Good Grief! Dominoe, Autism, and Money

We finally have had to come up with some limits in the Dominoe buying clothes saga. She wants to buy clothes EVERY day. Then she tantrums when I say no. With her little autistic self!

Anyway know she can only buy clothes once a week.

She wants me to get a ‘card’ for her now. Oy veh! I’m going to have to think about this….

More Dominoe, Autism, and Money

So now Dominoe wants a pair of shoes. I tried really hard to convince her to wait till tomorrow after work to go get shoes. She was insistant.

I could tell by the look on her face and the way she looked out of the side of her eyes….She had enough today.

Finally she said if she waited they (the shoes) might be gone!

I told her if she pitched a fit in the PCAs car they would come home without shoes. I told her if she pitched a fit (we call it a floor show) in the store they would come home without the shoes.

She got her shoes.

Although I am excited she has finally figured out she has to have money. Now what? She cant spend like this forever.

More Places to Get Equipment and Therapy

Of course there are the typical systems for people to get equipment. It is possible to get medically necessary equipment with a prescription through Medicaid if your family qualifies. Unfortunately to qualify your family is usually poor. You may be surprised at what your states definition is of ‘poor’. Some states also have a system that some parents can ‘buy’ into Medicaid when they have a child with a disability.

In Louisiana a person automatically gets Medicaid if they receive Social Security (SSI). In other states there are two separate processes. Some people can have insurance and Medicaid. The private insurance is the primary and Medicaid is the secondary. It gets complicated and requires strict attention to the paperwork but it is possible to get equipment this way.

Your state also has an office responsible for, as much as I hate to use this term, Mental Retardation. It is called different things in Louisiana it is called the Office for Citizens with Developmental Disabilities (OCDD). In some sections of Louisiana it can also be found in the Human Services District Office. This is another resource for equipment. These offices have a small amount of money that can be allocated, at times, for equipment or therapy for your child.

Parents have discovered another way to get equipment that they need for their children is to trade equipment with other families. Some trade groups just put up what they have to give and let anyone else that needs that equipment or tool get it. Other groups have a point system and keep track in some way of what they trade. Sort of like a babysitting co op. The secretary usually gets a small amount with each exchange for doing the math and recordkeeping. This system appeals to some people because they get ‘value’ for what they have. Other people don’t care.

Out of The Ordinary Places to Get...

Out of the Ordinary Places to Get Needed Equipment for Children with Autism

(or any other disability for that matter!)

At some point in time most parents of children with autism will realize that they need different pieces of equipment or tools to work with their child. This article explores some of the ways parents have found to meet those needs.

After working with therapists many parents choose to buy specific pieces of equipment. Of course this is the easiest and probably the quickest solution. The only suggestion is not to forget to use the good shopping techniques you have learned in other areas of your life. Just because some of the equipment you need might be considered medical equipment does not mean you can not shop around for the best price.

Call several places or look up several prices online. Do not forget to ask for a discount. If buying online and you are buying several items will the company give you free shipping. Also check if there is a just as good piece of this equipment that is not considered medical or therapy. A ball pool can be expensive if bought through a company that supplies medical equipment and quite a bit less expensive when bought as a toy.

Another suggestion is to use skills you already possess. Can you barter those skills for needed supplies? Of course this might only work with a physical company but may be well worth your time. Small medical supply companies might be more than willing to barter typing, accounting, or even cleaning skills for equipment.

Do you know other parents who have children with autism? Can you trade items which your child no longer uses? If you know parent of older children would they be willing to ‘hand me down’ old equipment. Of course you need to make sure the equipment is appropriate and in working order. Bring it to your therapy provider and ask them to check the item out.

Another possibility is to look for local organizations which operate a loan closet. Many disability organizations operate a loan closet. Those closets can have pieces of equipment that are reusable as well as one time use equipment. One of our local loan closets at times has special formulae and the larger than baby size diapers. Of course you can find equipment that you can try out or keep indefinitely as well.

Response to My Three Questions

I am so excited someone responded! As promised here is their answers in their entirety.

Thank you for visiting www.HealingThresholds.com. My answers follow.

Do you think people with autism need to be "fixed'?

No, not necessarily. Autism is a spectrum disorder and there are a variety of symptoms that are associated with autism. Some people have severe and painful GI symptoms and I believe those symptoms should be treated and the underlying problem “fixed.” Some people have self injurious behavior and those people should be helped. Some children are bullied and they deserve to understand bullying and be taught how to address it within the system.

Most of all, a diagnosis of autism can be difficult for the entire family and I think that all aspects of the family need to be healed. Sometimes the healing may involve an evolution of the parents so they learn to meet the child exactly where that child is and love the child for who s/he is and not who they want the child to be.

2. Do you think therapies for people who have autism are overpriced?

Mostly no. Caring for a child with autism is extraordinarily resource-intensive. It requires buckets full of time, energy, love, and money. I do not believe that speech therapists overcharge or occupational therapists overcharge or art therapists overcharge. In most cases supplements can be purchased for a reasonable price.

There are, however, treatment programs that are extraordinarily expensive. These include some ABA programs as well as some of the more intensive implementations of the DAN protocol. While it is hard for me to call them overpriced, I do think that parents should be very thoughtful when spending their precious resources. In my mind this means having a very specific and clear understanding of what the treatment goals are and how long the treatment should be continued before some progress is seen on the treatment goals. There is not time or money enough to do everything for every child. We also know that not all treatment approaches will work for every child. Therefore parents, therapists, physicians, and teachers need to have honest discussions about specific treatment goals and which treatments have the best odds of achieving those goals. There should also be honest discussion about when it is best to abandon a treatment because it is not advancing the child.

3. How do I buy all the equipment I am told is necessary?


What equipment? Who tells you what is necessary? This goes back to the answer to number 2 above. No parents should be put in a position of thinking that if they can’t afford a piece of equipment their child will not do well. Therapists, physicians, and teachers need to support the parent so that the parent feels s/he is healing the child with the resources that are available. Healing Thresholds is designed as a free resource to help parents sift through all of the different opinions and ask hard questions of the different members of the therapy team. When parents of newly diagnosed children write me asking similar questions, I point them to this page: http://autism.healingthresholds.com/new-diagnosis-of-autism
These are great questions. Thank you for giving me the opportunity to weigh in.

- Lara

Lara C. Pullen, Ph.D.
CEO and Founder
http://autism.healingthresholds.com/
Connecting community and science to heal autism.

Autism and The Jelly Shoes

Being a mother of five children, I always had to watch our budget especially to afford some of the other things associated with a child with autism (or two children with autism ). One of the things we learned early on was to make use of hand me downs whether siblings or friends. One of my friends gave my daughter a whole grocery bag of Jelly Shoes, in every color. My 20 year old was excited. She was the only one with a foot small enough for these.

Of course the first pair my daughter chose was a bright red pair. Some of them had buckles. We have not bought shoes with buckles in years. As she tried to get them unbuckled she became frustrated. After fussing at the shoes for a few minutes she handed them to me. I asked if she wanted help and she said yes. This skill is a big improvement for her.

Then we went to getting the shoes on her feet. They slid on easily. Unfortunately there was that buckle again. She worked on it and worked on it. She got more and more frustrated. Finally she started talking to the shoes. She told them they were crazy. She started screaming at the shoes and cussing them. I sat across the room from her and watched.

Somewhere in the screaming phase I told her she needed to ask if she wanted help. This is a skill we have been working on for a long time and as you know a very hard skill for people who have autism in general. She ignored me!

After screaming at the shoes for awhile she started hitting them. I seriously considered making her let me help her at that point. I decided against it because she really was not hurting herself or any one else. She also was not damaging property. I did mention she could ask me for help again. She told me no! After much rolling around on the couch and screaming, she did get the buckle fastened.

Thinking about it, there is really so little she can control and SHE DID IT! She really was not doing anything that typical adults do not do every day. Get angry, start cussing, and start slapping things around.

Views of Autism

Yesterday I saw a notice from Ari Ne’eman from the AutisticSelfAdvocacy Network. He has a list I belong to at
http://www.autisticadvocacy.org
which I highly recommend. The notice spoke of Dr. Eric London’s resignation from one of the AutismSpeaks committees. His letter spoke of decisions being made with out input from the scientific committee. This was the committee on which he was a member.

This brings up some interesting questions and thoughts.

1. Do you think people with autism need to be “fixed”?
As you may know from previous posts I have two daughters. One has autism and one has asbergers. No I do not see either one of my children as someone who needs to be fixed. On the other hand do I want to maximize all of my daughters’ experiences? You Betcha!

2. Do you think that therapies for people who have autism are over priced?
Sometimes. Parents of children with autism have to be very creative to keep their children engaged. I am not sure they should pay for every therapy that comes along. That is a really good way to break the budget for years to come, especially without investigating the free resources available. Then supplementing those resources with their own resources would be wiser.

3. How do I buy all the equipment I am told is necessary?
There are many ways to cut costs of equipment. Make some your self, borrow some, and explore agencies set up to help with the costs. Some parents even invest in one or the others education to learn how to do therapy themselves. I will make a separate post on this at a later date.

I would like to see other blogs on autism respond to these questions, particularly the first question. Knowing exactly what mindset people come from is so important in the area of autism and aspergers. So how about it?

Explaining Autism For Your Children

Some of the earliest conversations I can remember having with the two older boys about my middle daughter were about what to say to their friends. Being new to this myself I was surprised and concerned about their obvious discomfort as well as my own. Finally we came to the agreement they could tell their friends she was just a little slow. This seemed to satisfy them for quite awhile.

When my oldest, Sam, was about eight or nine he asked if they were going to ‘catch’ what she had. Of course I reassured him people did not catch a developmental delay from a sibling. I explained every once in awhile someone got sick and were left with a developmental delay. If you could have just seen the way he looked at me sideways out of the corner of his eyes when he asked. Many years later I learned these were perfectly normal reactions from older siblings.

Some younger siblings are in many ways less tolerant than older siblings. They grow up seeing you spend extra time tending to the older siblings needs. As they start to pass their sister’s abilities, they are very upset when she seems to be able to do things or act in ways they are not allowed. It is very difficult to explain the many choices they will have a head of them which she will not have. As one of the younger ones said just the other day, “That’s too long away. This is now!”

I have tried several things to help with this situation. One of them is books about children and books by children or teenagers. There are books about autism and there are books by the siblings of children with autism. Another newer idea is several videos on YouTube that have been made in recent years. Some of them are surprisingly good and challenging to other children/adolescents. I have found organizations, such as the Autism Society, willing to lend me videos from their libraries. Borrowing videos or books is good for the budget when possible. The videos and DVDs tend to be expensive so be sure to return them. All of these ideas work with your own children or children in your child’s class.

Autism and Food Budgets

Many children with autism are picky eaters. I have one of those children. One of the techniques I learned was to keep a list of things she would eat, even if she only ate them occasionally.

I was surprised. There was variety in what she ate. The list helped me feel better that she did eat more than I thought she did. Using the list to routinely offer her food she only ate sometimes also helped keep her diet as varied as possible.

I also was able to keep better control of our food budget. I knew which items to watch for coupons and/or sales. There was less waste since I was very selective about new foods I wanted to introduce. With the help of my list, I also choose foods similar in taste or texture to what she already would eat.

Here is one of my children’s list:

Chicken Nuggets
Breakfast Burritos
Chicken and Sausage Gumbo with Rice
Cheese Nachos

Apple Juice
Orange Juice

Sprite

Raw Vegetables with Ranch Dip

Whole Nuts

Cereal

Yogurt
Milk
String Cheese

Any sweet type snack cake

Things I Wish I Knew In the Beginning

1. Get as much Speech Therapy as I could for my daughters, as often as I could get it.
2. Touch my children with autism as much as I could. I wish I knew to hold them around the middle with hand to skin touch. I would have stroked their cheeks and hands more. I would have given my children as much skin to skin contact as possible.
3. If you have insurance and can afford Speech Therapy, Occupational Therapy, and Physical Therapy, do it.
4. If you have Medicaid use it to get those same therapies.
5. Each state should have an entity that provides early intervention. In Louisiana it is called EarlySteps. Sometimes you can find it at the State Department of Education. Sometimes you can find it at the Department of Health and Hospitals. States provide some or all of the services free.
6. If your child is older than 3 check with your local department of education. They can provide specially designed instruction and all those therapies free.
7. Call your local United Way. Some United Ways provide monies for agencies to provide free services.
8. Contact your states Parent Training and Information Center to speak to other parents and ask about resources for therapy.
9. The Department of Health and Hospital in your state may have funds to help pay for therapies. It is sometimes located in the Office for Developmental Disabilities and Mental Health. In Louisiana it is in the Office for Citizens with Developmental Disabilities (OCDD).
10. Plan for your child, no matter how sever their disability, to have a job at better than minimum wage with benefits. A person needs a job to hang their day around.

Gift Cards Rewards For You Because of Autism

At the recent training in Austin, Texas, I ran into these people. The survey is simple and they will send you a gift card for your help. This is such an easy way to contribute to research about autism. Please consider filling out the survey if you have a child with autism. I also got both of my gift cards already!
Thanks,
Mylinda

From: "Liu, Ting"

You can fill out the survey on line by clicking the link below. A $10 gift card will be mailed to the parents upon completion of the survey. Look forward to hearing back from you. Thanks.
http://www.surveymonkey.com/s.aspx?sm=2V3cpuKQaxlbRkmAXJRO_2bA_3d_3d


Ting Liu, Ph.D.
Assistant Professor
Department of Health, Physical Education, and Recreation
Texas State University-San Marcos
San Marcos, Texas 78666
Voice: 512-245-8259
Fax: 512-245-8678
Email: tingliu@txstate.edu
Website: http://www.hper.txstate.edu/People/Faculty-Web-Pages/Ting-Liu.html

Getting To the End...

14. A lot of sensory integration toys can be bought at the ‘Everything Is a Buck’ store or a similar store in your area for – a dollar. Toys that light up, make sounds, or have the ‘spaghetti’ feel to them. Do a little research on the internet and then go see what you can find with similar characteristics.

15. Talk to other families with an upbeat attitude about autism. Avoid parents who have the ‘it just gets worse mentality’. Autism is but one characteristic of your child.

More of My List

I think I like lists...

10. Ball pits can be found online, but get well-reviewed ones.

11. Avoid autism toys that say therapy on it. Usually you can buy the same exact thing at a much cheaper price by surfing www.amazon.com.

12. Indoor hammocks, mini trampolines and rocking chairs could be purchased on www.ebay.com cheap or gotten for free from www.freecycle.org.

13. Homemade play dough can be used in sensory activities, and egg-less cookie dough can also be used if they put play dough in their mouth. It’s cheaper than therapy play dough and better for your child if they put it in their mouth.

And Again...

Yes, I know it is taking me a while to get this together. I will be more diligent about it...

6. Avoid surfing the Internet too much. There is a lot of misinformation on the web. Nothing you did or didn't do caused your child's autism. You are not to blame.

7. Use your library before deciding which books go into your home. Check with local disability organizations like Families Helping Families to see if they have free lending libraries. Some books are by parents whose children really had much milder autism than they realized and some books are very negative.

8. "1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders" by Veronica Zysk and Ellen Notbohm is great. This book is a surprisingly thin book for all the wealth of information it has. The book has loads of budget sensory therapy ideas and more.

9. If your child can read, you can spend hundreds of dollars on specially made social stories or
www.frsd.k12.nj.us/autistic/Parent%20Training/social_stories%20notes.htm
explains how to make them for free.

Autism Therapy on a Budget continued

3. Play therapy can be a lot of fun and it doesn't have to cost a lot. Autism Games has a lot of low cost ideas at http://autismgames.googlepages.com/.

4. Evaluate relatives for the characteristics needed to help. If grandma is healthy, loving and can handle your child, you could have grandmother trained to do therapy at home. Nieces and nephews might be glad to help, with your supervision of course. You might want to pay a little, if you can. Books like "Engaging Autism" can be a place to start.

5. There are inspirational interviews with famous Temple Grandin on www.npr.com for free. Just search her name.

Be patient this is a work in progress!

Autism Therapy on a Budget

I can remember, when my child was diagnosed with autism, investigating all the therapies and options available for her. And boy, were some of them expensive! I was a single mom and I had to so the best I could with what I could get. I would have loved a list like this back then. There are a lot of suspicious ‘therapies’ out there, be careful. In one treatment, that cost $5,000, you were given activities which you could have gotten from a $13 sensory integration book and a booklet of $5 scratch and sniff stickers.

Although many people with autism will need lifelong care, they can work, marry, and lead normal lives on a variety of levels. There are even people with autism who are geniuses, but have problems with sensory pain which causes outbursts. The future of your child still lays open before them!

1. Use free school resources like early intervention classes. Use the school speech therapist or any other therapist your child needs. Some people have moved because the school cannot provide the speech therapy, physical therapy, and occupational therapy which their child needs.

2. ABA can be expensive but you can do matching games on your own and add that to a school based play intervention with speech therapy. You can mix this with other free and low cost therapies. You can make your own flash cards by searching the internet. Laminate the cards for wear and tear.

I will add to this list in the upcoming days...

Autism Therapy On A Budget Continued

And Again

More of My List

Getting To the End

Tip

If you haven't tried Vocalpoint, you might want to sign up at this site. They are going to pay me $75.00 to open my mail for 6 days and write in a journal about it. I open my mail everyday now for free! They have also sent me free coupons or large coupons for products to try.

Introduction

Hello!
I hope to be able to share tips I have acquired being a single mom and raising a child with autism and a large family. Being in a family with a member with a disability has it's own techniques to learn. Being in a large family has budgeting considerations. I plan to combine both of these viewpoints in posts to come.
Till next post,
Mylinda