remind myself of from time to time of what I have yet to accomplish. Being Roger’s mother has enabled me to begin work on many of those items (although I still have a long way to go).

Cheers to 2014 and my first writing exercise of the new year!

Today was our first play therapy/family therapy at United Through Hope.  We have a lot of issues with Roger not listening to me or my husband, following our directions, heeding our warnings of anything dangerous, etc.  The session was really good and I received a lot of good feedback.  I left feeling very optimistic.  I had a couple of nice hours with Roger afterwards before it was time to work.

However, now I hear my little man screaming at the sitter for not fulfilling his list of demands or not wanting to listen to her telling him not to do dangerous things (playing with sockets).  I guess the honeymoon period with the sitter is over.  The honeymoon period usually lasts longer than the few weeks she has been his sitter.  Are his behaviors getting worse?  Is he not as concerned with how others will react to his meltdowns?  Suddenly, my mood has switched from happy to concerned and, I have to admit, sad.

This will not be a quick or easy fix.  We have a lot of work to do ahead of us.  I know our sitter will have to be onboard and make the necessary changes as well.  We currently have a high school sitter, so I am fearing this may be too much to expect from her.   I also fear that my husband, not being able to attend the play sessions,  may not be able to act consistently with the way I am being taught.

We all have to be aware, open to learning, and be consistent.  I am glad we have a second session scheduled this upcoming Friday.  I need to work my hardest to ensure a happy mommy, a happy daddy, and, most importantly, a happy Roger.

This morning I was not awoken by a toddler’s fingers in my face telling me “mommy wake up”.  I did have a toddler tossing and turning next to me, but he was quiet and not as restless as he usually is when he wakes.  I put my arm around him and felt wetness.  I touched his face, the sheets, pillow, turned my phone on and saw the evidence — my poor baby boy was sick.

So the day for us started with the changing of the sheets, the changing of the boy and mom, a wiping of the floor, a bath for the two of us, another wiping of a different part of the floor, another outfit change, two loads of laundry, another outfit change for both of us, another floor clean up….you see the pattern.

We went to the pediatrician who subscribed an anti-nausea medication for the lil man.  He seems to be doing better.  He even napped with me on the couch (which may be an all-time first for him).

After all the laundry was done and Roger fell asleep, I finally had an hour “to myself”.  I watched a bit of Parenthood, made some therapy related calls, relaxed…

I am hoping he is feeling up to a teeny bit of trick-or-treating tomorrow evening…this is the first year he is actually excited to dress up and knows the phrase trick-or-treat.  Fingers crossed!

Well, we met last week with a Behavior Therapist and we decided that a couple of times a week she would observe and give suggestions on how to make our situation easier/nicer/less full of friction.  Today was the first observation day.

What was observed?  A perfect angel.  We even went out of our way to try to trigger some bad behaviors — going to Target, making him leave the toy aisles, etc.  He was so smitten by the therapist and explaining everything to her that he was totally compliant.  Our scheduled 1.5 hour session was reduced to 1 hr.  She noted that this is not rare for a child’s behavior to be completely different with a new person.  We will have a phone conversation later this week detailing what normally occurs and if there have been any incidences and what set them off.   She will have a plan based on that and the previous observations.

Now I feel like it is me that needs therapy and not Roger and that this lady thinks I’m totally crazy.

Yesterday was a good day.  Today was not such a good day.

Everything is such a struggle with Roger.  I know 3 is a tough age for any kid and that tantrums are a common denominator.  But, adding the volume of his screams, the length of his meltdowns, his inability to be distracted or redirected, his hitting/kicking me in public, this is all becoming too much to handle.  Being out with him for a couple of hours feels like it drains all my energy for the entire week.

Well, after our outing where all the above occurred, we met a therapist in our home.  Luckily, Roger’s fantastic behavior continued while the therapist was present.  She got to see him rage, scream uncontrollably, kick and hit me, roll around on the ground, headbang, etc.  She even got to see him kick me then grin afterwards.  No in-depth explanation of what Roger does while he acts angelic for the interventionist needed this time around.

We discussed how our therapy should focus on outings and controlling his behavior in the natural environment.  At least, even if I decide on another therapist, we concluded that center-based therapy would be of no help at the present time — so that erases about 15 ABA clinics off of my list.  And one of those clinics confirmed that our insurance does not cover ABA therapy.  Although I knew this was the case, receiving the denial letter depressed me even more.  It is strange how that works.  I did send a letter to my job telling them of this incident and asking them to consider a plan that does include ABA for 2014.  One can hope….In the meantime, $50 an hour for therapy is a deal in these neck o’ the woods.  That money tree better start growing really quickly!

So far, today has been a good day.  For me, it does not take much to make a good day.  For starters, we have had no meltdowns thus far.  Secondly, I have heard back and scheduled tours/meeting of several clinics/therapists.  Thirdly, I got some exercise in and have been eating healthier.  Finally, and most awesomely, I finally talked/had coffee with a parent in the neighborhood.  She too is a mother of a child with autism and is also new to Texas.  It was great discussing our situation, comparing TX to CA, and other such conversational topics.  I hope to establish a great friendship in the area.

Today gives me hope that I will have many other good days in the future!

Well, as I rambled about yesterday, some ABA/Behavior programs have contacted me today.  It seems all that is standing in our way is a big stash of money!  The programs vary in price from the low end: a 6 hour week of therapy will cost $450/week and the high end: an intensive program will run $300/day.  I do not believe we need an intensive program, but we also do not have $2000 extra dollars each month for the 6 hour therapy week.  We do have great insurance.  But, of course, insurance companies find a loophole to covering ABA therapy.  Despite the heavy price tag, I still have a meeting set up with one behaviorist.  We need to implement some plan.  We are on the list for Easter Seals, which is partially funded by the state.  However, that accounts for the long waiting list.  We may just have to private pay and hope we get selected for Easter Seals sooner than later!  I guess we will start experiencing why some families go bankrupt funding autism services.

I think this year for the holidays we may be asking for donations to the ABA fund…

I feel like today is the first day of our new routine (or at least our routine for right now).

Unfortunately, Roger’s recent behavior has stepped up our need to put a push on ABA therapy.  We have been on a waiting list for Easter Seals of North Texas before we even had a Texas address and I mailed out a ton of information to the University of North Texas, Denton.  Easter Seals seems like it could be a forever waiting list and I am not sure the turnaround time for UNT.  So, today I made numerous phone calls and left numerous messages.  I did happen to speak to two other places that provide ABA and hope that the ball gets rolling ASAP.

Besides the move, I think the big change in Roger’s routine is his amount of “free time”.  While in early intervention, he had 2 hours of therapy a day, two playgroup sessions a week, two speech therapy sessions a week, one occupational therapy session a week, and one food therapy session a week.  In this great world we live in, once a child turns three, all those “extra” sessions become either provided by the school district or paid for privately.  While in CA, he did still get two playgroup sessions per week and two hours of one-on-one in-home therapy per week paid for by the Regional Center.  We also privately paid for an extra day of speech therapy per week.  In addition, his school schedule was 4 hours per day.

Now, being in Texas, Roger’s PPCD program is 3 hours per day and that sums up his current therapy schedule.  I truly believe Roger strives with the additional hours of therapy/structured setting.  If there is a long wait, we may opt for OT or speech or perhaps some other structured play outside of his school hours.  I am not eager to start investigating more today.  Hopefully, a consultation for ABA is in our near future!

After my last post, my life has undergone major changes:  My husband has changed jobs which has led us to moving from Northern California to Northern Texas.  I have taken on full-time hours at my paying job while still working the same hours at my “mother” gig.  We have a new system to deal with and learn about in regards to Roger’s services for autism.  We are still getting settled into our new surroundings, still have boxes to unpack, rooms to rearrange, furniture that needs to be purchased, schedules/routines that need to be worked out, and a lengthy list of what I want to accomplish in this new routine in this new setting.

My first goal for myself is to reach my full-time hours without having to work after putting Roger to sleep.  At that point, I would like to add exercise back into my daily routine.  As if that may be asking too much, I also would love to read and finish a full book.  In my spare time (um, yeah), I want to meet some new friends and socialize.  Finally, I would love to spread my advocacy wings here in TX.

Oh, and one last thing, I really do hope to keep this blog up-to-date!

Blogs can be quite the effective form of communication.  After yesterday’s post regarding sensory friendly activities not being available in the Chico area, the Yellow Door contacted me and we have a date to discuss the creation of such events this upcoming week.

Another issue I had touched upon yesterday was the absence of an autism society in Northern California.  I had relayed to the Yellow Door that I feel there needs to be such an organization here.  I know after Roger entered early intervention, I searched the Chico area for any sort of organization to aide me through that tough time, especially since family and close friends were not in close proximity.  Today, a parent contacted me asking for the same sort of information.

Is there a website holding all the knowledge that those in Butte County could use to know all the services and support that is available to them?  Unfortunately, I have not found any such all-encompassing website.  Any lists of information seem dated and it is as though the ball has been dropped.  I will once again call the Autism Society of California next week when all have returned from the national conference.  In the meantime, I am going to do my own research on how to create such a website and promote it throughout the county and state.  I would also like to connect an anonymous blog to this blog or that site for parents to be able to give opinions on services, to discuss issues, or convey their own stories.  Chico’s autism advocacy and sources of information need to expand and to be refined with the growing numbers of children diagnosed with autism and their parents trying to wade through it all.

I started today with a sense of urgency to get the ball rolling on some sensory friendly activities in the Chico area/Butte County.  I googled what specifically it would entail to make each activity sensory friendly and then I proceeded to call the following:  the corporate office of Cinemark, the Butte County Library Administration regarding storytime, the bowling alley, the Gateway Museum, and CalSkate.  I mainly left voicemails or messages with individuals who were leading me in the direction of sales, as if I needed to rent the space up front and hope to gain back my personal funds at the end.

I started thinking of possible fundraisers and what avenues to pursue for help:  ARC of Butte County, Rowell Family Empowerment Center, Far Northern Regional Center, the Yellow Door.  Hmmm…my mind was racing.  Then, when considering presenting this to the support group and what it may entail for each of us and glancing over my seaerched pages, I noticed the majority of these events were sponsored by autism societies (e.g. the Autism Society of Nebraska or AutismSpeaks chapters).  I looked up the Autism Society of Northern California and discovered it did not exist, but I did find a listing for the Autism Society of California.  The closest chapter is SF Bay Area…and there are a dozen chapters south of the bay area.  I quickly called and left two messages regarding how to open a chapter in Chico/Butte County/Northern California.  I did receive a message back stating that they are no longer regarded as chapters but “affiliates”.  There is a national conference occurring in PA right now, so I should not expect a call back until next week at the earliest.

Then, I was wondering, “Geez, there is not a chapter in the Sacramento area listed, that is odd.”  I decided they must have an AutismSpeaks chapter in that area instead.  Then I quickly searched for AutismSpeaks Chico/Butte County and was referred to Autism LifeSpan which used to put on some gatherings for parents, but has not lately.  I left a voicemail with them regarding how to jumpstart sensory friendly activities in the area.

It is sad that none of these exist where I live.  When Roger started early intervention last February, I could not believe a support group did not exist.  I was lucky enough to nag Rowell that they suggested that I start the support group and become the parent facilitator.  I am hoping some of my phone calls today will make an impact for this area and all these great families!

I start, again, another post apologizing for such a delay in my blogging.  Life gets in the way of blogging about life at times!  I feel a bit like I can exhale, at least until Roger starts preschool.

So much, yet so little, seems to have occurred in the past two months.  I had my surgery two months ago (to the day), although it seems a lifetime ago.  Recovery was very quick, despite the two weeks following in which I thought I’d never feel normal again.  But in two months time, I am back at the gym, back at my normal working hours, back on top of Roger’s therapies, appointments, and follow-up phone calls, back on top of paperwork for Rowell, and back to building up my social network and, hopefully, cementing a third career (after Mother and Knowledge Management Assistant at JL) as an Autism Advocate.

I am currently my son’s autism advocate, but I would like to branch out further. I have several ideas for expanding services of the Butte County ASD Support Group of which I am the parent facilitator.  I have several community proposals for sensory friendly activities in the Chico area that I need to follow up on later this week.  And, as a silly gesture, I have ordered business cards.  I am hoping to meet new connections at the Family Fun Fest in Corning on August 9th where I am manning a table representing the support group and, possibly, through LinkedIN and the group’s Facebook page, as well as flyering more aggressively.

I am excited for what shall be a great 40th year for myself, 3rd year for Roger, 6th year of marriage and 12th year of commitment to Rob!

It is amazing how energized I know feel now that Roger’s IEP is over.  I still have to sign the IEP tomorrow at Loma Vista.  Although I was hoping to get a referral for school OT, I do understand they need to see how he does in the school setting.  Hopefully, he will already have his evaluation completed and be a participant in the Sensory Clinic at CSUC by the time he turns 3.  Roger will continue to get 45 minutes of speech therapy per week through the school district and I may continue to pay for a second private session per week.  Finally, his classroom was assigned.  Roger will be in the inclusion classroom at Innovative.  During our initial tour of Loma Vista, the school psychologist stated that it is very rare that they put a new preschooler in the inclusion program and restated that during the IEP.  However, they think Roger is very intelligent with some very great cognitive skills for his age.  The consensus was that his autism, while noticeable, should not hinder him in this setting.  They are hoping that the quicker pace and being around typical children would aid him while being in a full special needs class may hinder him.  They have not assigned his room at Innovative yet, but it typically has 16 typically functioning children with 6 special needs children from the Chico Unified School District.  I feel very proud of Roger and excited for preschool!  We had put Roger on the waiting list for Innovative prior to his autism diagnosis.

In addition to being post-IEP, we received news today that my father is cancer-free and his next appointment is scheduled in three months!

This week, I truly feel lucky!

Last night, around midnight, I woke up to use the toilet.  Snuffles came in and laid down.  I brought her into the office to be with Rob.  Crawled back into bed, yet I could not fall back asleep.

The thought(s) keeping me awake:  my upcoming surgery.  I started thinking about Monday’s pre-op appointment, the day of surgery, the aftermath, etc.  I think the focus of my last couple of weeks, Roger’s appointments and finding a dog, were wonderful distractions from me.

Yesterday, at Roger’s playgroup, a mother told me that her mother-in-law just had a laparoscopic hysterectomy three weeks ago.  She just returned to work and is still in pain.  Now I am very worried as to how Roger will respect my body’s need for recovery.  He is too young to understand.  He touches everything roughly, not meaning to do harm.  We have been trying to teach him gentle, especially with the addition of Snuffles.  However, he is not good at generalizing this skill.

There are two weeks left to worry, have night terrors, be sleep deprived all in the name of obsessing over my surgery.  I am glad I chose the first available appointment, otherwise this brain racking would continue for a longer time.

As most of you know, we have a new addition to the clan:  our lovely pekingese, Snuffles Israel.  The journey to Snuffles began after the removal of Roger’s EEG.

With the bulk of Roger’s appointments having been in Sacramento (a 1.5 hour drive from Chico), we always try to do something fun while in the area.  This particular day we decided to take Roger to Funderland — an amusement park for toddlers which we had noticed after taking him to the zoo after his other neurologist appointment.  After Roger rode on all the rides, I noticed a pony ride a few yards away from the entrance.  What happened to also be at the pony ride was a showing of dogs from a shelter.  One dog, not in the enclosure, caught Rob’s eye.  Rob now wanted a dog, this dog.  I have been eager for a dog, but Rob has thought of excuse after excuse (most notably our landlords not wanting pets in the house we rent).  However, Rob got the contact information on the dog and called the following day.  After some prodding, the foster family said we could adopt the dog.  Rob called our landlords, had a lengthy discussion, and they ok’d a small, housetrained dog (I previously brought up the issue via e-mail but was not currently interested in any particular animal).  Unfortunately (or fortunately in hindsight), the foster family called back and said they were too attached to their dog.

That set off an obsession in me to search the local shelter websites, petfinder.com, adoptadog.com, etc. for our new doggie.  I made a few appointments at Butte Humane Society and the Chico shelter to meet some doggies.  None were the right fit, fortunately.

I kept the quest up and found two adorable Pekingeses through the North California Pekingese Rescue:  Snuffles in Sacramento and Butter in Berry Creek.  I made an appointment to meet Snuffles after Roger’s neurologist appointment on Thursday the 18th and to meet Butter on Sunday the 21st in Oroville.  Well, it was a family affair with my mother, father, Roger and me on the 18th.  We fell in love with Snuffles, so we decided to go back on Saturday before Roger’s endocrinologist appointment and have Rob meet the little lady.  As soon as Rob saw her, he was attached!  So, we went to the appointment and headed back to adopt our new doggie!  As if our schedule was not packed enough, I fitted in a grooming appointment and veterinary appointment this week!  What are two more appointments when you don’t have a moment to breathe!  Hey, but she’s worth it.

The past couple of weeks have been incredibly hectic.  Poor Roger has had so many doctor appointments…and they happened to be in Sacramento.

Two weekends ago (Friday and Saturday the 12th and 13th), we had to go to Sacramento for Roger’s 24 Hour Ambulatory EEG.  The attaching of the EEG was an arduous hour in which Roger screamed and sweated so heavily that the electrodes on his forehead had to be reapplied a couple of times.  We were so concerned about how Roger would do with the EEG on his head…would he be pulling at it constantly?  could he sleep at night with it on his head?  would he keep the backpack containing the component on his back without much fuss?

The 24 hours were an exceptionally mellow time.  Roger was well-behaved, only tried to remove the device twice, and slept a still 10 hours.  I think the pressure on his head actually calmed him.  I mentioned this during his follow-up appointment.  The removal of the EEG was, perhaps, even more traumatic due to Roger recognizing the medical center.  The follow-up appointment was on Thursday the 18th.  The results show he did not have a seizure and his brain activity was normal. We have our next appointment in 6 months and we hope it goes as smoothly!

This past Saturday the 20th Roger had a pediatric endocrinology appointment due to his high thyroid levels in the blood work done at the pediatric neurologist.  It was a short, positive experience.  Roger has a genetic condition that 1 in 15,000 have:  high level carrier proteins.  There is no harm done and no treatment needed unless we see a change in his tsh level or if his neck glands appear larger.  I have goiters, so I assume he received this genetic component from me.  If he has children, the doctor noted, they shall also be carriers.

Unfortunately, today Roger had a dentist appointment for a dental cleaning.  His last appointment at the dentist was for a filling of a cavity in his front tooth and the sealing of his molars.  It was a long, scary appointment.  Therefore, when hearing we were going to the dentist, Roger proclaimed “NO”.  Despite his new-found hatred of the dentist, he survived the appointment and retrieved a motorcycle from the toy box.

What a brave little man to endure so many appointments in so little time!

I have been wondering how to broach the subject of my surgery on my blog.  Numerous people have asked me what kind of surgery.  I am very open and honest.  I will be entering my 40’s with a little less of me there.  I will be having a full hysterectomy:  the removal of my uterus and ovaries.

During the time leading up to my consultation, I had researched my options and was very certain that this was going to the be the solution.  However, the hours leading up to my appointment, my anxiety started surfacing (and has remained).  The consultation lasted two hours, was very thorough, included a second ultrasound/sonogram, and concluded that this was the only real option for me.

Before leaving the office, I made the first available surgery appointment, as well as the pre-op and post-op appointments.  I am very glad I have opted for the closest surgery date.  I am already obsessing over the surgery, over the recovery with a toddler, and the meaning associated with losing your reproductive organs.

One often hears the topic of the association of the removal of breasts as the removal of “womanhood”.  However, it is undoubtedly the removal of one’s uterus and ovaries that could be considered the quintessential removal of “womanhood”.  That thought has saddened me, even though it is not something that I can see with my own eyes on a daily basis or that has been kind to me (except, of course, for the birth of my son).  Actually, I must pause and say that I am truly blessed to have been able to give birth to Roger and I will never lose sight of that.

I may be losing something physically, but gaining some insight and health for the future.

Today has exhausted me…maybe it is lack of sleep — Roger has been tossing and turning the last three nights and has disrupted my sleep terribly.  Today’s appointments between 8:30 and 12:30 has added to the fatigue:  1st evaluation at Loma Vista, Caper Acres, OT with Willow, Advance Kids, followed by work at 12:30.

At our first appointment at Loma Vista, I asked if all of his evaluations could be completed before my surgery on May 9th.  Amazingly enough, the other evaluations have been scheduled:  Speech evaluation on Friday, April 26th, Play-based assessment on Monday, April 29th (immediately followed by my pre-op appointment), and Roger’s IEP on Wednesday, May 1st.

My lists of appointments and things to-do leading up to and following surgery makes my head spin.  I actually feel myself cognizant of holding my own breath.  I have to continually remind myself to breathe!

Breathe in…breathe out…namaste.

Appointments on top of our regular therapies punctuate this month and next.  Yesterday, I had an ob/gyn appointment.  Next Thursday, Roger has his first evaluation for Loma Vista preschool (the first of three or four that must be completed in April and May).  Friday, we drive to Sacramento to have a 24 Hour Ambulatory EEG placed on Roger and will drive back Saturday to have it removed.  The following Thursday, we drive back to Sacramento to find out the results of the EEG.  For now, there is a tiny break until my pre-op appointment on Monday, April 29th.  Then, my surgery is scheduled for May 9th, with two post-op appointments scheduled for May 28th and June 24th.  As I said, that does not include the 2-3 other evaluations at Loma Vista, Roger’s IEP, a possible endocrinologist appointment for Roger, and whatever else may “come up”.

I know May might have various appointments for Roger and I will be in recovery.  It will be a difficult two months, at least. My husband asked why I was having surgery so quickly.  I needed to schedule the first open appointment for my own peace of mind.  I am already obsessing over the surgery and do not need additional months to not fully be here when my mind is elsewhere.

I am trying to get as many tickles and rough-housing done with Roger this next month because I will not be able to pick him up for 4 weeks.  We are working on a social story so he may understand what is happening to mommy.  Let’s hope that helps a bit!

I was concerned that Monday’s bedtime crying “Don’t be sad” session would leak into Tuesday.  However, Roger woke up bright eyed and bushy tailed at 2 in the morning.  He was in great spirits, had a great intervention session, went to the gym with me, went to Caper Acres (playground) with me for an hour, went to Target with me, and immediately crashed when I put him in the car to go home — 12 hours after he woke up.  After I got some lunch in my belly, I laid down too and we both had a very nice, very long nap.  He woke up so sweetly and put his head on my chest and we stayed in bed another hour just looking at each other!

Today, there have been moments of meltdowns — specifically during speech therapy and on the way home from the gym.  However, the spunky boy has been the prevalent one the past two days.  He did not nap, so I can hear him saying he’s sad to Ashley.  Unfortunately, it is too late to nap.  We will have to curb his “tired sad” for the next couple of hours til it is an early bedtime.

Let’s hope this trend continues!

Is it possible for a 2 1/2 year old to be depressed? It started out as a cute, little “I’m sad”. Then, when he got into tirades of “I’m sad”, I would tell him that I was sorry he was sad. That turned into his newer phrasing of “I’m sorry sad” which one has to admit is adorable. The new evolution of the phrase is now “don’t be sad!”. Obviously we have all told him that.
To rectify the situation we have tried using other adjectives of happy, silly, etc to help him refrain from using sad as his one emotion. However, this usually makes him scream louder, kick his legs, hit/ scratch me as he repeats, “Don’t be sad! Don’t be sad! Don’t be sad”. What is more heart wrenching are the times he has tears in his eyes and he quietly says “don’t be sad, don’t be sad”. It makes me so very sad.
I would estimate that half of each day for nearly the past month Roger has been sad. Tonight was incredibly difficult. Holding your crying baby boy in your arms as he whimpers ” don’t be sad”.
I don’t know what to do. I am hoping this is a phase. However, I tend to be a depressed soul and always wished my child would not inherit this. Maybe this warrants a call to the neurologist in the morning? Am I overreacting?
Please, tomorrow, let Roger be happy instead of sad.