*Especially for Severe Cases, Challenging Basic Survival:
Compiled and updated 2021 from my 2016-2017 blog;
Dedicated to the millions of special needs parents.
To you, who have lost former dreams
In exchange for new dreams;
More beautiful than you could have planned on your own.
For Friends and Family of Someone with Autism;
Thank you for caring and understanding. Sometimes that’s all we need; someone to check on us regularly so we know we are not alone. Isolation is the worst thing that can happen to a home with autism.
Inclusion is the best thing. Consider asking your family or friends caring for someone with special needs; What does inclusion mean to you? What is something I can do to show my support and love for you?
For Parents, Guardians, and/or Caregivers:
So Your Child Has Autism; What I wish I’d known when I first learned my son was on the spectrum.
What should you do now for your autistic child?
You don’t know if your child has ASD (“Autism Spectrum Disorder”)? *Personally I’d rather change the words “disorder” and “disability” to different ability. I think it’s more fitting, anyway. Check the following links for indicators:
http://www.cdc.gov/ncbddd/autism/signs.html
https://www.nichd.nih.gov/health/topics/autism/conditioninfo/Pages/symptoms.aspx
http://www.cdc.gov/ncbddd/actearly/milestones/index.html
This list may take months or years to accomplish. The faster and more help you can obtain for your child now, the better off they will be later on. According to our best knowledge so far; autism is most likely a genetic trait triggered by environmental factors. It seems to be linked with high intelligence.
That intelligence can get unlocked with the right support for your child starting at a young age. Autism is not a problem. Problems related to autism only come with a lack of support. Here’s how to get the support needed to help unlock your child’s great potential;
1. Get a diagnosis. Talk to your pediatrician to get started. He/she may refer you to someone else, such as a psychiatrist, neurologist, early intervention specialist, etc.
Your child may require various evaluations to obtain or explore a diagnosis. Whether your child’s doctor requires them or not, you may consider the following:
- Hearing test
- Sight exam
- MRI
- Blood allergy tests
2. Sign up for Early Intervention (If your child is 0 – 3 years old)
3. Contact your local school district and apply for diagnostic preschool or elementary programs (ages 3+). Public school programs are available until your child is 21 years old.
4. (For any age) Go through your insurance to obtain as much recommended therapy as possible. Use their website or call them directly to get a list of service providers they cover for the following therapies:
A. ABA (behavioral) therapy.
B. Speech therapy
C. OT (occupational therapy)
D. Food therapy (if needed)
E. Any other therapies your child may require
F. Respite Care; Search to find the name is for the state-run service in your area, and apply to get on the wait list. Call to confirm that you’ve successfully been added to the list after you’ve sent in the application.
**Whatever your insurance will not cover, pay in cash if possible. For the best outcome, if your child is on the severe end of the spectrum, he or she needs 25-40 hours of therapy weekly. If you are unable to obtain that amount of therapy for your child, get as close to that amount as you can.
5. Apply for other services through the state:
SSI – Disability Income (if needed–you must be earning below poverty level, and have below maximum savings allowed in order to qualify).
6. I have not yet reached parenting an adult with autism, but am mentally preparing for the range of possible outcomes. This article seems helpful for parents of adults with autism;
http://www.nbcnews.com/news/us-news/you-dont-outgrow-autism-what-happens-when-help-ends-21-n340066
No matter how long it takes to build your team—your very specialized “village”—you got this. You really do.
If you need help, apply for it! The more assistance your child gets starting from a younger age, the more independent they can become as they get older. It is worth the effort in the midst of daily survival. Life can become more than the struggle of surviving.
When I first realized my son had autism, I sadly believed I’d never have a conversation with him. But after years of working up to it and obtaining all the developmental support for him, I’ve been so blessed to have many conversations with him. He has taught me profound communication on an energetic level that I’d never have learned without him.
What helped us take some of the first steps in this direction is how Temple Grandin’s story inspired me. At age four she wasn’t speaking yet, and though her mother was advised to put her in an institution, her mother refused. She instead continued to guide her development with family, and school; and with the help of the community Temple Grandin has become an inventor, author and speaker, changing countless lives including my own. (Watch the HBO special, or search for her Ted Talk, books etc, and the story can be more impactful for you.)
Your child could change the world, and you can change their world. Whether they become an inventor or achieve partial independence it’s a win! The process is gradual. It doesn’t happen in a day or a decade. But in less than ten years my child on the spectrum has become my best teacher. He has taught me how to communicate in ways I didn’t know were possible. The patience, love and self-acceptance developed through the day-to-day efforts, not to mention perseverance, are only a few of the gifts we can gain as we work with special needs children.
In the beginning I didn’t think I could do it. I didn’t feel capable; and I wasn’t capable then. But I am qualified now, after many parent trainings, and thousands of days and tens of thousands of hours, to be the mother AND therapist, advocate, chauffeur, and friend that my child needs me to be. I have become someone I never thought I could be. I wish I could convey that to all the people who need to know about autism. It is both an immense challenge and an incredible privilege.
I believe if more people knew the gifts you can gain from spending time with children like ours, then there would be no waitlist for respite care. Instead there would be a surplus of people trained and excited to join the autism team, along with the many already passionate individuals training as teachers, therapists, classroom aides, behavior specialists such as RBTs (Registered Behavior Technicians), BCBAs (Board Certified Behavior Analysts) and more.
It’s worth learning about. It’s worth getting through the tough days. Celebrate the moments of joy with your child, and find out what is their gift for the world, and what is yours. I feel like my son’s gift is genuine joy.
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Universe Rules 