101 Tips for the Parents of Boys with Autism & 1,001 Tips for the Parents of Autistic Boys
by Ken Siri; an Extended Review with < My Thoughts > by Sara Luker
Excerpts from both books – (5%/1,001 or /101 indicates location in the Kindle version of the book, instead of page numbers).
5%/1,001 It’s not your fault your child has autism…it never was…and it never will be.
4%/1,001 Do not allow yourself to journey down the road marked CURE. Instead, travel down the road toward RECOVERY.”
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.
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.
5%/1,001 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.
5%/1,001 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.
4%/1,001 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.
4%/1,001 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.
< 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.
23%/100 Get your non-verbal kids an iPad. This can be a game changer. There are several great communication apps now available, including Proloquo2go, AutisMate, and Avatalker (www.avatalkeraac.com). You can even get your local Board of Education to cover the cost of the device, including any future damage, protective covers like OtterBox.
Before the iPad came along, Alex had to rely on gestures, approximations, and PECS images to communicate his needs and wants. Alex would frequently melt down and even turn aggressive towards himself as he became exasperated with his inability to convey his requirements.
24%/100 Once your child is confirmed non-verbal or would benefit from a device, as stated in his IEP, then the BOE or Medicaid is required to cover the cost. The IEP can state that he requires a “Dynamic Display Speech Generating Device”, which an iPad with apps can function as.
25%/100 The IEP meeting includes yourself, your son’s teachers, various school representatives, and a parent representative. You can bring your own specialists and support folks to help you in any way (moral support, reminders, etc.)
92%/1,001 Don’t wait until the legal age of the school’s transition plan to start transitioning you child into increasing responsibility and independence. The kids will not willingly go along with this plan to do more, but set an expectation and reward small (very small) steps toward the accomplishment.
The adult world is unaccommodating – a fact that is hard to face for everyone, but is particularly so when our special education teams have tried to serve our kids by accommodating to their disability.
Prevent the IEP team and yourself from making decisions that always keep your child comfortable and in control of what he wants to do. …the world frequently does not offer “comfortable” options.
< My Thoughts > Individual Education Plan (IEP) thoughts…
Absolutely, the parents, guardians, and other caregivers should bring their team to the table. As a parent myself, attending my first IEP for Sonny, sitting at a huge table with strangers was intimidating, even frightening. All of these ‘professionals’ sat there like crows lined up on a fence, while I was made to feel that any minute I would be under attack. I’m exaggerating… but for first-timers… even for me as an educator… it’s pretty intense.
Because parents have an intuitive sense of what will work for their child, they should be prepared to bring support in those areas which are already working for them. If your child is doing well with certain programs carried out at home, then that provider should attend the IEP meeting. Especially if you want to have any current intervention made part of the child’s school program.
Now from a ‘teacher’s’ point of view. As one of the child’s teachers, I created the first part of the IEP to ‘paint a picture’, describing how we as a team see the child. If you as the parent disagree or don’t understand the jargon on any part of that assessment, speak up! I create the IEP document at the computer so I could be ‘friendly’ about making any changes.
When it comes to the child’s education, parents and professionals can take more of a team approach. Speaking as a special education teacher, I bring a team to the table. This team consists of the principal or surrogate, school psychologist, school nurse, various school therapists (Physical, Occupational, Speech/Language, Adaptive Physical Education teacher, and if needed… Vision specialist, social worker, and mental health personnel; vocational specialists for the older child.). Also, the school Special Education personnel, teacher, aides, facilitators; plus a general education teacher who can speak to the class requirements, accommodations, etc.
Everyone at the meeting should have a ‘draft’ of the proposed document. Back to the parent team… you can bring basically anyone you feel knows your child and will help you process what is ‘really’ happening and being said. Ask for a break; say you need more time (within reason… sleep on it…) before you sign this legal document. Ask for another meeting in 3 – 6 months, if you feel pressured into agreeing with things you’re not sure of. Keep in mind that the severity of the autism may limit what the school is willing to agree to. Ken has addressed the IEP process in both of his book… check further. Smiles.
7%/101 Run! No, not away from your concerns, but as a way to deal with them. You need exercise to keep fit for parenting, and nothing is easier, cheaper, or more fun than running. Running is also a bona fide stress reliever and provides an opportunity for your mind to organize its thoughts.
< My Thoughts > “…keep fit for parenting…” While taking care of your child, take care of yourself too. Right from the beginning. RUN! …go alone, or join a club, or run with a group…wear gadgets… whatever it takes…RUN! Or in my case… walk as fast as you can… with tunes in your ears. Smiles.
7%/101 Run with your son. What could be better? Get him involved, it can provide the same exercise, stress relief, and mental calming for him.
< My Thoughts > “…stress relief, and mental calming for him.”
Many persons with autism avoid anything associated with exercise, gym, music, or dance. Menear, et al. (2006) tell us that their “informal observations have shown that many students with autism who have low motor skills and fitness abilities have initial difficulty traversing typical school or park playground equipment without assistance. Poor eye-hand coordination, trouble combining multiple motor skills into one task, any structured balance related physical activities or group activities can be difficult.”
6%/1,001 …You will never forget where you were when certain National and World events took place. The day you receive the news of your child’s ‘Autism’ diagnosis is just as traumatic; the only difference is, no one else is sharing your pain… your life is changed forever. What to do first?
< My Thoughts > “…your life is changed forever.”
As a teacher, I tried to stay in the here and the now. What would help the child and the family the most? For the child to be able to communicate? For the child to stop having hella-tantrums? For the child to listen to and obey safety commands? For the child to be toilet trained…feed himself…be engaged quietly for a short time? What we most often hear is – “I could deal with all the behaviors if I could just hear him say “Mama.” If he would just acknowledge me by looking me in the eye…If he would just hold my hand and walk with me. Sorry to say that these goals are way, way off in the distance (if they ever happen)…but we as parents want this too, so I always tell mom that we will try.
At the time of diagnosis, I don’t believe the educator or the parent truly knows what the eventual outcome or level of care necessary will be. The other reality is that new interventions are being embraced as we speak, such as assistive technology and augmentative communication, which may provide the missing link for your child to find a more productive life.
As an educator, I also know that many of my colleagues are continually attending workshops, interactive seminars, college classes, and meeting yearly professional development requirements. But, then there are those others who stand by their original understanding of what it takes to educate and support a child on the spectrum. In fact, the idea of a ‘spectrum’ may not have existed when they formed their steadfast opinions about autism. I went back to get a Master’s in Special Education for that reason.
This is where you become both researcher and warrior. Find out about those people who are inserting themselves into your child’s life. It is costly to change programs, change schools, or even move to another state.
14%/1,001 Consider your options. Do your research. Consider moving to another state. Some states spend a greater percentage of their budgets on social services and thus have more services available. You need all the help you can get; seek out states considered to be “autism friendly.” Easter Seals has compiled a list of state profiles. Look for states with bigger budgets for social services, and for a higher percentage of autism programs.
8%/100 In some cases, one or both parents may need to change or adjust their career plans to accommodate the care of a special needs child. As a single parent, the challenge can be daunting. Many parents have remade themselves successfully and found a greater satisfaction in building their own business. These are not really tips, but have benefits as well.
- You can control your own time
- You do lose ‘security’ in the traditional sense. But let’s face it: a traditional job (in today’s world) only gives the illusion of security.
- Being your own boss means not having to deal with unsavory things or people.
- Socially, you are free. (You don’t have to get along with people you don’t really like.)
- You can use your time wisely and efficiently.
9%/1,001 (Ken recommends trying meditation) …just three months of meditation can create more gray matter in areas of the brain, impacting self-awareness and compassion.
Meditation can quiet your overactive thinking, which can fill your mind with worries and distractions. Meditation helps prevent your mind from wandering so you can stay focused on the task at hand. Meditation also blocks stress and protects your brain from stress-related damage to attention and memory.
< My Thoughts > “You can try meditation.”
According to this article, meditation and mindfulness can have a great influence on wellbeing of all people. Adolescents with high-function autism or Asperger’s syndrome have even more promising results. When taught to “shift their attention from anger and frustration to focus on the soles of their feet,” they showed a decrease in negative emotions. Acquiring and using self-help techniques can help those on the autism spectrum to “be in the moment” and to “not worry about things they cannot change.” Retrieved from – http://autismandmindfulness.org (I think that I would need sit in front of a mirror… somehow… to see the bottom of my feet. Or, sit cross-legged? Just saying… Smiles).
Yet another article, explains TM (Transcendental Meditation) as “sitting in a comfortable position with your eyes closes and repeating a mantra.” The mantra can be a resonating sound (“Ohmmm”), or a saying which brings you to a peaceful place. This article cautions that “TM is not a replacement for medical treatment”, but it can, after 6 months of practicing, in fact result in a reduction in daily medication. “Just 10 minutes in the morning and 10 minutes after school and before dinner should result in the child being less likely to act out, seem happier and more focused.” Retrieved from http://www.everydayhealth.com/news/this-no-cost-drug-free-therapy-helps-children-with-autism/
Sequeira & Ahmed (2012), in their section about ‘Meditation’, say that along with meditation to treat some symptoms of autism, “Several approaches have been suggested such as acupuncture, message, auditory integration training, detoxification, and neurofeedback.” They caution, “however the studies available so far are insufficient to support or oppose their validity.”
9%/1,001 … just three months of meditation can create more gray matter in areas of the brain impacting self-awareness and compassion. Meditation can quiet your overactive thinking, which can fill your mind with worries and distractions. Meditation helps prevent your mind from wandering so you can stay focused on the task at hand. Meditation also blocks stress and protects your brain from stress-related damage to attention and memory.
< My Thoughts > Transitioning from ‘Meditation’ to ‘Medication’… Smiles.
13%/1,001 The process of determining the appropriate medication and the appropriate dosage cannot be completed overnight. The process will, at first, require weekly office visits with the prescribing physician.
12%/100 Parents, physicians, and therapists must realize that difficult-to-treat ASD behaviors or behaviors that have not been responsive to standard behavioral interventions might be the sole manifestation of a GI diagnosis.
12%/1,001 In most cases, it took your child years to develop the GI condition; you need to get him regular for months to shrink the colon back to size.
If your child has frequent nighttime awakenings and/or other wetting, they should have a full GI workup; nighttime awakenings can mean reflux, and wettings can mean allergies. The presence of chronic (long-standing) GI symptoms demands medical evaluation. The symptoms typically consist of any (or all) of the following:
- Abdominal pain
- Diarrhea… stool has no shape
- Constipation… infrequent passage of stool or overly hard stools
- Painful passage of stools
- Rectal prolapsed (Difficulty controlling bowel movements, or lose the urge to defecate.)
- Failure to maintain normal growth (Height & weight)
- Regurgitation and/or Rumination (regurgitating and chewing again, previously swallowed food)
- Abdominal distention
- Food avoidance
41%/1,001 Children with autism frequently have gastrointestinal problems, particularly constipation and diarrhea. When a child has GI symptoms, we generally find inflammation somewhere along the GI tract, but particularly in the terminal ileum, on endoscopy as well as biopsy.
Many autistic children have evidence of abnormal intestinal permeability, or what we call “leaky gut.” We continually find inflammatory bowel disease that is different from Crohn’s disease and ulcerative colitis. …Undiagnosed abdominal issues are the cause of many of the behavior symptoms of autism. If you imagine yourself as a nonverbal or poorly communicative individual who has chronic or intermittent abdominal pain, a lot of your behaviors are going to look pretty autistic.
40%/1,001 There’s a great body of evidence in the literature documenting immune dysregulation in autistic children leaving them prone to infection, chronic inflammation, and autoimmune reactions; it can affect any organ system, but the brain and the GI tract seem to be the worst hit.
The pattern of the inflammation is not consistent with the brain as the primary source. This is critical, because it suggests that the inflammation is starting somewhere else and the brain is a secondary target organ, not the primary source.
We think that the inflammatory process in the bowel may result in secondary inflammation in the brain.
< My Thoughts > “inflammatory process in the bowel may result in secondary inflammation in the brain.”
Pennesi, et al. (20102) have found that parents of children with autism often “report improvements in speech and communication skills, decreases in hyperactive behavior, improvements in their child’s ability to focus, and decreases in sleep problems following implementation of a gluten-free, casein-free diet.”
Those physical symptoms said to have been alleviated include – diarrhea & constipation, food allergy symptoms including skin problems, red cheeks, red ears, rash and/or red ring around mouth and/anus, hives, dark circles under eyes, sneezing, stuffed nose, itchy, watery & red eyes.
This study cautions that while ‘some children may positively respond to the dietary intervention, other research may not. Success seems to depend upon the type or severity of GI abnormalities and immune function. Researchers also reveal that “parents who implemented the diet for 6 months or less reported fewer improvements that those who stayed on the diet for more that 6 months.
3%/100 Treatments for GI issues have significantly benefited Alex and though still non-verbal, his behaviors, control and vocalizations have improved over the last two years of treatment for those GI issues.
31%/1,001 Children with autism as a group have notoriously poor nutrition coupled with vitamin and mineral deficiencies. This may be due, in part; to extreme eating habits (they are notoriously picky). Deficiencies are also likely due to the above mentioned tendency toward malabsorption.
42% Enzymes might be helpful in other ways for those with autism. Keeping the gut free of undigested material prevents putrefaction that might lead to pathogenic bacterial blooms and yeast problems. Give probiotics and prebiotics after a meal to maximize absorption, as stomach acid is then otherwise engaged.
< My Thoughts > “Give probiotics and prebiotics…”
Patel & DuPont (2015), add synbiotics to that group. In their article they define ‘bacteriotherapy’ as to include all three because they each have ‘slightly different agents’. They describe ‘probiotics as ‘living bacteria or fungi that benefit the host; ‘prebiotics’ as nondigestible compounds that favorably change intestinal microbiota; and ‘synbiotics’ are defined as products that contain/combine both. All three are used to treat and prevent an array of diseases. The human gut microbiota plays an important role in human health.”
40%/1001 “Neuroglial Activation and Neuroinflammation in the Brain of Patients with Autism.” Dianna Vargas documented that autistic individuals have inflammation in the brain. This was one of the first studies to show this, because the inflammation doesn’t show up in MRIs or CAT scans, but it does show up on biopsies of the brain. Much information can be gathered on the PubMed website. Also, it should be understood that this Vargas study was performed on the brains of individuals with autism who had passed on (ie. brain biopsies of deceased individuals with autism).
< My Thoughts > Neuroglial activation and neuroinflammation in the brain of patients with autism. On 9/30/15; retrieved from: http://www.ncbi.nlm.nih.gov/pubmed/15546155
In searching out this article, the Abstract tells us –Autism is a neurodevelopmental disorder characterized by impaired communication and social interaction and may be accompanied by mental retardation and epilepsy. Its cause remains unknown, despite evidence that genetic, environmental, and immunological factors may play a role in its pathogenesis. To investigate possible causes, we studied brain tissue, using that brain tissue from the cerebellum, midfrontal, and cingulate gyrus obtained at autopsy from 11 patients with autism. The article goes on to say what author Ken Siri reports, including data from Vargas.
< My Thoughts > In another interesting article regarding ‘brain tissues’ and autism, I found this…
According to Sequeira & Ahmed (2012),the brain is composed of three distinct tissue types: gray matter, white matter, and cerebrospinal fluid. Being highly plastic, brain tissues undergo short and long term changes in structure when cognitive tasks are performed and repeated. Also, it is hypothesized that neuronal activity causes network ‘pruning’ or the formation of new synapses and concurrent elimination of old synapses, resulting in synaptic efficiency, tissue thickness, and enhanced cognitive ability. In autism, these functions are interrupted, or do not occur the way they do in a neuro-typical brain.
In an article by de Theije, et al. (2011), the authors “review focuses on the importance of allergic gastrointestinal problems in ASD. Alo provide an overview of the possible gut-to-brain pathways and discuss opportunities for pharmaceutical and/or nutritional approaches to therapy.”
Jones, et al. (2006) in an article, almost too technical for me to decipher, seems to say that when scientists know more about the disorder they will better be able to target treatment. They do say in plain language however, that the “…functional gastrointestinal disorder (FGID) has a “psychosocial disturbance” connection. “The Central Nervous System (CNS - fight or flight response) are present in many patients with FGID and are increasingly prevalent in referral populations.” This condition “can influence digestive function, symptom perception, illness behavior and outcome. Conversely, visceral pain can affect central pain perception, mood and behavior.”
32%/100 Experience has shown that most people on the autism spectrum will benefit from a diet that is strictly free of gluten and dairy; therefore, the removal of these should be considered the foundation for dietary interventions. Additional changes are almost always needed for optimum improvement, but one size does not fit all. Every parent’s goal is to find the ideal foods that will provide maximum benefit without being unnecessarily restrictive.
The most commonly restricted foods include gluten (a kind of protein), dairy, corn, soy, yeast, oxalates (a kind of salt), sugars, and starches. Other principles might apply, such as the use of probiotic (beneficial organisms) foods, healthy fats, organic (naturally developing) foods, and the restriction of food additives and artificial colors.
38%/100 Become an educated consumer; familiarize yourself with PubMed (http://www.ncbi.nlm.nih.gov/pubmed), the government’s database of published research. When considering a possible treatment, search PubMed first and weigh the evidence. When beginning biomedical therapies it’s best not to begin everything at once. Try to phase things in over the course of weeks and months so that you can determine what might and might not be working.
5%/100 Put your son on an organic diet, and remove additives, preservatives, colorings, processed carbs, and sugars (and don’t forget juice, which is usually mostly water and high fructose corn syrup). Instead, utilize complex carbs (slower absorption) and healthful proteins, then observe. This will provide clues on which diet to follow, and how strict implementation will need to be. Share these clues with your nutritionist…
4%/100 Keep in mind that ‘nondairy’ does not mean milk-free. It is a term the dairy industry invented to indicate less than 0.5 percent milk by weight, which could mean fully as much casein as in whole milk.
< My Thoughts > “…juice, which is usually mostly water and high fructose corn syrup.” Make your own juice in a juicer or a blender. Good for the whole family. Smiles. More on food & diet… from Siri –
5%/100 One child only ate Chiquita bananas because he fixated on the label. Other fruit such as apples and oranges were readily accepted when Chiquita labels were put on them. Try putting different but similar foods in the cereal box or another package of a favorite food. Put a homemade hamburger (turkey burger on a gluten-free bun) in a McDonald’s package.
5%/100 Use only Himalayan salt or sea salt, Himalayan in particular is the most clean, as the oceans contain chemicals including lead and mercury. Common refined table salt contains aluminum. Yes, aluminum. It is used to cut the salt and keep it from sticking. Needless to say, this is quite unhealthy, and it’s important to know that aluminum enhances the toxicity of other toxins.
6%/100 Remember the prime source of vitamin D (which stimulates the production and use of calcium in the body) is the sun. Get enough sunlight on your child each day, about fifteen minutes will do, and skip the sun block during this time. Worried about the rays? Take your fifteen minutes in the early morning or late day when the sun is ‘weaker’.
7%/100 Finally, while it might be challenging to have your entire family follow this dietary path, the benefits of introducing everyone to more pure, whole foods should be obvious. Just try and make changes in small batches, as too many adjustments at once are difficult to process, track and keep. Slow and steady wins this race.
15%/100 I have heard many stories of people with autism at all ages showing significant improvement with various therapies. Most of Alex’s progress to date has come after the age of fourteen.
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).
Keep track of medical expenses for tax season and know the name of the “Commissioner of Insurance” for your state, should you get the runaround from your insurance plan. You are most likely entitled to Medicaid and a Handicapped Parking sticker for easier access to buildings providing services for your child. The DMV has paperwork to be filled out by your physician.
Check all insurance policies of both parents. Which one will provide your child with more coverage? This may also help you decide which parent may have to reduce or rearrange their work schedule to meet the needs of your child’s many appointments and therapies.
5% < 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. Even/especially Medicaid has a payment protocol. They may need several months notice about providing services or payments.
Look for the deep pockets before you overextend yourself on your credit card. I raised my credit limit while I still had a job and decent credit. It’s a bit of a stress reliever to know I can use the card to take advantage of opportunities which may arise and that might speed up the process or put my child at the head of the line. Of course, I only use it when time is of the essence…I use caution…and exhaust all ‘free’ sources first.
15%/100 While there is some help from the government (for medical bills), most notably Medicaid, there is not nearly enough. Your child may qualify for Supplemental Security Income (SSI), but this and Medicaid benefits will only go so far. You will likely dip, if not drain, savings… especially if you pursue alternative therapies.
18% Remember that insurance is a business – your provider wants to take in more money than it pays out. This is definitely an area in which the squeaky wheel gets the grease.
< My Thoughts > … continued about medical costs and insurance coverage.
Added to medical problems…our children tend to have huge dental problems. You may want to find out if your health insurance has an eye and dental plan that you can add for the family. Our son has had to have glasses and several dental implants which don’t come cheap. The alternative is to extract the decayed teeth and watch his gums shrink…or to get a partial plate. He won’t even wear his glasses or a hat…let alone dentures. Please!!!
It is not unusual for children with ASD to have eye problems. Our son’s eyes don’t focus together. One eye is looking ahead appropriately while the other one is wandering off in another direction. (P.S. This doesn’t really have anything to do with him not achieving the coveted ‘making eye contact’ that everyone gets so excited about.) Eye exams often require a pediatric ophthalmologist who can examine the child’s eyes while he/she watches an engaging video.
And, all dental procedures and creation of a treatment plan needs to happen in a special clinic where an anesthesiologist can put him under so they can examine him, clean his teeth and take x-rays. Then under again for necessary procedures…and one more time after healing has taken place after extractions and to place implants. Each time, the anesthesiologist fee is in the thousand dollar neighborhood. Because the insurance only pays for the anesthesiologist once per year, I barely get the fee paid off before it’s time for his 6 month check-up. Hmmm…
96%/1,001 A special-need trust serves two primary functions: First, it provides management of funds for your child should he/she not be able to do so. Second, it preserves his/her eligibility for public benefits, including Medicaid, SSI, or any other program.
< My Thoughts > A special-needs trust…
A special-need trust protects your estate, your child’s rights, and prevents other children of current or former marriages from disrupting your son’s flow of funds and services. Also good to know is that in many states, in order to continue state benefits parents must become legal guardians of their disabled adult children. Sounds crazy but those are the rules. Set this up before your child becomes eighteen. Know what your legal rights are; with insurance companies, with school districts, with state and county services. Get in the know… you’ll be glad you did.
8%/1,001 If you have Medicaid you get free evaluations. Check with your state websites to see if your family is eligible for Medicaid and CHIP which provide health coverage to nearly 60 million Americans, including children, pregnant women, parents, seniors and individuals with disabilities. There is also the Affordable Care Act of 2010, which expanded Medicaid eligibility in 2014.
7%/1,001 < My Thoughts > “Don’t be afraid of the autism label, because it will help you get the services you need for your child.”
Don’t be afraid of the autism label. To get services you must have a diagnostic label and the autism (label) diagnosis gets you more of everything.
As a special education teacher, and before becoming a parent of a child with autism, I felt sorry for those parents who were in denial and could not see the ‘big’ picture. I wanted to take the parent aside and say, “Your child is so far away from hitting any developmental milestones, now or ever. Please…stop being in denial… accept that Autism label! Get started helping him!” But of course that would be quite unprofessional of me.
Now on the other side of the table …how dare I take that attitude! Now I know that the term ‘Developmental Delay’ or PDD-NOS, ‘Pervasive Developmental Delay, Not Otherwise Specified’ sounds better than Autism. ‘Delay’ and ‘NOS’ implies that better days are right around the corner. In the classroom, it just gives teachers a perimeter around which to confidently plan lessons and create goals for the child. But those labels throw fear into the hearts of parents. In many cases the child’s growth and progress is just delayed, but in other cases, important milestones may never be met, because someone refused the ‘autism’ label.
54% Having autism does not mean your son cannot have a fulfilling life; do not allow the language of victimhood into your vocabulary. Use empowering words that teach him that he is without limits.
88% Finally, remember you will need patience and optimism in this journey. Nobody can foretell the path your child will take and the spectrum of outcomes is broad. Take things step-by-step, stay present, and relish each day.
< My Thoughts > These are such comprehensive books. I have devoted only a few pages to them and only touched the surface of both books. Hope you will read them both… cover to cover. Smiles.
References used in < My Thoughts > are:
De Theije, C., Wu, J. da Silva, S., Kamphuis, P., Garssen, J, Korte, S., Kraneveid A. (2011). Pathways Underlying the Gut-to-Brain Connection in Autism Spectrum Disorders as Future Targets for Disease Management; European Journal of Pharmacology; Vol668, pS70-S80.
Jones, M. & Dilley, J. (2006). Brain-Gut Connections in Functional GI Disorders: Anatomic & Physiologic Relationships; Division of Psychology, Feinberg School of Medicine; 18, p91-101.
Menear, K., Smith, S., Lanier, S. (2006). A Multipurpose Fitness Playground for Individuals with Autism; Journal of Physical Education, Recreation & Dance.
Murray, M., Christensen, K., Umbarger, G., Rade, K. Aldridge, K., Niemeyer, J. (2007). Supporting Family Choice; Early Education Journal; Vol 35:2, p111-117.
Patel, R. & DuPont, H. (2015). New Approaches for Bacteriotherapy; Prebiotics, New-Generation Probiotics, and Synbiotics. Clinical Infectious Diseases; Supplement 2, Vol.60, p108-121.
Pennesi, C., Klein, L. (2012). Effectiveness of the Gluten-free, Casein-free Diet for Children Diagnosed with ASD: Based on Parental Report; Nutritional Neuroscience; Vol 15:2; p85-91,
Sequeira, S., Ahmed, M. (2012). Meditation as a Potential Therapy for Autism; Autism Research & Treatment; 2012, p1-11.