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
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"..
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!
On May 19, 2015, little Luki turned 4 years old. How did that happen? I made a slideshow of pictures from the previous year and can see how he has grown taller and more "alert". As each day goes by, it feels as if he is slowly waking up as if from a deep dream and he gains more awareness of his surroundings. We notice it in newborns as they explore their surroundings and within a year their consciousness seems already established. Lucas just seems to be taking his sweet time in getting to that place. He is quite the climber and runner now and I can almost predict some accident is bound to happen in year four. Better to watch him like a hawk now. He is a lot of work and worry but I see also how much joy he has brought into my life. As I blew out the birthday candles, I wished for him to gain speech this year. Even just one word... mommy would be nice but so would loveyou. OK that's two words.
This year, we debated about whether to throw a birthday party or go to Disneyland for a day. It is too expensive to do both and we decided to throw a party and invited all our Journeys families with their special needs children and their siblings to Lemontree Kids Cafe in LA. We decided to defer Disneyland to maybe next year and told Gabe's brother about our plans. As a birthday present, Mike sent us a Disneyland gift card to cover 3 admission tickets. I just about cried when it arrived in the mail and feel so grateful for his generosity and knowing Lucas has a wonderful uncle on his side. Wish he lived nearer to us so that Lucas can spend more time with him and his cousins.
We had a great time at the party and Disneyland. Lemontree used to be Luki's hangout whenever we were out in LA and we used to eat lunch and play there after our clinical trials at UCLA with Dr. Jeste just so that we can wait out the traffic hell back home. So we didn't have to worry about meltdowns and anxieties in new, crowded and noisy places. Lucas also did great at Disneyland with no meltdowns, Last time we went, he napped for two hours and we rode very few rides. This time, we got on most of the rides in Fantasy Land. He loved It's a Small World and so did Gabe. Gabe wanted to ride it twice, lol. No way was I going to get that song stuck in my head for a week. Besides, the lines were getting too long. Lucas did fall asleep in the submarine ride, but he slept for only 45 minutes - a good amount of time for Gabe and I to have a snack. This time, we packed snacks (yogurt, fruits, crackers) to save money as advised by our ABA therapist who goes often with her son with a season pass. Gabe initially did not want me to take food, maybe because he would feel embarrassed if they confiscated it at check in. But, I think he was grateful I brought them. I did order the fried chicken at one of the restaurants near Main Street and wow, fried chicken never taste as good as when you are mad starving! Quite a memorable meal, more so than the $100 lunch we had at Blue Bayou last time we were at Disneyland. The highlight of Disneyland was when Luki gave Goofy a kiss on the nose with no prompting from me. He gets it!
Late at night, as Luki and Gabe are fast asleep upstairs, I watch the above videos and get a warm feeling within and get teary eyed, too. Life can be beautiful even if it's not perfect but only if you make it so.
Last Sunday, as a church-wide commitment to support families with special needs children, a sermon was given by Pastor Ken to show support for these families in the Faith Village community.
Also, a representative from Rainbow Acres, a group home for adults with intellectual disabilities, came and spoke about their facility. I was blessed and encouraged by this Sunday service which is also made available as as an mp3 file below.
The two main sermon points addressed were the how and why of dealing with special needs. When a family initially gets hit with the news that a child will not develop typically or is medically fragile, the first question that arises may be why this has happened, later to be followed by the question of how to cope and deal with the disability. But, more so than the how of living with a disabling condition, what has been more enigmatic to me is the question of why. Buddhists believe in the idea of karma, a system of cause and effect as a way of explaining why good and bad things happen to people. If one has done good deeds in life, then "good" karma follows that person and that person is blessed with lucky and auspicious events, and vice versa with "bad" karma. However, I am not so sure how appropriate it is to use this cause and effect explanation to counsel a family devastated by a child with special needs or complex medical conditions. Bad things happen to good people and to say that perhaps a sin committed 5 lifetimes ago is now manifesting as one's "bad karma" does nothing to offer compassionate encouragement for this family. Likewise, humanity over 2000 years ago asked Jesus a similar question in John 9 of the bible:
Jesus Heals a Man Born Blind
9 As he passed by, he saw a man blind from birth. 2 And his disciples asked him, c“Rabbi,dwho sinned, ethis man or fhis parents, that he was born blind?” 3 Jesus answered, “It was not that this man sinned, or his parents, but gthat the works of God might be displayed in him.
This is why I love Jesus so much. He makes people look beyond the cause and effect (a very worldly view) to explain tragedies and look to the greatness of God in ALL situations whether good or bad. Jesus says it is nobody's fault why a disability is visited on a family - not the person affected nor his parents! God did it so that goodness can come of it and as a result have God glorified. What does it mean to have God glorified? To me, it means that the world lives in peace and there is no fear, anger, hatred. It means that people like my son is accepted, loved and esteemed as another aspect of God's many manifestations. God is glorified only as a result of the magnanimous choices made among humanity in how it accepts and treats the weak and disabled...but also anyone who is hurting physically and emotionally and well, that just about covers everyone alive. God's greatness is only made manifest when humanity views all beings- disabled or not- with compassion, acceptance and sees them as a different and unique aspect of God. God doesn't force His Will onto humanity, it is a choice made to either magnify Him or reject Him. So many violent world events like war, occupations, genocides, urban crimes, riots I see in the news everyday sometimes leads me to belief that humanity has chosen the latter. But, then there are heartwarming stories of amazing souls who work for the betterment of mankind and it leads me back to hope. I desperately need to hear more of the latter stories than the former to keep me going and continue to have hope for my son.
In the sermon, Pastor Ken states that the understanding of why God did this doesn't take away the pain. It's true. But, if I had a glimpse of heaven and all the machinations that go on up there which set the scene for all the things that happen on Earth, especially why my son is born with an intellectual disability, and knowing God works all things for good, I may be overjoyed all the days of my life! There must be some mysterious reason why God doesn't reveal everything while we are in the flesh so the only comfort I take is knowing that God is with us and He is for us. The question I am now faced with is, is that enough? Is God's love and presence with me enough to compensate for the possibility of encountering harshness in this world, especially with a disabled son? I have the rest of my life to unravel the answer to this question. With time, I hope to understand the depth of what "God is with us and God is for us" means as I journey with Lucas and Gabriel on our special lives together.
John 16:33New International Version (NIV)
33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” Pastor Ken has introduced me to a new favorite vocabulary word "eschatological". It means that it is only in the end times that all will make sense. Yes, eschatological, indeed.
Last Sunday at our Journey's meeting for parents of special needs children, we discussed the chapter in the book, Another Kind of Courage , addressing the challenges of keeping the marriage covenant when a special needs child shares in the dynamics between a couple. Honestly, a short chapter in this book doesn't do justice to the topic, someone should write a whole book on it. We discussed how different styles of communication between a man and a woman can sometimes lead to miscommunication or no communication at all, leaving spouses feeling unsupported and unheard. Gabriel shared how when he was young, his father told his brother and himself that it is not good for a man to be of many words; it is man's actions that count more that "lip service" with empty promises. It's true, Gabe's dad is a man of very few words and I can see how this trait has been passed down to Gabriel. I appreciate how Gabe so responsibly takes care of the family with all the little and important things that need tending as well as helping out with Lucas and I know he cares for me, too. I don't take any of that for granted and am so grateful for his steadfast character. And yet, at times, I have felt that something was amiss and could not quite put my finger at something off-kilter in my emotional landscape after Luki's diagnosis. Sunday's meeting has somewhat clarified what I could not understand on my own.
And this is what happened.
So, I shared a story of how Gabriel can be a man of few words, It was last month when I got new curtains for the kitchen and waited for an acknowledgment from him when he came home from work. I waited and waited when he said nothing and I thought he must not have noticed (how could he not? They are covering most of a wall in the kitchen?) Finally, when I asked about how he likes the curtains he just said, "they're nice". Had it been me, I would be asking all sorts of questions from the shade of color, to the material and cost. It just wasn't an important enough topic for him to talk about. It also opened my eyes to how much more he notices, feels and experiences internally - things that he may not verbally share with me. OK, fair enough about something trivial as the curtains but what about when you find out your child has special needs?
We have both grieved. And yet, my memory is remiss in recounting how Gabriel has grieved in his own way until another parent pointed out that Gabriel cried in our first Journey's meeting over a year ago. Hopefully, I didn't come off as someone self absorbed about my own suffering and that Gabe and I are having marital problems, lol! How is it possible that I can recount the sadness I felt these past 2 years and yet not be able to see the same kind of pain Gabe was experiencing? It came back to me that he, too, was in pain. That nagging feeling that something was off kilter in my mind was in fact, the sense of being lonely because I was grieving alone. And, so was he. I wonder if he felt lonely as well. Perhaps it's a cultural trait among Asians to be more stoic and reserved with emotions. I don't think Gabriel and I ever sat together and cried over and discussed the situation, heart to heart. Which is why I remember being somewhat shocked when he cried in the first Journey's meeting. No one can teach or tell another person how to grieve. It is so individual and I'm learning we do it alone. What's important is to walk alongside the person and just be there when they need you. Hopefully, grieving can be a positive avenue to emotional health and we can go through it without falling into unconstructive escapes - God knows there are so many from alcohol, drugs, shopping, working too much, social media, facebook (my own weakness).
As we walked home after the meeting, I apologized and asked if I made him uncomfortable for putting him on the spot during the meeting and whether he felt thrown under the bus. He just laughed about it (so love how he has a thick skin) and we vowed to try praying together at least once a week as a way to check in with each other.
As I was surfing Facebook the other day (I know, I know), I came across this man belong. Not sure who he is or even what religion he represents. But, I love his funny, simple and practical answer to the question of, "How do you make a marriage work?"
