When my child was diagnosed with autism I thought the help would start rolling in. I firmly believed that getting the diagnosis would be the hard part. Once we had that we would start helping him.
Maybe you will be one of the lucky ones where everything falls into place. In most cases that’s simply not true. Helping your child will feel more like an exhausting game of trial and error.
You’ll spend time googling and wondering what your next steps should be. You’ll hear about other families that have help. Terms like Consumer Support Grant and CDCS Waiver will be thrown around but for some reason you can’t find any information about them.
You’ll hear about Medicaid and Social Security.
You’ll hear about your neighbors grandma’s mailman’s kid that receives full-time ABA but you can’t seem to figure out how they got it. If you are anything like me it all gets to be very confusing.
You just want to help your kid. It shouldn’t be so hard.
At the time I logically turned to the professionals which in our case was the county and the state. I assumed they’d tell me about every service available to me.
I was wrong. They didn’t know all of the resources available. But you know who does? The parents that have done this before you. The ones that are living it.
Veteran parents are your best resources. Find them. Every benefit and service my son has came from another parent giving me advice.
Here are the 9 services that I didn’t know about when my son was diagnosed. And as a result we missed years of help. Note that much of this is specific to the state of Minnesota so I tried to offer links to learn more about other states. Some states are better than others. Some states are downright bad. I encourage you to to a google search. Educate yourself. Know what’s available.
Get a medical diagnosis
Before Cooper was diagnosed I was so confused between the medical diagnosis and educational diagnosis. I was new to the game. I could tell right away that the doctors didn’t communicate with the school district.
In a weird way it’s like they were at odds with each other. Which didn’t make any sense to me because I thought helping Cooper was the focus.
An educational diagnosis of autism will only get you so far. Pursue a medical diagnosis if you want any sort of financial help.
Waiting lists for appointments can be upwards of nine months long. Make the appointment now. You need that diagnosis to get any sort of financial help.
Also, you will learn somewhere along the way, that doctors don’t always know best about your child. Trust me on that. Try other tactics.
For example, we are trying medical cannabis and are seeing AMAZING things.
Call your County
The county is the gatekeeper for all local and sometimes state services. Call them. When they answer the phone say that your child has autism and you need help. They will transfer you. And transfer you again.
You will leave messages. You will follow up. And eventually a person will come to your house to evaluate your child.
You will feel worried, guarded, sad and confused. This person is there to help you. Tell them about your child. Describe your worst day.
If you were like me you will feel compelled to sugar coat your life. You will feel guilty if you say autism is hard. Don’t.
Be honest. This is the beginning of the journey my friend.
Get a Social Worker
I was adamant that I didn’t want a social worker. I didn’t need help. I didn’t want someone in my home or making decisions for Cooper. That was until I found you that a Social Worker is required to receive any sort of help.
I’m going to say it one more time.
In the state of Minnesota, you can’t get any service or help until you have a social worker in place. Our experience has been wonderful. We see our worker once a year unless something goes wrong or I have questions or need help.
Don’t be afraid. Call. They are there to help you.
Apply for Medicaid (Medical Assistance)
Every state is different. Let me repeat that. Every state is different.
Some are awful. Some don’t value people with disabilities.
Some are good. Minnesota does. If you live here consider yourself lucky. And if you see Governor Dayton or Commissioner Piper give them a huge high five because they value families that have disabled children.
The qualifying factor for a child to receive Medicaid in the state of Minnesota is the child’s disability…not the parent’s income.
Let that sink in. This means the Jamie and I both work, made a decent living, have private health insurance, and our son receives secondary Medicaid. WE PAY FOR IT through a program called TEFRA or the Katie Beckett Waiver.
The monthly fee is not small. Please know that.
We pay for it because Medicaid pays for ALL THE SERVICES that our private health insurance will not. ABA, transportation, waivers, diapers, PCA, etc. What Medicaid pays for is by far larger than our fee.
Ask your social worker about MA. The process to get approved is long and exhausting.
Start today. Click here to learn more: https://findingcoopersvoice.com/2017/03/20/getting-medical-assistance-medicaid-disabled-child/
Get on the waiting list for a Grant or a Waiver
Many states offer waivers and grants to keep medically challenged and complex children at home.
States like Minnesota recognize the absorbent costs that go into raising a child with special needs. They also recognize that by helping families financially they can keep children out of hospitals and institutions. This is where waivers came in.
For example a Development Disability Waiver provides adult day care, caregiver living expenses, case management, day training and habilitation, homemaker, prevocational, residential habilitation, respite, supported employment, extended personal care assistance, 24-hr emergency assistance, adult day care bath, and assistive technology. These are just a few of the services a waiver can help with.
Many counties have waiting lists. Call your social worker and ask to start the evaluation process for a waiver.
I was told when Cooper was six that we wouldn’t get a waiver until he was 18 years old. That’s how long the waiting list was. I pushed. I advocated. I refused to give up.
Cooper received his waiver a little less than a year ago and our life has SIGNIFICANTLY improved. We use PCA services, home modifications, clothing modifications, etc.
Also, ask about parent pay.
Free diapers after age four
If your child receives Medical Assistance know that diapers are free after age four. I didn’t know this until Cooper was five. No one told me. A fellow mom eventually told me. I felt cheated. My son wore size 7 diapers. They were impossible to find and so expensive. He had terrible constipation issues and went through 20 diapers a day. Click here to learn more: https://findingcoopersvoice.com/2017/01/27/diaper-options-for-a-6-year-old/
Reimbursements are available
If you pay a premium for your child to receive Medical Assistance in the state of Minnesota AND you pay a premium for private health insurance (so our child is double insured) you may qualify for health insurance reimbursement. The qualifying factor is if your health insurance pays MORE than Medical Assistance.
Some years we qualify. Some years we don’t.
It’s a nice chunk of money to receive back though. The program is called Cost effective Health Insurance. Click here to learn more:https://findingcoopersvoice.com/2017/05/17/cost-effective-health-insurance/
If your child receives Medical Assistance you can get reimbursed for medical transportation mileage. The amount is small and SO MUCH work and may not be worth it.
We drive Cooper five days a week to therapy and to countless other appointments. The mileage reimbursement comes from a company called MTM and the reimbursement is a lot of work. Check it out though.
Click here to learn more: http://www.mtm-inc.net/mileage-reimbursement/
Research other options besides public education
When Cooper was nearing Kindergarten age I started freaking out. I was so afraid to leave the comfort of an autism specific center and my gut told me that public education wasn’t going to work.
I spent hours googling trying to find other options for education and therapy. Nothing.
I asked the school and they offered even less information. I felt like there were options but everyone was keeping it a secret from me. It was weird. After a few months of school not working I finally found other parents that told me all about alternative schooling.
If public education isn’t work don’t give up. Don’t settle.
Find in-home help
PCA is great. A PCA is a personal care attendant. Similar to a babysitter but trained to work with a child like yours. They are also paid more.
Again, PCA services are great. When it works.
Finding, hiring and retaining good staff that you can trust to work with your child can feel impossible. I encourage you to reach out to your child’s school to find good people.
If that doesn’t work call the local colleges and ask to speak to the Speech Therapy and Occupational Therapy departments. Good help is hard to find in general. Good help can feel impossible to find when your special needs child is involved.
Good luck. And don’t give up. Help is out there. We made it a priority last year. It has been life changing.
Get a speech device
Is your child nonverbal? Or close to it? The best thing we ever did for our son was getting him a speech device.
At first I was so scared. I thought it would limit and impact what little communication he had. I worried about bullying. I worried about trying to implement ‘one more thing.’ While it wasn’t easy, but what really is, giving him a voice was life changing for him. Meltdowns decreased. He joined the ‘world’ in a sense. He could communicate.
Here are two posts that I wrote about speech devices. Getting started with assistive technology and how to borrow a device from your state.
These ten pieces of information significantly changed our special needs world. And like I said…not one of them was offered to me in a typical manner. I had to research them all on my own. Which to this day still seems so bizarre to me. Help is out there. It should be public knowledge. But it’s not. It’s like it’s a secret and we should consider ourselves lucky if we know.
Now that you know…pass it on! We are all in this together!
Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.
- Encourage play and social interaction. ...
- Imitate your child. ...
- Focus on nonverbal communication. ...
- Leave “space” for your child to talk. ...
- Simplify your language. ...
- Follow your child's interests.
In severe cases, an autistic child may never learn to speak or make eye contact. But many children with autism and other autism spectrum disorders are able to live relatively normal lives.
- Integrate autism into everyday conversation. ...
- Set the stage for a positive conversation. ...
- Focus on strengths, challenges and differences. ...
- Let them know there's help and community. ...
- Be ready for your child's reaction and questions. ...
- Keep the conversation going.
Her name is Kate Swenson, and she is the mom of three boys. Mary Barbera: Her oldest son, Cooper, has severe non-verbal autism, and Kate is the author and owner of Finding Cooper's Voice, a website and a community that shares the secret world of severe autism.
Applied Behavior Analysis (ABA)
As the most commonly used therapy for children with autism, ABA develops social skills, improves language competency, and enhances good behavior using positive reinforcement techniques, meaningful rewards, and consequences.
Although typically developing children generally produce their first words between 12 and 18 months old (Tager-Flusberg et al. 2009; Zubrick et al. 2007), children with ASD are reported to do so at an average age of 36 months (Howlin 2003).
There is no scientific empirical support for the notion that mothers cause their children's autism or that they lack reflective functioning and are insensitive to their children's needs (Deslauriers, 1967; Keen, 2007). Indeed, it is widely accepted that mothers are not the cause of autism in children.
Research indicates that stressful and traumatic life events are an underlying risk factor for virtually all the comorbid psychopathologies that are common in people with ASD (APA 2013; Mannion et al. 2014).
- “Don't worry, everyone's a little Autistic.” No. ...
- “You must be like Rainman or something.” Here we go again… not everyone on the spectrum is a genius. ...
- “Do you take medication for that?” This breaks my heart every time I hear it. ...
- “I have social issues too. ...
- “You seem so normal!
“High-functioning autism” isn't an official medical term or diagnosis. It's an informal one some people use when they talk about people with an autism spectrum disorder who can speak, read, write, and handle basic life skills like eating and getting dressed. They can live independently.
- Dan Aykroyd - Actor and Film Writer. ...
- Albert Einstein - Scientist & Mathematician. ...
- Daryl Hannah - Actress & Environmental Activist. ...
- Anthony Hopkins - Actor. ...
- Heather Kuzmich - Reality TV Contestant & Model. ...
- Tim Burton – Movie Director. ...
- Henry Cavendish – Scientist.
Kate Swenson is the creator of the popular and inspiring blog and Facebook page Finding Cooper's Voice. Her mission is to create a safe space for families of children and teens with special needs to come together and laugh, cry, and support each other.
Finding Cooper's Voice: About Us. I'm Kate Swenson. I'm a proud working mama of four living in suburban Minnesota although we will forever call the North Shore home.
PaxMedica Inc., has announced that PAX-101 (IV suramin), an investigational drug being developed as a potential treatment for the core symptoms of autism spectrum disorder (ASD), achieved marked and sustained improvement in several efficacy assessment measures in its Phase II trial.
Hobbies such as collecting stamps, playing cards or board games, drawing and photography can also provide opportunities for enjoyment, as well as increased self-confidence and motivation individuals on the spectrum.
Bananas. Besides being an all-time children's favorite, bananas are super rich in magnesium and potassium. These minerals are known for their ability to relax tight muscles, which is excellent for autism stiffness. Bananas also contain amino acid L-tryptophan, which gets converted to 5-HTP in the brain.
The researchers found that, in fact, most of these children did go on to acquire language skills. Nearly half (47 percent) became fluent speakers. Over two-thirds (70 percent) could speak in simple phrases.
Recent studies, however, indicate that as many as 80 percent of children with autism can learn to talk. One such study in 2006 showed that toddlers who received intensive therapy aimed at developing foundational oral language skills made significant gains in their ability to communicate verbally.
The study brings hope to those parents who worry that children who are not talking by age 4 or 5 are unlikely to develop speech at all. Some children with ASD develop meaningful language after age 5. "There is a burst of kids in the 6- to 7- age range who do get language," Dr. Wodka said.
Speech-language therapy addresses challenges with language and communication. It can help people with autism improve their verbal, nonverbal, and social communication. The overall goal is to help the person communicate in more useful and functional ways.