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< My Thoughts > Under more of 'What to do while you're waiting for the Day of Diagnosis'...
Just so you know what others have faced, and that you are not alone… here are a few focused excerpts from my Extended Reviews with < My Thoughts > by Sara Luker.
Please go to my Webpage Menu (3 little horizontal lines in upper left-hand corner of the webpage screen) for all each complete Extended Review with References, by book title; where you will also find Links to Amazon to view all books, if you wish.
A ‘Reposting’ of portions from…
Doctors, Diagnosis,& Denial
< My Thoughts > "While You Wait..."
Parents often must wait days, weeks, and even months for assessments or doctor appointments. During this stressful time, it's good to feel that you are actively helping your child. This can become an important time of clarifying what bothers you the most about your child's perceived needs, observable behavior, delayed development, or other concerns.
Video recording (using phone app) what you are seeing and how your child is acting throughout the day/night. 'Seeing is believing' for someone new to your child. Prioritize, try new things that are non-invasive and see what works and what doesn't. This will also help you find out what your child responds to. Some learn best by hearing, seeing, or doing.
Eventually, you will have to choose from available programs, therapies, and services that will be offered to help your child. Some are quite expensive and require a heavy commitment to begin with, so try to understand your child well enough to help others figure out what will probably work and what won't. You can only know this by trying a few things on your own, first. In this 'page' I’ll give you some ideas on where to start to discover who your child is 'behind' the autism.
More of... < My Thoughts > by Sara Luker
So perhaps you won't feel alone, I would like to offer several Focused Excerpts of real-life experiences which some families have gone through. These are excerpts from the Extended Book Reviews on the website. The whole Extended Review and LINKS to Amazon.com are also available for you. Enjoy!
Excerpts from the book – (5% indicates location in the Kindle version of the book, instead of page numbers).
5% Greg became obsessed with Sesame Street. When he was one-year old, he did thirty-piece puzzles. The new baby next door couldn’t do anything except eat, cry and play with a rattle, but not Greg. Clearly, he was brilliant.
5% He had some quirky behaviors that we explained away easily. His repetitive play confused us as much as it entertained us. After all, how many children stayed at a task for hours?
I faithfully recorded each new word in his baby book and according to our pediatrician, the same doctor that Jay had as a child, Greg was developing normally. I don’t know how Dr. Karp ever came to that conclusion since Greg screamed through every appointment.
< My Thoughts > “…screamed through every appointment.”
Major, et al. (2013), brought light to the fact that “…there has been little focus on improving ASD education during pediatric residency.” This study was to evaluate the curriculum that was out there regarding autism. They found a promising one teaching future doctors these 7 case-based modules –
1. Early warning signs of Autism
2. Screening for Autism
3. Communicating concerns: Screen & diagnosis results
4. Making an Autism diagnosis
5. Early intervention & education
6. Treatments for Autism
7. Autism-specific anticipatory guidance
In the conclusion, the authors stated that most pediatric residents felt training was important to their careers, but that “the current program was inadequate” and furthermore, “rated their competence regarding ASD as poor.”
Gonzalez, et al. (2015) offered a study which was designed to show how children with disabilities improved over time with early intervention. Instead, they discovered the there was a huge disparity between white children being treated and the treatment of ‘ethnic others’.
Among the reasons they gave was the family’s lack of access to traditional medical services or health care providers. Another was that pediatricians were not always (hardly ever) trained to become familiar with early identification and referral practices available in their community. Also, that there seemed to be a lack of health insurance recommended/accepted healthcare providers, in spite of the Individuals with Disabilities Education Act (IDEA) Part C stating the families are to receive services regardless of their ability to pay.
Some pediatricians, it was reported, took the “wait & see” approach to developmental delays they recognized in the patients that they did see. And, one of the reasons was that they didn’t know where to refer them next. Also, in the rare cases where they found doctors who did identify and refer children they suspected of delays, the parents did not want to follow-up, for whatever reasons. Often times, it was because the healthcare providers available to them didn’t look like them. In other words, there was very little cultural or ethnic diversity out there, to chose from for families with that additional concern.
6% Greg looked so normal when he was little.
People started to stare the older he got. It wasn’t so cute anymore to see Greg have a conniption in a store.
REFERENCES used here:
Gonzalez, E., Summers, C., et al. (2015). Developmental Surveillance & Referral in a Traditionally Medically Underserved Border Community; Maternal Child Health; V19, p2323-2328.
Major, N., Peacock, G., Ruben, W., et al. (2013). Autism Training in Pediatric Residency: Evaluation of a Case-Based Curriculum; Journal of Autism & Developmental Disorders; V43, p1171-1177.
A Child’s Journey Out of Autism:
One Family’s Story of Living in Hope and Finding a Cure by Leeann Whiffen; eBook 2009 Edition with < My Thoughts, by Sara Luker >
Excerpts from the book – (11% indicates location in the Kindle version of the book, instead of page numbers).
11% As we get to the park, I unbuckle Clay from the stroller, holding onto one of his arms. He manages to jerk free and runs full speed toward the road. He darts in front of a car, narrowly beating the front bumper. I sprint after him.
< My Thoughts > “I sprint after him.”
Thompson (2012), comments that among the most challenging behaviors of children with autism is that of dashing out in all directions in order to escape, avoid, or just for the adrenaline rush of running. This is where I would be yelling in my best ‘Thomas’ voice…“Stop, the signal is up!”
16% Finally home, I hurry to the den and turn on the computer. I place my fingers on the keyboard and type “AUTISM”. My pinky finger hangs over the Enter key. My fear has a definition. I am afraid of what I might find.
17% That evening, I go to bed unable to sleep, I go back downstairs. I force myself to look at the “Signs & Symptoms” checklist.
- Inappropriate laughing and giggling. CHECK!
- No real fear of danger . CHECK!
- Apparent insensitivity to pain. CHECK!
- May not want cuddling or act cuddly. CHECK!
- Little or no eye contact. CHECK!
- Difficulty expressing needs. CHECK!
- Not responsive to verbal cues. CHECK!
- Sustains odd play. CHECK! CHECK! CHECK!
- Inappropriate attachment to objects. CHECK!
- Insistence on sameness; resists change in routine. CHECK!
My eyes filled with tears as I looked at this description of my son on the computer.
24% Dr. Coates tells us, “You are fortunate to have caught this at such a young age.”
25% “I feel venerable. Now it’s real. There’s no more hiding behind ignorance or denial…”
A part of me withered away today as the formality of the diagnosis crushed my dreams for Clay and what he could become – the barometer from which all parents measure their own successes and failures. How did this happen? I search myself…
28% “I want to know what is at the root of Clay’s autism.” Once home, I head for the computer and immerse myself in research once again. I’ve heard about a Dr. Jepson… maybe he can help Clay.
35% We play with Clay in the waiting room until the nurse calls us back. Dr. Jepson stands to shake our hands and says hi to Clay as he pats him on the back. I’m taken back by how young he looks. He begins by walking us through the biomedical approach to autism using a PowerPoint presentation on his laptop.
36% Dr. Jepson’s Power Point Presentation –
Autism is a complex metabolic disorder that involves multiple body systems:
It begins with genetic susceptibility coupled with an environmental insult of one kind or another.
37% A combination of insults on a fragile immune system. “Because of their diminished immune system function many children more prone to ear infections, eczema, and sinusitis. Most of the time antibiotics again are prescribed to treat these illnesses, further exacerbating the problem.”
I look at Dr. Jepson in disbelief. “Are you telling me Clay’s autism could have been a result of any or a combination of his vaccines, multiple rounds of antibiotics, extreme constipation alternating with diarrhea, ear infections, red cheeks, ears, and nose?”
He recommends some lab tests, including a hair analysis, urine organics acids test, Complete Blood Count (CBC), RBC minerals (measures nutrient mineral levels vs. toxic mineral levels), liver panel, and a thyroid function test. He also recommends placing Clay on a strict gluten- (wheat) and casein (milk) free diet. In addition, there are supplements he recommends for Clay.
< My Thoughts > "...and a thyroid function test."
It seems that I always have to remind Sonny's doctors to do a thyroid function test. Don't hesitate to bring this up with your clinician, because a well functioning thyroid is critical to everyone's health, as it affects so many other functions. Insurance companies may not always want to pay for this test more than once, but sometimes it needs to be monitored as the child or adolescent develops. Just saying.
37% “Sean,” I say on the way home, “one of my biggest concerns is that there haven’t been any ‘gold standard’ studies proving the triggers he mentioned are the culprits.”
REFERENCES used here:
Thompson, T. (2012). Making Sense of Autism; Brookes Publishing; Baltimore, Maryland; Ch. 7.
Excerpts from the book – (4% indicates location in the Kindle version of the book, instead of page numbers).
4% Diagnosis without directions: this is what it is to be told your child has autism. It is my intention to help you understand why that is and then to change that reality by teaching you what to do to improve the prognosis. I will introduce you to the boy who introduced me to autism… it was attempting to understand Dar that taught me to understand autism.
5% You can make a curative difference and yes it’s hard but it’s also fun. It does however take loads of time and effort. And that’s why I’ve called this book ‘Miracles Are Made’ because in fact they are.
8% I did it myself, with the help of others who were willing to see me as the expert in my child’s development, and so can you.
9% Dar was labeled PDD (Pervasive Developmental Disorder).At four years of age, Dar’s IQ was placed a nine-month-old level leaving him in the extremely retarded range. I began to read about autism at the same time that I applied to adopt him.
12% I believed understanding Dar was the key to figuring out how to teach him. That’s when I decided to figure this disorder out, change the course of my own children’s lives, and share the magic with whoever else wished to know what I had learned.
14% Brain disorders always present as clusters of symptoms rather than just one singular problem. For example, a child with autism may have sleep issues, depression, or sensory-seeking behavior that is only satisfied by great big deep pressure hugs, and tics, while another with the same disorder may have outbursts, periods of despondency, contact avoidance, seizures, and self-abusive behavior.
Thus it is true to say that ‘autism’ is a group of symptoms rather than a particular thing. And that these symptoms, these clusters, are connected and reinforced by each other so as you heal one you affect the others: While you heal the autism you smooth out all the behaviors created by the sub-disorders contained within it.
< My Thoughts > “…connected and reinforced by each other so as you heal…”
“The goal of neurofeedback is for the patients to come to recognize the onset of electrical negativity and then to push in a positive direction. Attention Deficit Hyperactivity Disorder (ADHD) subjects train their brains to produce fewer theta waves and thereby more beta waves.” They also learn how to sustain pleasant feelings longer, Ulrich, K. (2006).
REFERENCES used here:
Ulrich, K. (2006). Train Your Brain; Scientific American, Feb/Mar 2006; Vol 17:1, p. 58-63.
Excerpts from the book – (4% indicates location in the Kindle version of the book, instead of page numbers).
4%/1,001 Do not allow yourself to journey down the road marked CURE. Instead, travel down the road toward RECOVERY.”
Parents of autistic children need to adopt the mentalities of both a researcher and a warrior. As both general and soldier in this fight, you must take ownership of all aspects of treatment, education, therapy, and organization as if preparing for battle.
As a warrior … you will experience the stress that accompanies battle. Battling autism can leave one feeling devastated and alone. You will need help and support along the way.
5%/1,001 Pay attention to any symptoms at any age. Any loss of any language or social skills at any age. If you have any inkling that your child’s development is off, it should be handled at the youngest possible age, as we now know that early intervention leads to better outcomes. Children who are at risk (particularly those children of parents with auto immune conditions or those with siblings on the autism spectrum) should be watched very closely for any of the known symptoms.
If your pediatrician isn’t seeing what you see, don’t wait for him/her to come around. If your child is under the age of three, contact your state’s early childhood intervention program and ask for an evaluation. You can also visit a developmental pediatrician or clinical psychologist trained in diagnosing ASD.
It’s not your fault your child has autism…it never was…and it never will be.
Don’t ignore your inner parent voice. If you think professionals are off-base, don’t dismiss your instinct because you’re “just” a parent, and he/she is a highly esteemed professional. Get another opinion.
< My Thoughts > “Don’t ignore your inner parent voice.”
Don’t ignore your inner parent voice… because you’re “just” a parent, and he/she is a highly esteemed professional.
I can’t stress this enough! If ‘they’ (the esteemed ‘they’…doctor, teacher, therapist, or other) are telling you everything is fine…hinting that the problem is with you…the overanxious parent…then head for the door.
Or, in another situation…if you’re not happy with what educators are presenting to you as their “must do” solutions, ask for additional verification. Everyone has their own idea of what comes first – the chicken or the egg. Yeah!
According to Murray, et al. (2007), “Parents’ viewpoints on what works and does not work when collaborating with professionals in terms of family choices, their suggestions for strategies are notably absent from the literature.” But families need to make choices over the lifespan of their child.
Family choice about the ‘pros and cons’ of interventions, service options, or what is really needed, should be shared with the professionals who can help to make any of those decisions. “Unfortunately, professionals are not often trained to defer their own personal values,” when assisting the family.
7%/1,001 Autism is a spectrum, and all the children with autism are different. What works for one child may not work for another. For this reason, some of these tips may appear to be contradictory.
19%/1,001 Also remember once your child has an official diagnosis they are entitled to Medicaid, which has some pros and cons and is covered throughout the book. Your child can qualify for Supplemental Security Income (SSI), but this and the Medicaid benefits will only go so far. If either parent is a veteran, there may be VA benefits or services available. Check online for biomedical treatment options covered by TRICARE (Military entity). Also check on Supplements, Respite Care and other programs like STOMP and Autism Salutes (also military).
< My Thoughts > Your pediatrician can recommend a specialist…
In the ‘know the protocol’ department…determine what your insurance company requires to change pediatricians, get referrals, and/or pay professionals on ‘their list’. We found out the hard way when we were told… "if you had been referred to someone on our ‘list’ we could have paid for it. Now, after-the-fact, you will have to pay that $1,000 plus out-of-pocket." Ugh! Even/especially Medicaid has a payment protocol. They may need several months notice about providing services or payments.
REFERENCES used here:
Murray, M., Christensen, K., Umbarger, G. et al. (2007). Supporting Family Choice; Early Education Journal; V35:2, p111-117.