The Guide to Getting Help for Your Autistic Child
Episode 45
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Disclaimer: The materials and content within this podcast are intended as general information only and are not to be considered a substitute for professional legal advice or a consultation with a lawyer.
1. Family Law Tip of the Week
When you need help, ask for it–not just from professionals, but from the people in your life who love you and want to help you.
2. The Guide to Getting Help for Your Autistic Child
Inspired by her autistic daughters, Tallulah and Myffanwy, Jennifer Turrell co-founded ABLE Intervention (Analysis of Behavior, Learning, and Education), together with Dr. Kristen Byra. They provide families with autism data solutions and support. With her first-hand experience in dealing with the difficulties rural families face in funding and accessing gold-standard level autism services, Jen authored
“Help! My Child Has Autism!: A Parent’s Guide to Start, Fund, and Maintain an Evidence-Based Intervention.”
In this episode of the Family Law Insider podcast, Jen talks about how to get help for your autistic child.
“We wanted to believe that everything was going to be fine.”
“Have we known what to look for, we might have recognized it earlier.” Jen went through tough pregnancies with both of her daughters. With Tallulah on the way, people told her, “As soon as the baby’s here, things will get better.” She held on to that. So even when Jen started noticing things about her daughter, despite talking to people about it, Jen went along with the pediatrician’s assurance that they all were going to be okay. It was only after about 2 years when Jen saw dramatic changes in Tallulah.
Looking back at videos of her baby, Jen realized that there were always a few things that were out of the ordinary. Even in her crib, Tallulah had some interesting behaviors that she and her husband thought were cute, but eventually realized were signs of autism.
Everything just got blamed on autism, but I felt there was something more.
Jen discovered at some point that a lot of the extreme behaviors that Tallulah started having were reactions to pain. Tallulah was diagnosed with Eosinophilic Esophagitis, from a second diagnosis, a year after her autism diagnosis. It is an important lesson for parents with autistic child(ren) that a lot of times, there are underlying medical conditions that could be hidden because of autism.
Starting yourself early.
“It’s so hard to judge kids in their skills.”
When Jen’s second child (Myffanwy) started showing symptoms similar to Tallulah’s, they watched her very closely. They started working with her early.
“With Myffy, starting her so much younger, there was less regression that happened.”
Catching up early with Jen’s second child, she saw incredible progress with Myffanwy. Myffanwy goes to a public pre-school and a private pre-school in a special needs program. With the parents of the other kids, if they haven’t seen Myffanwy have a big meltdown, most of them wouldn’t realize that she has autism… The point is not to hide it, though. It is to make your autistic child(ren) independent, as much as possible.
They call it the Autism Spectrum Disorder
The recent version of the DSM 5 (Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition) is used to separate out Asperger Syndrome, PDD (Pervasive Developmental Disorders), and such. But they’ve made all of these into one-spectrum disorder now with the collection of symptoms. The Autism Spectrum Disorder is so wide in range that you can meet 2 people on the same autism spectrum and you can see that they have few things in common. It can be confusing for people.
Start with a pediatrician
Oftentimes, specialists require a reference from the pediatrician. The pediatrician should send you to the early intervention program and possibly a developmental pediatrician. Jen was a little frustrated because their pediatrician really didn’t recognize the autism (although the pediatrician really did try to reassure them). After seeing the pediatrician, Jen and her Husband ended up getting their first audiologist to test Tallulah. The audiologist was the first person who suspected autism.
It’s good to explore other possibilities
“We ended up going to a lot of specialists before we ended up with a full diagnosis.”
Kids who have seizures could have symptoms that could look like autism. But when you treat the seizures, those symptoms lessen or go away.
Autism is a life-long disability
“If families feel like they can’t afford it, they aren’t going to explore all the options.”
Jen had to spend money on private-paying ABA Therapy, out of desperation, to get Tallulah started. Jen started researching resources that could help her with Myffanwy and other families having similar situations.
Half of Jen’s book is a resource section, with state-by-state resources, lists for all the insurance mandates, all of the links for the different state-by-state Early Intervention Programs, the Medicaid-funded resources, and all of the agencies. If through medical exams and interviews a patient’s level of need is high enough to qualify, there are a lot of services that could be paid through agencies like Arizona Long Term Care Services (ALTCS).
The goal is always independence
“We wanted wrap-around services.”
Hab-M (Habilitation Behavioral – Masters) helps families have a doctor oversee their program, training people to do the one-on-one help work at home. With such programs, a family with autistic child(ren) would be able to private-pay minimally. School programs (especially pre-school programs) in the school districts, help do a PO (Purchase Order) with their BCBA (Board Certified Behavior Analyst). Working around with all programs, everyone would be intensely working on specific goals for the child. And, there is continuity across different environments.
The goal is to get your autistic child to where s/he can hang-out with a group of kids, interact, and have it go well without adult help or supervision. In Jen’s situation, they began to go so far as to have a little play group, where a couple of typical peers had fun playing little games with her girls. It’s great both for the peers, who are learning more about kids with differences, and for children like Jen’s daughters to start having friendships. As a parent, one of Jen’s wishes is for her children to be able to make friends and have other kids who are understanding or who won’t mind that her daughters talk a little different and do things a little differently.
Start as early as possible
Jen recommends to start Early Intensive Programs as early as possible. These programs usually go until school starts, then there’s often a year or two of transition. As time goes on, the school district takes over more and more of it. The children have to go through learning outside of academics: independence, self-help, and other things. As the kids get into full days of school, it lessens the home-programs and the outside therapies. Outside of school, Jen’s children goes through speech therapy through their DDD (Department of Developmental Disability) program.
Funding and working through programs can be confusing. That’s why Jen made a flow chart in her book. The more continuity you have between a home-program, the school-program, and community-program, the better. It takes a lot of coordinating, but is possible.
Special Needs Trusts and protecting your family for the future
Set up a will and a trust once you know that your child has a disability. There is a $2,000 asset cap for Medicaid recipients. If your child inherits directly into their name, if it’s over $2,000, they could lose their Medicaid eligibility. It could take years to get it back, even if you spend down the inheritance. And sometimes if there’s enough inheritance, you have to pay Medicaid back for past services. So, it’s important to put-together a Special Needs Trust.
“If something happens to me right now, how much money would need to be in this trust for my children?”
It’s hard to judge what a child would need for the rest of their lives. The main thing is to accept contributions from the family. If a grandparent would like to give something nice for your child, it could put your child over the limit. Set up a special needs trust.
People like Dr. Byra and attorneys who focus in estate planning (like Hernandez Family Law) know how to set things up, so the beneficiary could receive things into this trust and they don’t lose (something like their social security and special needs) Medicaid eligibility.
It’s good to figure it out before it’s needed
You need to have a long list of guardians because you’re looking at your child’s whole lifetime. Autism could bring the rest of your family together. When all is done well, it gives a sense of relief and assurance to the parents.
Jennifer Turrell’s book is now available on Amazon and in Kindle. Her website, ABLE Intervention is focused on ability, not disability. As for music, Jen and her husband have a website called jenandstew.com which also includes their family blog.
3. Thoughts From the Life Coach
In today’s thoughts, James shares a poem about being sad.
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