Autism For Parents

28 May 06

“I can’t ever die….” (or, Fear of the Future)

Filed under: Action,Autism,Confusion,Planning — Brett @ 1516

Not long after a child is diagnosed with autism, and the realization that the child will quite likely require lifelong care/support, many parents go through a phase of fear about what will happen once the parent dies.  Because of the incredible amount of effort and involvement required of parents as children grow, it is common for parents to believe that they are the only ones that can provide their child what they need to grow and thrive.  The comment, “I can’t ever die, what would happen to my child?” is all too common among parents of autistic children.  This unknown future adds an extra level of stress to parents who are already at the breaking point of trying to figure out what is happening and what they can do for their child. 

Though this will be an ever-present anxiety for parents, there are things that parents can do to help ease this stress.   In most cases, these are things that all parents should do anyway.  Some things you should do when your child is still a minor, in no particular order:

  • Establish a Special Needs Trust for you autistic child
  • Maintain a current Will, that includes guardianship for your child.
    • It is important to make sure you discuss this with the people you want to take guardianship of your child
    • The Will should include, as much as possible, the resources (money, etc) that the new guardian will need to help raise your child
  • Ensure you have adequate life insurance, and that your child’s Special Needs Trust or designated guardian are the beneficiaries
  • Maintain an updated (annually is probably good) file of paperwork related to your child’s treatment to date, and keep it with your important personal documents (like your Will).  This file should include anything related to diagnosis, meetings with school district to establish need for support, past IEPs, etc.  (This is also very useful to have for yourself while you are alive, and will greatly ease the transition from one school district to another if you ever move.)

This is not an all-inclusive list, but provides some basic guidance.  Obviously, you should consult an attorney qualified in the areas of Special Needs Trusts and Wills (may not be the same), as well as a tax attorney/consultant to understand the tax implications of the trusts, life insurance beneficiaries, etc.

This can all be daunting, especially when added to the stress and expense of just trying to figure things out in the early days of living with autism.  But this is short-term investment of time and resources that will pay off well in the end.  And once you get this fear out of your mind and dealt with, you can start focusing on the present and helping your child live in the world.

What happens when the autistic child becomes and autistic adult?  I’ll cover that in a later post.

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31 Comments »

  1. are there any speech funds for autistic children? Are there any good trust funds for autistic children?

    Comment by Carmella Shumate — 6 Aug 06 @ 1748 | Reply

  2. Hey, where have you been? Love reading your posts!!! :) Hope all is well.

    Comment by Laura Cottington — 15 Dec 06 @ 1609 | Reply

  3. name cheri boyfriends autism been toegther 8 month meet him basket ball game hear got autism in the brain hurt me so much that going make it cause autism try help him he low autism can wash hair that bad can clear shower bad know what do throught he have autism throught nothing wrong him but say some wrong is brain take him doctor when he was 2 year old throught he was not going make know how got autism dad have autism from is brain act dad die he start speak when he got young doing every thing help him cause love my boyfriends pray boyfriends all really lose my best she die she was very sick boyfriends is sick need help real story this boyfriends life we talk about care no body understand what natashaw been throw son why love them love me care about me lot why love son not beacause had autism cause some one speacial in life not give him family give up on him need know that some love him very much mom to and sister and brother

    Comment by cheri — 21 Feb 09 @ 2216 | Reply

  4. boyfriends get better in life see him go far we going get married soon but there was things we going throw in are life toegther hear things tell things about have other boy in room but not true know autism in the brain
    give boyfriends know going throw hard time right now going throw lot in life make it better made hard in life did not listen him why mad at me have not speak long time know why act this way about me care about him want see die in the street one day hurt me cause love him much autism going get bad off going chruch pray lord other chance see light god like ugly someone try help u walk ways just like that thank that u dont have autism but u do had it tell him lot kid have autism work hard get back self

    Comment by cheri — 21 Feb 09 @ 2222 | Reply

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    Comment by Michael Tim — 28 Feb 09 @ 1747 | Reply

  6. This is a very good article….

    I was a behavior consultant 5 years ago and since have moved on to be a Financial Advisor and many parents dont have these provisions in place for there child with special needs.

    Comment by Behavior Changer — 16 Sep 10 @ 0529 | Reply

  7. Life insurance is necessary that is why i always make sure that i get a reputable insurance company :.;

    Comment by Sublingual Vitamins — 16 Nov 10 @ 1535 | Reply

  8. http://www.autismsupportnetwork.com/news/special-ed-teacher-develops-play-date-tool-those-autism-33982933

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    Comment by victoria — 22 Feb 11 @ 0808 | Reply

  9. Hi there.
    This site really confuses me. Can anybody tell me how I could post something? or maybe how I can email the administrator?
    I am looking for participants in a small questionnaire on parents with children on the spectrum and their views on mainstream school.
    Please please help.
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    nicoleta

    Comment by Nicoleta Pana — 5 Apr 11 @ 0652 | Reply

    • Nicoleta,
      Did you ever get an answer to your questions about this site? I just stumbled upon it tonight and have similar questions. How to blog!

      I’m a mom looking to blog and can’t figure this place out. Would you please let me know? Thanks!

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      Comment by Cindy — 16 Sep 11 @ 2010 | Reply

  10. Hello everyone,

    I’m in a city-wide contest right now to start my own social business and my idea is geared towards helping adults with autism find meaning and fulfillment. Currently there are little to no options available for people with autism once they graduate high school and become adults. With no educational, social or economic outlets, adults with autism are too often relegated to obscurity.

    I have a younger brother with autism, and I have worked as an ABA therapist. I know that my idea is only a step, but I would appreciate your support in bringing this goal to fruition.

    You can view and vote on my idea here:

    http://www.projectwildfire.ca/mediadetail/4272293-CLEAN-PLANET&voter=1

    I’m in third place right now and if I win I will get funding and resources to get my vision off the ground.

    If you can provide me with the contact information of anyone who would be further able to help me out or people who may be interested in becoming apart of this movement that would be amazing.

    Thank you,

    Nadia

    Comment by Nadia Hamilton — 11 May 11 @ 0748 | Reply

  11. This helps alot. Thank you.

    Comment by Wei — 7 Jul 11 @ 2025 | Reply

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    Comment by Chalmers — 14 Sep 11 @ 2256 | Reply

  14. Mothers of autistic children please call 1-855-ZOLOFT1 to get more information about your legal rights if you took zoloft while pregnant OR you can go to http://www.zolofthurtmychild.com. There is new research coming up all the time that links taking an antidepressant (SSRI) while pregnant and autism! You can get help for you and your child.

    Comment by autismxzoloftx — 21 Oct 11 @ 0809 | Reply

  15. Shanesh Colors has launched Map me App an interactive way to identify all 50 states of the USA on the map. It is based on ABA method of intervention delivery to children on autism spectrum or with special education needs. Shanesh Colors uploaded this app for kids with Autism on Google android market which are free for download. Log on to Google Android Market and type Shanesh in Search box to see the list of apps or type in the app name in the search box.

    Comment by Nish Parikh — 24 Oct 11 @ 0056 | Reply

  16. Match Me- Autism Series App is based on ABA intervention to children on autism spectrum and a part of Shanesh COLORS App series. It evaluates the matching skills of player. The player is supposed to Match Alphabet with related picture. Shanesh Colors has launched & uploaded this app for kids with Autism on Google android market which are free for download. Log on to Google Android Market and type Shanesh in Search box to see the list of apps or type in the app name in the search box.

    Comment by Nish Parikh — 24 Oct 11 @ 0056 | Reply

  17. Shanesh Colors Presents Multilevel Spot the Difference game for kids. Identify the differences in the pictures by clicking the picture where they are different. This app is uploaded on Google Android. Log on to Google Android Market and type Shanesh in Search box to see the list of apps or type in the app name in the search box.

    Comment by Nish Parikh — 24 Oct 11 @ 0058 | Reply

  18. My Second ABC App teaches recognition of lowercase alphabets and is based on discrete trial part of ABA intervention to children on autism spectrum and a part of Shanesh COLORS App series. Like this many other apps are uploaded by Shanesh Colors on Google android market which are free for download.

    Comment by Nish Parikh — 24 Oct 11 @ 0251 | Reply

  19. My First Cursive ABC App teaches recognition of cursive uppercase and is based on discrete trial part of ABA intervention to children on autism spectrum and a part of Shanesh COLORS App series Shanesh Colors has launched & uploaded many apps for kids with Autism on Google android market which are free for download. Log on to Google Android Market and type Shanesh in Search box to see the list of apps.

    Comment by Nish Parikh — 24 Oct 11 @ 0253 | Reply

  20. My Second Cursive ABC App teaches recognition of cursive lowercase alphabets and is based on discrete trial part of ABA intervention to children on autism spectrum and a part of Shanesh COLORS App series. Shanesh Colors has launched & uploaded many apps for kids with Autism on Google android market which are free for download. Log on to Google Android Market and type Shanesh in Search box to see the list of apps.

    Comment by Nish Parikh — 24 Oct 11 @ 0258 | Reply

  21. One of my greatest fears is that I won’t be around to care for my daughter. Glad to find this resource!

    Comment by Craig — 1 Mar 12 @ 2208 | Reply

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  23. It’s so great to find online places that give support and info for parents.. I have a 3 year old with severe autism and I am trying to do what I can for him but the fear of him possibly not getting any better or becoming that uncontrolable autistic adult scares me so much.. I know all I can control is what I do today and so right now I’m trying not to think any further into the future.

    Comment by Melissa — 15 Oct 12 @ 1716 | Reply

  24. For a parent with a child who is an adult with autism – Looking for a person/maybe female as a companion for a 23 year old male who has some communication, loves his IPAD who could attend movies and dinners with him on a semi-independent level (an aide/sibling to go with each of them but those people could sit off to the side while the two do their own thing – i.e. order food, eat and hangout together with little assistance).

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