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Thread: ASD Resources for Siblings

  1. #1
    Join Date
    May 2016
    Location
    Texas
    Posts
    282

    Default ASD Resources for Siblings

    Dear SC moms,

    Our son has been going through a rough patch with his anxiety and OCD and his growing awareness as an adolescent that he is different from his peers and siblings. It's been tough. It's also prompted me to talk a lot more with my other children about what is going on with their brother, and I would love to hear your recommendations of books or videos to help them understand autism and OCD as well as to process their own feelings about the whole situation. My special needs son is age 15 and the oldest of 7. I'm mostly concerned about my three children close in age to him (ages 13 and twins age 11). Of the three of them, their reactions vary from being worried about their brother "what will happen to him when he grows up?" to feeling resentful "is autism just an excuse to demand your own way all the time?" with the third child somewhere in between.

    I'd love to hear what you all have found helpful.
    Thanks!
    Catherine

    2018-19
    DS15, 9th
    DS12, 6th
    DS10, 5th
    DD10, 5th
    DS6, K
    DD3
    DS 7 mos

    Homeschooling 3 with MP
    2 using First Form series in school

  2. #2
    Join Date
    Mar 2012
    Posts
    2,249

    Default Re: ASD Resources for Siblings

    Hi, Catherine. I do not have recommendations for sibling books or videos, but we have found prayer helpful for both worry and resentment.

    Praying with the worried child reminds her (and me) to give thanks to God for loving, caring for, and protecting this child all these years and reminds us to ask for wisdom in making plans for and with the child for his good, helping him to be strong and capable and responsible, and loving him in wisdom and grace. We remember that the child is His. We pray that He will keep the child in His good care all his life, keep him in the faith, and allow him eternal rest in Christ at the end of all his earthly days. Prayer keeps this life with the child in perspective.

    Similarly the resentful child (or resentful feelings we all might have) can benefit from prayer. We are reminded that we bear each other's burdens, we are no better than the other person, and we all cause each other grief! We are reminded not to enable or excuse but to do what we can to encourage and strengthen in the weaker child toward his own mature, capable life.

    Helping the concerned sibling set boundaries has been very important here. "His problems are his; he is not you; you are you. Your role is to love him, pray for him, and then go about your own callings in life. As you do this, you serve as a good example and as a cheerful encouragement to him."

    Your words will vary, of course.

    In our house it crosses back and forth depending on which person is having difficulties. Sometimes "I'm worried about Michelle," or "I'm frustrated with Michelle" can be the conversation/prayer starter. Other times I find Michelle huddled in her room concerned about her brother. I need to step into the distressed sibling's world to help him or her pray, rather than fester or fret.

    The best part of all of this is watching the worry and frustration transform to a more compassionate calm, both in the concerned child and in myself. We are then far better able to respond in ways that are more beneficial for the person for whom we are praying.


    Just a few thoughts while you wait for books. Or maybe you will be the one to write them?! They could be your own Social Stories, but for your capable children. If not books, you might consider writing a letter to each of your children about the 15yo. This could be as good and meaningful for you as it is for them. Likely they are voicing your own concerns, even if you have not voiced them. His age, 15, brings many questions for you: Should we become his guardian? Conservator? Can he handle college? Will he marry? Live indeoendently? What will happen to him? As you grapple with your own fears, you will help them grapple with theirs.

    God's peace --

  3. #3
    Join Date
    May 2016
    Location
    Texas
    Posts
    282

    Default Re: ASD Resources for Siblings

    Thank you, Cheryl. Your words are so wise and I’ve been thinking about them all day. Yes, tending to my and their spiritual and emotional health is the first and most important piece. I remembered today the routine I used to have with the three of them when they were little and their brother had regular outbursts. It was kind of like a social story, although I never wrote it down. I would gather them, remind them that their brother has this problem called Aspergers that causes him to get upset, that I will be able to help him, and that afterwards we can do something fun together. We would say a short prayer for him, and then I would put them in a safe area to play while I dealt with the meltdown.

    It’s not all that different now, except that we debrief with them after a difficult experience so they can process their feelings. I like what you said about reminding them that it’s okay and right for them to have their own life path separate from his.

    And then we try to keep up the low-key family fun—trying to keep that family culture positive in the midst of a lot of stress. It’s something I pray about all the time.

    I love the idea of writing a letter to each of the children. ❤️

    As for the informational book or a movie like the one about Temple Grandin, something like that may help because they are wanting more specific reasons why these behaviors are there and what causes them. We’ve had these conversations, but I think they would benefit from some reading and research on their own.

    And then you guessed my next question, which was going to be about guardianship and the future. I should have put off-topic in the title. I wanted to ask how one finds a good disability attorney and how to think about that when we aren’t sure what help will be needed long term.
    Catherine

    2018-19
    DS15, 9th
    DS12, 6th
    DS10, 5th
    DD10, 5th
    DS6, K
    DD3
    DS 7 mos

    Homeschooling 3 with MP
    2 using First Form series in school

  4. #4
    Join Date
    Mar 2012
    Posts
    2,249

    Default Re: ASD Resources for Siblings

    For resources, Temple Grandin might be a good fit! Like your 15yo, she is highly science-minded while struggling with anxiety, obsessiveness, and sensory disturbances. They might appreciate the movie Temple Grandin if they have not seen it. Her newer book The Autistic Brain is brimming with research, PET scans, etc. that you could read and distill, or they could each take a chapter and dive into the book. They will find it fascinating and also reassuring that these frustrating differences are not mere character flaws that he could "fix" if only he tried harder.

    As for an attorney, you might want to set up a special-needs trust, even if you do not fund it. This can help with longterm planning in several ways. The attorney can explain this. We did this for both children when they were early teens. This was a more specialized area of the law, so even though my husband is an attorney he asked an attorney friend to create these for us.

    The guardianship is reasonably straightforward. The key is finding someone likeminded. We almost had a mishap with one woman who was substituted at the last minute and carried with her the big-hearted gushing mindset of "She can do anything she wants; she's amazing; she should make her own decisions!!" (Never mind that at 17-1/2 in the interview my daughter chatted mostly about news regarding the latest American Girl doll.) For your young man you will want someone who understands the seriousness of the conditions despite his high intelligence. Then the person can walk you through the options of full or partial guardianship, conservatorship, etc. You will want to begin this process by 17, if you decide to pursue it, but seek an advisor now regarding his own assets at 15.

    Some of this will vary by state, but you are wise to consider these things right now. If you pursue guardianship, his current doctor(s) will assist with documentation for his needs, such as those regarding needing help making decisions.

    You will be thinking of these things in three categories, all of which are informed by the medical/mental conditions:

    1) guardianship
    2) conservatorship (helping him with his $$ matters)
    3) personal -- where will he live, will he go to school away from home, where will he work

    Depending on answers to above, he may qualify for support in other areas.

    For us the years from 17-1/2 to 22-1/2 were complicated with these matters, but now we all feel as though we have settled into a happy routine that works well for all four of us. Some of my children's adult friends with special needs have gone on to live in ISLs ("Independent Supported Living", one of those governmental oxymoron titles); some have tried that route and failed; some live in a group home; many still live at home with varying degrees of independence; and still others have an apartment and need only the support of family, friends, work, and church.

    You will make your way through this. Start with the financial aspects now, if you can, and find a good advisor for this.

    You can wait a little bit on guardianship as long as you begin by 17 or so. Overall your son may need far less than my children needed, but it is good to think about these things and will give you peace of mind in the end.

  5. #5
    Join Date
    May 2016
    Location
    Texas
    Posts
    282

    Default Re: ASD Resources for Siblings

    Thank you! That gives me lots to work on. I’m going to order the book by Temple Grandin too!
    Catherine

    2018-19
    DS15, 9th
    DS12, 6th
    DS10, 5th
    DD10, 5th
    DS6, K
    DD3
    DS 7 mos

    Homeschooling 3 with MP
    2 using First Form series in school

  6. #6
    Join Date
    Jul 2011
    Location
    Houston, TX
    Posts
    840

    Default Re: ASD Resources for Siblings

    Adding in: how did you handle the ridiculous Selective Service registration that all boys must do at 18?
    The Homeschool Grads:
    J- 6/96
    S- 11/98

    Still Homeschooling:
    G- 4/04
    D- 5/05
    F- 7/08 (my only girl)

    Future Homeschooler:
    M- 9/16

  7. #7
    Join Date
    Mar 2012
    Posts
    2,249

    Default Re: ASD Resources for Siblings

    Quote Originally Posted by Enigma View Post
    Adding in: how did you handle the ridiculous Selective Service registration that all boys must do at 18?
    Yes, as we understand it, registration is not optional. It seems that all must register unless specific and very limiting criteria are met, such as being bedridden, institutionized, etc.

    After registration they say they would sort out registrants by disabilities and their severity, if necessary, to further exclude candidates from service. Most are not excluded from registration.

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