Medicaid and the Special Needs Child

As most parents of special needs children know getting services is a challenge. Half the time you don’t know where to get them or how to get them paid for. The answer, Medicaid.

I am sure many other parents, including myself, have said to themselves or even been told by agencies that they do not qualify for Medicaid because they exceed the income requirements. And you would exceed the requirements if you apply for the wrong kind of Medicaid like so many parents of special needs kids have.

There is Medicaid intended for low-income families who can not afford medical coverage and then there is Medicaid for Developmentally Disabled children and adults. This is the kind of Medicaid you want to apply for. This form of Medicaid qualifies an applicant based on the degree of their disability not income. Be sure to mention that when you pick up an application. Applications can be picked up at your local social services office.

Photo courtesy of OPWDD’s website

Once you have been approved for Medicaid then you need to get Medicaid waiver and the agency you want to contact then is The Office for People With Developmental Disabilities or OPWDD. They can help you get approved for Medicaid also if you are having a hard time navigating that.

Here is a link to New York’s OPWDD’s website;

http://www.opwdd.ny.gov/index.php

If you are in a different state just google or search OPWDD and your local one should pop up. If not just search your state and OPWDD. Your local social services department should also be able to guide you toward some contact numbers for OPWDD as well.

You will still have to do a lot of the research for programs and services on your own as well as stay on top of your case to make sure you are getting all you can from it but OPWDD will open the door for many services and funding.

Hope this helps some of the confusion I’ve witnessed out there, I know it was confusing for me at first. If you have any questions feel free to post in the comments. Good Luck

-JRED

Autism and Preparing for a Sibling: Day One

As some of you may have read before I am expecting my second child. Something I didn’t think was an option for a while. My son J has kept me busy enough for the past 13 years, the idea of growing our family seemed like an impossible dream. However, J’s progress has been so consistent and reassuring that I finally felt like our family is ready to grow and J is ready for a sibling.

One of J’s biggest autism related challenges is his auditory sensitivity and anticipated anxiety from triggers like babies and small children. So bringing a major trigger into our home as a permanent presence has everyone in my family a little worried, myself included.

To sedate the worry I’ve been trying to keep J as informed and involved in my pregnancy as I can. He has attended sonograms and doctors appointments with me, he reads his favorite Dr. Seuss books to my belly, and we discuss what being a big brother will be like. This of course is all conceptual and watching him have outburst because of small children as current as today is not the most reassuring sight.

While visiting my 93-year-old grandmother she shared a great idea with me, getting a tangible baby doll that coos and cries to get J used to having a baby in the house.  So thanks to grandma’s sage wisdom we have been conducting a little experiment with J.

Day One:

My parents dropped off a doll they found in Target, unfortunately most baby dolls are girls and J having a baby brother we decided to make the baby look less gender specific. He was very excited when he saw the baby doll in the box, and a look of curiosity turned his lips into a sly smirk. I explained to him that this was a pretend baby doll for him to practice being a big brother.

I showed him how to hold the baby and the importance of supporting the head. He did surprisingly well and was unexpectedly gentle with the doll. He was so happy and excited, when he put the baby doll down he ran, laughed, and jumped around the house. Tomorrow we will turn on the sounds, hopefully the enjoyment of his practice sessions continues.

Would love to hear feedback from other parents who took steps to prepare an older child on the spectrum for a sibling, ideas, experiences or even funny stories.

-JRED

The Speed of Learning. Slowing Down Children W/ Autism to Promote Comprehension and Retention

We all learn through repetition. This is a universal fact even for my son who is living with Autism. However the process of repetition for a typically developing child and a child on the spectrum differ greatly.

When I was a kid, I would watch my favorite movies over and over again. My family would have been delighted if the tapes magically disappeared, I watched them so many times they could recite the whole movie for me. I watched those movies all the way through and when they finished I would start it over from the beginning and watch them again. I was teaching myself through repetition.

My son does the same thing however with his own twist. He will watch a video on YouTube and when he gets to a part that he really likes he will run it back again and again, oh yes and again. He will do the same with his DVDs and MP3s. At first my initial reaction to this behavior was to stop him. It is very irritating and does not seem productive at all, and almost looks like stimming.

When I started to home school him I had the time to sit down and really observe this behavior. I noticed there was a difference between stimming and this kind of repetition. There was substance and information he was learning in these five second sound bites he was creating. I started to think if I could rewind as easily as he can and manipulate my VHS or cassette tapes as easily, would I have paid attention to the whole piece or fast forwarded to my favorite parts and repeated them over and over as well?

Most children on the autism spectrum are taught through ABA or Applied Behavioral Analysis. Which is a highly repetitive form of drilling. Which was exactly what my son was doing for himself. This is done because most children on the spectrum appear to lack the attention span that is required in a traditional lesson. I was taught a whole lesson as a child in school. It had sections that we moved through all week and then it all came together at the end for a review and test. Maybe that was why I had the attention span to watch my movies a whole time through and absorb the parts I really liked without pinpointing and repeating them. I was taught to learn this way. Maybe the lack of technology to support such a fast paced way of learning also kept me focused on the whole rather than a part.

So I decided to try an experiment with my son. The next time I saw him watching YouTube I stopped him from skip-repeating, and sat down with him. I asked ” J can I watch your video with you?” He obliged. He was watching someone sing “The Star Spangled Banner”. I started it from the beginning and when he went to skip-repeat I stopped and said ” wait, let’s watch the whole thing and then we can start it over.” He wasn’t sure what I meant by this and I had to stop him similarly several times before the five minute video was over but, when we restarted the video he understood and was very happy. His behaviors settled and he seemed to focus more as he awaited his favorite parts.

As much as I would love J to watch his videos from start to finish and take his time to process the information, it’s just not what he is accustomed to. Life is fast paced around him already from the way he naturally processes sensory.  Advances in technology and a learning style of ABA have reinforced this express form of processing information, but it doesn’t seem to leave room for comprehension or long-term retention nor real life application. After a year and a half of homeschooling and my constant redirection aka nagging, he knows now what I mean when I say “watch it from start to finish.” He will redirect when I ask him to but does much better when I take the time to sit with him, slow him down, and discuss what he is watching.

I was surprised how open-minded and welcoming he was to my suggestion of slowing down and watching something all the way through.  Sometimes it gets on his nerves because he wants to watch his videos at his pace and it seems to feel very unnatural for him to sit so still and be so focused, but he understands and retains the information better when I do this for him.

We are always reminding J to slow down, during homework, reading, prayers, brushing his teeth and it’s seemed to help him better those skills. Sometimes in our fast paced lives our children pick up on our haste and function at the same speed. Do you find that you need to redirect or slow down your child on the spectrum or yourself? How receptive are they to slowing down? Would love to hear about ways you slow down your child for added retention or even if you have the opposite problem.

-JRED

Resource on Navigating Special Education in New York

Just wanted to share this link my friend Lisa passed on to me. It’s a great outline for all things Special Education from the start of the process to, legal rights, services, timelines and even sample letters.

I live in New York so not sure how helpful this maybe to out of state folks, but you can always check your local government’s website for information on what they provide and what your are legally entitled to as far as special education services for your child with special needs go.

Special Education in Plain Language

Understanding Your Limits When Raising a Child With Autism, Being Logical Not Fearful.

I think one of the most common things parents of children with Autism feel but rarely identify correctly is fear. Fear of the unknown; how will my child react? Fear of society’s opinions; how will people around me react? Fear of failure; what if I can’t handle him?

No one wants to admit they feel fear but when I can identify something I fear it allows me to take a deeper look at the feeling and ask myself why. When you’ve limited yourself in the past because of fear, like I have, it is hard to know your limits once you overcome that. Excuses I’ve used in the past that were mostly fear based, maybe logically sound reasons to skip on an activity now. However, since I used these reasons as excuses in the past, I will second guess myself and feel as though I need to push past and ignore what maybe an instinctual self preserving, healthy reaction.

When my son’s behaviors were at their worst (I hope), I would rather stay home and avoid anything that might trigger this behavior. I usually did some thing fun and active to make up for the opportunity he had missed, but I started to notice it wasn’t always his capabilities holding us back from new experiences. Sometimes it was mine. Determining the difference in the two was challenging, sometimes a situation was too much for J and I was right to skip it, but sometimes my fear to confront something new with him was what kept us from an opportunity.

I got over this fear by realizing that in the grand scheme of things it’s just a moment, and if it goes awry then at least we tried, and if it goes smoothly, Woo Hoo! I was putting a huge amount of pressure on myself and J, pressure to live up to what society deems as acceptable behavior from a child and a parent.

Unfortunately this new-found confidence bites me in the butt sometimes. I push too much, to the point where we are all exhausted or spread to thin. As it is important to have confidence in the approach of new experiences it is also important to know my limits. It’s ok to say no to some things as long as it is for the right reasons, safety always being the paramount one. If I don’t feel I can safely approach a new experience because of lack of energy or patience that’s a good reason to skip. It is also important to rectify these reasons if possible, so that on the next opportunity we will be ready.

As I get closer to my third trimester of pregnancy my body is forcing me to realize I am still a human being although I think I have super powers sometimes 🙂 I need sleep, I lack patience, and I can’t physically do things the way I could in the earlier months and before pregnancy. And that’s ok!

One of the best super powers we all have as parents is that little intuitive voice that tells us what we should really be doing. Perspective also helps the guilt and FOMO: 1. These months will pass 2. I will get my energy back, but only if I’m healthy enough to get there. 3. We will take part in the opportunities we are meant to. 4. Life is long if I approach it with that belief.

So I don’t feel as guilt ridden when I have to pass on an opportunity now because I know I am doing it for the right reasons, not fear of the unknown but for my physical and mental health as well as the safety and enjoyment of my family. And that little intuitive voice agrees.

Would love to hear about any times you found yourself limiting your child or yourself because of fear and how you overcame it, or if you’ve had any fears you just can’t seem to conquer. Maybe myself or the community can help. Sometimes it helps just to write them, you are only alone if you want to be.

-JRED