IHSS-Protective Supervision, Is It Worth the Fight?

Last night after dinner, Gabriel, Lucas and I attended a free informational meeting by IHSS (In Home Supportive Services) advocates to learn more about what services we can receive for Lucas through this Department.  We were referred to this agency through our case manager at the Regional Center a few months ago.  Last week, we had an interview with a social worker from IHSS who deemed us eligible for $5,oo per month of diaper changing duties (see my previous post).  I thought it odd that such a ludicrous amount would be offered to us and thought it was some kind of joke, but after having attended this meeting, it all became clear why the department is so stingy with their allotments to families.

I had posted an inquiry about IHSS on a facebook support group page and found that two families are receiving the maximum allowable hours for their child.  One mom told me about the meeting last night and our family decided to attend and I am sooo glad we went.  I am thinking of re-opening our closed case with IHSS to get protective supervision which we seem to be eligible for (in my opinion) but several factors hold me back which I will get into detail below.  This mom used this advocacy group along with an attorney and was able to win the maximum hours for her 4 year old Down's Syndrome boy.  She said the winning argument was the fact that he keeps poking his eyes for which he had surgery and has a shunt. The other mom said she spent $5,000 in attorney fees and lost her case but still fought for it the following year and won all by herself.

Larry Rosen, an IHSS advocate, and a parent of a child with autism facilitated the discussion last night at Barbara Reilly Community Center in Downey.  He went over the nuts and bolts of IHSS and most importantly how Protective Supervision can benefit a family living with a child who has developmental delays and this is what he shared:

There are two kinds of waivers we can get from the Regional Center to help a family living with disability.  The first is the 6-0 waiver from SSI (otherwise known as the SSI waiver).,  The second waiver is what they call the "DD waiver" or 6V waiver from the Regional Center.  6-0 waiver is income based while families who do not qualify for it due to high income can apply for the 6V waiver.  The other difference between the two is that 6-0 waiver is not institutionally deeming while the 6-V is, which is to say that should anything happen to either parent, the child would qualify to be placed in an institution due to their disability.  Our family received the Medi-Cal waiver with institutional deeming which at the time we got it, thought little about how important it would be in our future.

In the brochure above, it states, " As a result of Protective Supervision, a parent receives an hourly wage to act as the child's stay-at-home caretaker".  As I interpret it, this is in compensation for the government not having to pay for a child in the care of a government institution, which was the norm in the past. The renowned author, Pearl Buck, had a daughter with an intellectual disability and she wrote a book about her experiences of reluctantly having to place her child in an institution.  This was the norm back then and most parents were encouraged to do so by their physicians.  Due to increasing parental wish to keep their children at home and integrate them into their local communities and send them to special needs program in their own school districts, most of them were closed down and the government offered to pay the families to be the caregivers instead of having to pay for staff in these cold and sterile institutions. Besides, the State is saving so much money if you consider they don't need to pay for doctors, nurses, therapists, administrators to run nursing homes, ancilliary staff etc but instead pay parents minimum wage to do all of those tasks.  I am so grateful we live in a country with such a wonderful social service available to the intellectually disabled community but last night's meeting made it clear that these benefits don't come by easily and we need to fight for everything as the government is wary of fraudulent claims.

Through the Community First Choice option, the minimum hours one can get through Protective Supervision is 195 hours which we get automatically if we qualify.  Next year, LA county will be paying $11.00 per hour for care giving cost which adds ups to about $26,000 a year.  The maximum amount including personal care costs for children with severe issues is 283 hours which equates to $36,000 per year.  To qualify, we must first have a "presumptive disability" such as a PPD-NOS, autism, down's, CP..The two parent rule states that at least one parent must be working part time or less.  Manual letter SS-15-01 defines what a full time parent is and there should be no assuming free full time care for a child - meaning, if the child is institutionally deemed, the government can't assume the family will give free care

During the interview with the social worker, it is important to have documented evidence of why a child needs Protective Supervision.  This could be safety goals set up in the IEP such as goals to stop biting the finger, measures to help with fall precautions, which we have already in his IEP.  Protective supervision is allotted only on the basis of dangerous behavior issues and not necessarily from a medical condition.  For example, the little boy who was poking is eyes that had a shunt was granted protective supervision because of his behavior of poking his eyes which could be dangerous but not necessarily because he had a eye shunt.  A child with epilepsy who falls frequently and injures himself may not qualify for benefits because it is a medical condition that poses a hazardous situation.  However, if a child repetitively bangs his head and displays other self injurious behaviors, he would qualify for benefits.   ABA goals to stop wandering such as the Stop/Go activity can also be helpful in our case.  SOC 821 is an Assessment and Mental Functioning IHSS provides our pediatrician to confirm safety risks.  Larry Rosen stated that the behavior must be "regular and random" and it is beneficial to keep a Dangerous Behavior Log to share with the social worker.  Once the case is approved, the family gets a Notice of Action which breaks down all the hours of total need for which most (from 195-283) come from Protective Supervision.

This all sound really wonderful to have and a part of me says fight for this since I am Luki's most important advocate.  But, the fact that IHSS gives such a hard time and is extremely strict on who gets payments makes me think twice about proceeding forward.  Not only that, but some families have stated that social workers have called upon Child Protective Services for kids who are extremely dangerous.  I do not want to have this organization involved in our family life at all (see previous blog on the corrupt nature of LA county's Child Protective Services). Once they get involved it can turn into a nightmare should they feel the child needs to be taken away and placed in foster care.  Larry said that once we explain that this is a special needs child, Child Protective Services usually backs away.

I have 90 days to appeal my closed case and the clock is ticking.  In the meantime, I will be compiling "evidence" of his dangerous behavior through is ABA and IEP goals.

My Latest Rant... I mean, Blog

Yesterday, at the near end of our ABA session at home with our BI and supervisor, we commented on how much improvements Luki has been making this past month.  For the first time, we discovered  Luki can independently place his feet on the pedal without requiring me to tie them with a bungee cord.  See the video below:

We were all surprised at how fast he has been able to achieve this new milestone as we have been doing bicycle training for less than two months now.  I thought it would at least take a year for him to be able to do this task.  But, not just in terms of riding the bicycle, he definitely seems more attentive to the icon exchange and makes great eye contact with his therapist.  For some reason, he would stare deeply into her eyes for minutes then burst into giggles and laughter.  There is something about this particular therapist that has piqued Luki's interest. This has not happened with other therapists in the past.

I nonchalantly commented to the supervisor, let's call him J here, that perhaps it is the new Charlotte's Web hemp oil I have been supplementing which may be contributing to his increased awareness and cognition.  Immediately, as his eyes widened, he wanted to know more and so I showed him the bottle and he asked to take a picture of it to show his supervisor and warned me that he will need to report me (forgot what government department it was, child protective services??) as this is a controlled substance with some THC in it.  A couple of months ago, I had shared with him that I was contemplating supplementing endocannabinoid oils for brain development and also possibly adding hippotherapy into Luki's curriculum in the summer.  All he stated at the time was that neither of these were evidence based and therefore had no significant proven efficacy nor actually have any clinical benefits.  He had never mentioned to me at that time that if I were to start the hemp supplement he would need to report me to his supervisor and to some asinine government department which purports to protect children.  Had he mentioned this then, I would have used more discretion in sharing this information with him, would have had second thoughts in starting the treatment and would have sought further information into the implications of using hemp products, especially for minors, in medical need.

I am feeling back stabbed and furious that he did not counsel me as such beforehand and now under the pretense of looking out for the best welfare of my son wants to see if there are any punitive measures to reprimand me for using hemp. I asked him what the repercussions of using this would be if the law deemed it illegal and he told me he had no idea.  Really?  What if it were that the parent goes to jail, gets a felony conviction for using a controlled substance hence making their chance of employment difficult and also have the child taken away under state's "protection"?  How would he feel if that were the repercussions?  I have lost all trust in this supervisor who has worked with us for almost a year now.  He just doesn't get it and it doesn't feel like he is on our team.  I need someone who is more sympathetic to our plight and willing to look into Luki and our family's best interest, not the interest of his job, Easter Seals and other institutions.  Does he really think I am intending to have my 4 year old smoke marajuana to get him high? He should know us better than that by now! Is he coming into my home to do surveillance on whether Luki is being abused, neglected, or is he coming into my home to ensure Luki learns ABA techniques to function and communicate better? Granted, he may be obligated to report such incidences according to the law. And, he is, afterall, just doing his job. But, so were SS soldiers who put innocent Jews into burning ovens during WW II in Nazi Germany. A more conscientious person would counsel better beforehand and inform us of their obligation to inform authorities and the repercussions that may follow rather than too happily stating that he "must report this" and when asked about the ensuring repercussions flatly state, "I don't know" (I thought I heard his internal thoughts saying "not my problem, I don't care"). Maybe I'm reading too much into this situation.

 For a while, I have felt J throws techniques and fancy ABA jargon around but is not really listening to me as if he always needs to have the last word.  Why hadn't he told me beforehand?  Right now he just seems like a jerk and and I am really working hard to control myself from speaking to his supervisor.  What stops me is I don't want to make this issue any bigger than it needs to be considering what a controversial issue it already is in the rest of the county.  Just look at what happened to this dispensary by the police and their flagrant disregard for the disabled woman in it.

Marijuana Dispensary Suing Mayor After Cops Raid Shop And Eat Edibles

 Yet, on another hand, I wonder if I am just being over sensitive and over reacting. My intuition is giving me mixed messages and I am stumped on how to proceed with this issue.  Better to wait until my temper cools to make any major changes.

Recently, in an expose, Former LA County Social Worker Reveals Corruption in Child “Protection” Services, a social worker from the Department of Children Services of Los Angeles revealed the corrupt nature of the department and how the best interest of the child takes last precedence over financial gain made by the department by placing children in adoptive services instead of trying to remediate the parents so that they can regain custody of their own children.  It is also common for the department to receive more federal money if children get medicated on psychiatric drugs and an alarming majority of children in foster care are on some type of psychiatric drugs.  A few years back, a 7 year old boy with homosexual tendencies was bludgeoned to death by his mother and her boyfriend and the social workers were negligent in protecting him.  And yet, a loving mother who out of desperation administers endocannabinoid oils for her sick child, whom allopathic medicine can no longer treat, gets sent to jail and her child taken into "protective" state custody.  In light of this expose, I am panicked about our ABA supervisor's attitude over the use of hemp oil supplement.  And, I am enraged.

As if the above didn't raise my blood pressure enough, I also had a visit from a representative from the IHSS (In Home Supportive Services) to see what, if any, benefits Luki would be eligible for.  She spent 30 minutes interviewing our needs and concluded we would be eligible for $5.00 per month on diaper changing duties.  You've got to be kidding me, give me a break!  I am really tired of all these "free" services that  seem more of a nuisance than help. I cooperate with getting assessments done through the Regional Center, IHSS, PT, OT, ST, ABA all because I have been made to feel it is the right thing to do and afterall, isn't early intervention everything?!  In hindsight, I am doubting the wisdom in all this.  The only reason I keep up with ABA is that it allots a set time for me to interact with Luki.  As far as I'm concerned, I am his primary therapist and the ABA person they send is just my aide and their supervisor gives occasional tidbits about the theories of ABA.

End of rant,,, Luki has woken up from his nap and I must attend. He has taken over the cat bed and likes to take cat naps on it.

Realm of Caring's Charlotte's Web Hemp Extract and what It Can Do for Us.

Recently, I purchased Charlotte's Web hemp extract through Realm of Caring, a company that specializes in producing medicinal marajuana products such as endocannabinoids.  The hemp strain used to extract the oil is the same as that featured in the Sanjay Gupta CNN special report on the medicinal uses of marajuana for seizure control.  It is a strain that is high in CBD content and very low on THC hence making it not so alluring for recreational use but extremely potent in its effect on neurogenerative disorders such as seizures, autism, cerebral palsy and other brain related disorders.  In fact, the product is named after a little girl, Charlotte, in the documentary whose seizures were almost completely reduced after taking the oil.  Anecdotal studies show it  helps in seizure control, tics brought on by Cerebral Palsy and  mitigates symptoms brought on by other neurodegenerative disorders.

No studies are currently underway to see the benefits of endocannabinoids in neurodevelopment in cases such as autism. I have relayed contact information for GW pharmaceutical's [a British company that currently supplies pure endocannabinoids for clinical trials at UCSF and New York University] public relations director to Dr. Gargus, director of the new Center for Autism Research and Treatment center at UC Irvine to possibly start a line of clinical trial studies to see its effect on autism.  I am not sure what he did with the lead; hopefully, one of his colleagues has grabbed the idea and is running with it.  Anecdotal stories of endocannabinoids having neurogenesis effects is the bit of hopeful information that led me to run out and get the hemp oil extract for Luki's Dup15q syndrome. 

I am quite surprised by how easily accessible it is to get this stuff.  I just ordered online even without a prescription from a "weed doctor".  This just goes to show how safe the product is and even with over dosage, there is no need to call poison control unlike most prescription antiepileptic drugs currently on the market. 

Mr.L is currently on day 3 of use.  I am slowly titrating it up from 5 drops a day to 10.  Recommended usage on the bottle suggests 30-40 drops a day, three times a day.  Not sure if this recommended dosage is for seizure control but I plan to just give 5 drops b.i.d. and see what, if any, cognitive progress he makes.  As for cost, the 200 mg bottle cost $50.  I have read somewhere that in order to get successful seizure control, $100-$600 per month would be the cost for treatment, depending on the patient.  10 drops a day may last a month or two. 

We are not seeing any effects, yet, of course, it is too early.  But, maybe in a week or a month, a light bulb will go off in his little head. Crossing my fingers and hoping for the best.  

Autism medical tidbits from a scrap of paper I found in my file.

I'm not sure where I got the information below but I had it scribbled on a scrap paper and tucked away in my Dup15q "research" binder. I think I was listening to a podcast on autism and took notes. I am writing it down here for safekeeping.

Things to do for constipation:
-Vitamin C 6 mg/day
-Aloe oils (good brand it miracle of aloe)
-Senna
-colace
-Avoid bar coded foods

Autism: an autoimmune disease?  A new perspective.  Check out New finding in brain immune system connection

Contraindicated meds:
-tylenol depletes glutathione by 21%
-depakote depletes carnitine
-Antipsychs such as SSRIs not recommended in children less than 7 years of age. (Read Anatomy of an Epidemic)
-statins deplete CoQ10
-"Beer for breakfast"??? Not sure why this was written down.
-cyclosporine (Not sure why)
-NO2 bad for those with seizures and mitochondiral diseases

Vaccines:
Watch greatergoodmovie.com  and Trace Amounts

MSS:
Master Mineral Solution/Miracle Mineral Supplement.  A controversial supplement that may do more harm than good?

HBOT: Hyperbaric oxygen therapy 
- helpful for mitochondrial disease
-reduces inflammation
-people with seizures and mitochondrial disease can benefit

Quentin hypertonic products:
a line of supplements that offers minerals obtained from the sea.
Good source of magnesium.

-IVIG used for immunodeficiency
-autoimmune diseases can lead to PANDA/PANS ( Pediatric AutoimmuneNeuropsychiatric Disorders Associated with Streptococcal Infections/ Pediatric Acute-onset Neuropsychiatric Syndrome)
Difference between PANDA and PANS

More Questions

In Numbers 13:32 we see that 10 of the spies spread a bad report full of exaggerations. Do we as special needs parents fall into that same trap? What is the result when we do? How does that affect those around us?

Yesterday we started looking at the account of Joshua and Caleb and the spies from Numbers 13-14 as it relates to our study on having a Godly perspective.

Read Numbers 12:31-33
Notice in verse 31 that some of the spies say "We can't....". Do you ever find yourself saying "Our special needs family can't....", "I can't....." or " My special child can't....."? What causes that hesitation to do certain things that in reality with God's help we could do?

I really enjoyed reading all of the comments in the group yesterday. If you have not had a chance to join in the conversation, I hope you can today.

Here are some things to think about today as we continue looking at our thought life and how we can have a Godly perspective as we raise our children with special needs.

If you are honest with yourself, would you say that you are more of a pessimist or an optimist? Do you tend to dwell on the negative or the positive?

Read Philippians 4:8. Make a list of all of the things this verse tells us to think about. How can thinking on these things help us change our perspective on the challenges we face raising a child with special needs and as we face our daily life?

Today we continue to look at how our thoughts affect our perspective in a positive or negative way.

Do you struggle with negative or destructive thoughts? When you have those thoughts what do you tend to do?

Read 2 Corinthians 10:5. What does this verse tell us to do with the thoughts that come in our mind? What do you think that means? How can taking our thoughts captive affect our perspective?

What a great week on the "Flip-side"! There were some wonderful suggestions this week on how to "guard our thoughts". Here are just a few.
1.Pay attention to what we watch, read and listen to.
2.Memorize scriptures to remember when your thoughts start to go to the "dark-side".
3,Spend time each day reading God's word and praying.
4.Play Christian music when the negative thoughts start to invade. 
5.Start replacing negative comments with positive.

Another important way to keep a Godly perspective is to be in community with others. So many times special needs families feel isolated, all alone and like no one could possibly understand their lives. At Rising Above one of the most effective ways we have found to creative community is by becoming involved and engaged in one of our Connect Groups. Connect Groups are small groups of special-needs parents who meet together regularly, for community, Bible study, and to encourage each other. Currently our Connect Groups are only available in the southern United States but we anticipate expansion. In fact, you may be feeling led to start a Rising Above Connect Group in your own community. If you want to talk further about what that might look like in your area contact me at bdavidson@risingaboveministries.org Meanwhile here is a video that shares about our current Connect Groups.https://www.youtube.com/watch?v=gEMIUOooboc

Miscellaneous Information to Consider this Summer.

Waldorf homeschool curriculum
This year, we opted out of summer school offered through the school district to try something new.  I am hoping to "home school" Lucas with the Waldorf curriculum.  It is a non-rigourous curriculum which I plan to use to increase his awareness of changing rhythms in the environment as well as his every day schedule- after all, that is the main goal of early Waldorf education.  I plan to incorporate lots of time outside (better get him used to wearing his hat even though he hates it), "help" around the house with chores (or at least try to include him), bake cookies, wash dishes, do laundry, etc... I am not sure how much of it he will absorb, but it will be fun spending time with him and I hope to get the ABA therapist on board to help me out.  If nothing else, the therapist can ensure his safety during the activities.

Why I Left ABA from a therapist's point of view.
I found an interesting article written by an ABA therapist on why she left ABA.  She found the process very abusive to her clients and corroborates her view with first hand accounts by adult people with autism who share how very abusive and tortuous the method was for them growing up. William Stillman states, "...there are precious few, if any, adult self-advocates who joyfully espouse the childhood rigors of systematic programming, and I haven't yet seen any studies that demonstrate how this programming builds esteem and mental wellness into adulthood."  It is, of course, the only "evidence-based" method to produce significant results hence only method covered by our insurance.  True, but I am sure chinese water torture would also be just as effective in getting wanted behaviors, but would that be the most humane and best way to get compliance? I think not. Besides, no studies have been done with adult individuals with autism the impact ABA had on their emotional well being.

Our ABA is more play based than the traditional version of a decade ago.  As always, I keep an internal Luki's "happiness gauge" with any activities and therapies and if the reading is on the low side, I am quick to stop whatever it is we were doing.  As William Stillman stated in his book Empowered Autism Parenting, "Too often, parents are conditioned by the autism industry to become overly dependent upon autism therapy because of the messages sent by the autism industry that more is better and that your child is broken and needs to be fixed, now. Yet, many children scream, kick, or cry during treatment or therapy,  If this happens, parents should intervene immediately and if it happens more than once, cease doing it!  Your child's "autistic behaviors" aren't behaviors at all - they're communications, communications that something is very wrong and why aren't you coming to my rescue, Mom!"

There are other drawbacks to the method, too as William Stillman elaborates here:

      In examples I've observed, the ABA professional, seated across from the child, holds up a flash card of, say, a cow and prompts the child to identify ?cow" until he does so correctly and often enough to be considered to have mastered the skill.  Negative responses, tripped by "behavioral triggers," are identified and modified in the environment or discouraged in favor of positive reinforcement.  The positive response of the successful child may be rewarded with verbal praise, a food item..., favored activity, or toy.
      Sounds great, right?  The only problem is, as noted, that's not how most persons with autism think, learn, process, and retain information, let alone possess the capability to transfer what's learned in ways that are functional and appropriate.  And if it sounds similar to what Pavlov did with dogs you're not far off base, though what thrills many parents is behavioral compliance - their child has been conditioned to suppress his autistic traits long enough to be less of a "behavior problem" and to outwardly present as "normal" But compliance for the sake of obedience does not equal success. It means someone has been conditioned to reply by rote.  Further, we've disempowered parents from parenting.  We've supplanted their ability to develop a relationship with their own children by dictating that a professional, previously a stranger to the child, is solely qualified (and required to be so) to interact with their child for hours on end. ....
     If you want me, as the one with autism, to learn "cow" help me learn it naturally in the context of a mutually respectful, reciprocal relationship that  makes it interesting, pleasurable, and intellectually stimulating to learn,  If you want me to learn "cow", show me a cow.  Take me to an open pasture and introduce me to cow; or at the least, let's learn about cow together, parent to child, by reading age-appropriate material, watching video of cows, and creating recipes using the food produced by cows,  This is the type of quality interaction that those of us on the autism spectrum record for safe-keeping and replay years later as a pleasing recollection.

,,,And THAT is why we are doing Waldorf this summer!.

school for autism and developmental disabilities.
I found a school started by another parent with Dup15q Syndrome in the inland empire.  I think the school just opened. Will need to look into more information about this school.

Ketogenic pill to treat drug resistant epilepsy
Brilliant new idea for getting the benefits of a ketogenic diet without actually having to sacrifice eating carbs.  This drug sounds like an enzyme blocker to shunt carbs broken down from the anaerobic pathway away from the TCA cycle and directly into the lactic acid pathway. But of course! From what I can recollect during my biochemistry days, I think it would be 2 pyruvates per glucose molecule shunted to lactic dehydrogenase or the fat anabolism pathway. The person taking the pill would need to drink a lot of water to hydrolyze the stored fat.  This could be a possible cancer therapy method as it would starve cancer cells of sugar which they love.  Will be keeping an eye out for this in the future.

horse therapy for the disabled.
Summer is going to be filled with swimming lessons (by me), horse back riding therapies (click above), bicycle riding and Waldorf School for all Seasons curriculum along with floortime and ABA. The equestrian center stated that 30 minutes once a week is the schedule for summer but I'm not sure if Luki will be able to handle being on a horse for 30 minutes straight.  Just look at his interesting exit strategy on a merry go round.

I can see him trying to get off after 10.  Gabe and I are going to take him to a pony ride in Griffith Park to see how he handles horses and whether he will freak out.

Epdiolex clinical trials for intractable epilepsy at UCSF
Epdiolex, pure CBD oil with no THC, has now been included in a clinical trial at UCSF.  Our stingy neurologist told me about this today.  I ordered 200 mg of charlotte's webb extract in MCT oil for $50.00 yesterday through CW pharmaceuticals without even a note from a marajuana doctor.  The email invoice I received states it has been shipped already...Wow, it has become so easy to get hemp products now which is great, but I worry still about the THC in the mix as it can cause adverse effects such as sleepiness, weight gain, mood disturbance...No studies have been conducted to show its effects on autism or neurodevelopmental delays, but I am optimistic about its neurogenerative capability to help with brain development.  Not sure what dosage needs to be given as no studies for this purpose has ever been done.  I am thinking maybe 1 mg a day as a low maintenance dose for him and see where this goes.

New type of seizure detecting watch called Embrace.
We just purchased this new and upcoming product which purports to detect seizures and stress levels in people prone to epilepsy.  Not sure if Lucas actually needs it yet but I have noticed a handful of time when his eyes were blinking rapidly under his close eye lids.  I mentioned this to the neurologist today and he thinks it is highly unlikely that what I witnessed was a true seizure (his eyes being closed made him think so).  But, one never knows when, or if,  it will happen and I would like to be prepared.  I asked for a letter of need from the neurologist today so that we can get reimbursed from our healthcare reimbursement account since Kaiser doesn't provide such a device.  He said he would not do it because Luki has not been diagnosed with epilepsy.  Really? Jeez, why can't he just work with us?  What harm would it do for him to just write a little note stating that it may help us with monitoring him? We are paying for it with our own money which we set aside.   I am seriously considering changing neurologist.  He seems just too uptight, rigid and not thinking outside the box for my comfort.  I asked our pediatrician for same said letter and she said, "sure, will send it out in the mail today"..

Our 5 Year wedding Anniversary Lunch Date Disaster.

Today, Gabriel and I celebrate 5 years of happy matrimony.  We thought we'd take some time out for ourselves so Gabriel took the day off from work and made reservations at the fancy steakhouse in downtown, Pacific Dining Car.  While Luki was at school for three hours, we would escape to have a wonderful lunch, reconnect and have some one-on-one time then pick up Luki at school around 2PM before heading home.  At least, that was our original plan. What actually took place is something quite different but not so out-of-our ordinary crazy routine.  

So this is what went down.

I awoke around 8:00AM to sounds of Luki's stuffed up nose- he has caught another bug at school and slept poorly.  I awoke a few times in the middle of the night to spray saline up his nose and apply vick's gel around his nose and neck with him kicking and screaming. I'm not sure if my interventions helped much as he kept kicking my back and rolling around all night.  Gabe told me to sleep in this morning and he would take care of breakfast for Lucas and work with the ABA therapist when she arrived to make up a session.  Thank the Lord for Gabriel!  I was able to sleep more and even got to take a shower and do my hair and make-up - a rarity when I am alone with Luki; ususally, I try to sneak in a shower when he is at school.  Most mornings, we have therapy at 8:00 or 8:30 and we start off with feeding skills so I have no time for myself.  Today, the therapist was a no show with no text or a call to let me know why. This has never happened.  I left a message with the schedulee to see what happened but never got a return call.  Whatever.  Today, we celebrate and I'm kind of glad she didn't show up.  More on our therapy progess on another blog.

So, I put on the dress I wore to our engagement shoot at the Disney Concert Hall 5 years ago and was glad it still fits me, although a bit tighter and shorter now!  After our engagement shoot, we went to have dinner at the same restaurant and thought it would be nice to kind of recreate the scenario and see how much we have changed over the years.  Today was the first time I wore the dress in 5 years and once I put in on I got a faint whiff of the perfume I used to wear back then and it automatically brought so many memories from the past.  It was a lovely feeling.

We buckled Luki in the car seat and headed to school.  Once we arrived, we found him sound asleep.  Oh well, I guess no school for today.  We would need to head back home and wait for him to wake up then take him with us to our lunch date. We changed the reservation time to an hour later and around noon, we headed to the restaurant.  Luki was calm and quiet in his car seat and I prayed he would be so during our meal.  But, it was another story once we sat at our table.  He was whiney and fussy at first, then went into his full blown ugly, loud cry.  He refused to sit on his booster chair and was clinging to me for dear life.  The people near our table were watching us and a bit annoyed.

 Crap, I sort of expected this to happen.  He isn't feeling well and he wants more sleep.  So, although we ordered a lovely meal, we took turns taking him outside and as usual, one of us eats a cold meal.  Luki was fine when outside but immediately as we entered the restaurant, he started crying.  Gabriel took him out first so that I can eat the restaurant's famous "baseball steak", baked potatoes and grilled asparagus.  We had planned to share a coffee and chocolate cake after our meal but fat chance that was going to happen now.  I had to stuff my face quickly so that I can relieve Gabriel for his turn to eat.  I heard of another mom who experienced a similar situation which made her silently cry alone at her table while her husband was outside placating their intellectually disabled son.  All I felt was furious anger and all I really wanted was a punching bag at that point.  We took some fish and scallops Gabriel ordered with the baked potatoes in a to-go box and I fed Luki outside the parking lot under a tree on the side walk while Gabriel finished his meal alone.  Luki seemed happy, ate most of his food and was smiling and laughing.  It's strange how all that anger just dissipates when I see Luki so happy.  That is all I really want for him.

So, yet again, another crazy, unpredictable day in my "special" life.  Happy 5th Anniversary to us!