During last Sunday's Journeys meeting, the facilitator asked us what hope looked like in the midst of going through "the valley". Many families have children with dire medical needs such as uncontrolled seizures, hypotonia, learning delays, autism, etc that place a heavy strain on the family dynamics such as the added physical burden that can lead to emotional/psychological fatigue. I couldn't think up an answer that seemed "hopeful" at the moment but I pondered this question for the rest of the day and finally came up with an answer that seemed satisfying to me. Sometimes, I wonder where these answers come from - is it me thinking them up or is it Spirit infusing its loving knowledge for me to take. The answer I received is that hope rests only with how I react to the situation. Precious energy can be wasted trying to change what God has appointed upon my family's life. What I hope for the future is that I will be a good, loving and positive motherly presence in the family. I am inventing what a "motherly presence" is as I go along since I have never had such growing up.
I can only control my reactions to the whirlwind of events that unfold before me. I have no control of Luki's medical condition, whether he will ever have seizures or even if he will ever talk. I can pray for the best, but God has the ultimate hand in the situation. I can only pray that God reveal to me the deeper meaning -His good will- in the situation and steer my family toward the Light.I can become despondent or I can tune myself to a higher vibration of energy - and for that, I need God and the heavenly realm to lift me up to that state. I can't get there on my own. So, that is my hope. I am hopeful that I have enough spiritual maturity to recognize the importance thought and attitude plays in shaping a future reality.. I also hope to always stay at that level of awareness and that this knowledge will translate into carrying me and my family from the pitfalls of despair to true spiritual wisdom and intimacy with God. I leave the details of how this would be achieved up to God and the angels who surround and protect my family.
As written out in our IEP, Lucas has 2 hours of summer preschool Monday through Friday. At first, he cried and fretted and I was so worried to leave him alone';but according to the teacher and the 1:1 case worker, he had a great time. It's been two weeks now and every time I drop him off, he doesn't seem clingy nor scared to be separated from me. He just goes right along with his teacher into the classroom. Actually, wheeled in to the classroom in his stroller - not because he can't walk yet, but because it is hard to guide him to walk in the direction I need as he still does not like to hold hands while walking and seems confused about what is expected of him every time I try to guide him with touch. I tried the toddler Rifkin walker we used since he was a little over one year old, but his little legs give out and they refuse to walk. So, to make things easier on all parties, including Lucas, the stroller works best. I have written our pediatrician about getting a special needs stroller and diaper coverage through our insurance and she has written a prescription for them. I am still awaiting a call from Kaiser to see if these are included in our benefits. It would be great if we just get coverage for the diapers. Lucas tends to stick his feet on the wheels of his stroller making it stop every so often and this is why I am requesting a special needs stroller. I hope we are able to get these. The MacLaren special needs stroller alone costs over $600.
Here are some pictures from his first day at school.
As I remember from the days at Centro, Lucas can't sit in regular chairs so I have the teacher use his beach chair in the classroom. It seems to stabilize him more. The occupational therapist at school said that the chair is not helping with trunk support and posture so they ordered a special chair just for him. I remember these plastic chairs with high sides that also turn into tables when placed sideways. He used to slip right out of them but I am hoping he is able to sit in them now that he has better upper body support. He used to sit in his Rifkin chair which had a center pole between his legs so as not to slip down.
Aside from being a better sitter, Lucas has become quite the climber! He climbs everything now - the stairs (still on all four), the dining room table, his high chair, onto the car seat, sofa, etc.. anything he can climb, he will. He still doesn't seem to have much danger awareness so now I have to watch him like a hawk and be on my toes at all times. I just look at the sofa forlornly and reminisce the times I used to just lay there and watch T.V.
He is making strides in other areas, too. One day, I blocked his entry into the bathroom by standing in front of him with my legs open. He got on his knees and crawled right between my legs and went straight for the bathroom sink! Now, that is a thinking brain! He shows much more control and dexterity when playing with his toys, too. Even though the toys he has are the same since he was less than one, he always seem to be discovering different aspects of the the toys every day and so doesn't get bored with them .
In about a week, Lucas will be participating in his first ever clinical trial on Dup15q Syndrome at the UCLA center for autism under Dr. Shefali Jeste-one of the clinicians for the Dup15q Syndrome with collaboration with Dr. Connie Kasari, a behavior intervention specialist. Dr Kasari's research interest include :
Social-emotional and cognitive development in atypical children
Randomized control treatment studies of social and communication behavior in children with autism
The actual study is a cognition and communication study that involves a three hour questionnaire. They are also offering us a 12 one hour sessions of behavior intervention free of charge for participating in the study. I think this will be good for Lucas and I am hoping for some improvements in his cognition and awareness after the intervention sessions. The below is information about the study taken from the Dup15q website.
Cognition and Social-Communication Function in Children with Dup15q Syndrome
DUP15Q AND AUTISM
Children with 15q11-q13 duplications are at high risk for neurodevelopmental disabilities, particularly autism spectrum disorder (ASD) and intellectual disability (ID). The UCLA Center for Autism Research and Treatment (CART) is a leading center for autism research and has been named one of the three national Autism Centers of Excellence. Studies in CART have been focused on defining clinical subgroups within the very heterogeneous autism spectrum in order to design targeted interventions that are tailored to the specific needs of each child.
What is the purpose of the study?
This study combines the clinical expertise in ASD and ID of Dr. Jeste with the intervention expertise of Dr. Kasari to comprehensively and systematically characterize cognitive and social-communication function in children with dup15q syndrome, using standardized behavioral testing, play-based assessments, and EEG. The overarching goal is to determine if there are specific areas of strength or impairment that may serve as targets for behavioral intervention.
The study will involve approximately 3 hours of testing, including parent questionnaires, behavioral evaluations of the child, and a 20-minute high-density EEG session. We will provide each family with written and verbal feedback on the behavioral testing. Furthermore, a subset of children will be entered into a pilot behavioral intervention for social-communication function for a total of 12 one-hour sessions. The intervention will be conducted under the supervision of Dr. Connie Kasari, a leader in intervention research for infants and children with developmental disabilities.
My precious Lucas is getting cuter everyday. He is also getting bigger and heavier, too. I can't believe how fast he is growing up but I still see the face I saw the first night I held him in my arms. Much to think about in terms of getting him a sibling. Now that he will be starting preschool, it may get a bit easier for me during the day and perhaps I can also conceive - God be willing, I feel this needs to happen for the sake of the family and especially for Lucas. The family just doesn't feel complete with just the three of us. During dinner time, I always feels as if there is someone missing. However, I worry about how the burden of being a "caregiver" would be unfair to the sibling. Will he feel ashamed of his brother's condition? Will he resent is responsibility? I don't want to impose too much on him and I pray to God that I will have another child only if he provides for the best opportunities in education and social connections for him/her. I told God that I would not have a child otherwise. It would break my heart so. He/she will be loved so much. I love him/her already.
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