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Do you have a SUPPORT SYSTEM?

Do you have a SUPPORT SYSTEM?

 (This guest post is written by Angel”s Dad. Your thoughts are welcome. Thank you. MizKp)

Anyone can say I am available when you need me or I am only a phone call away or I can take care of those things for you. Honestly, does that really mean that someone is there for you?  Many parents, including those with children with special needs face the reality of an inadequate or non-existent support system.

It can be more of a challenge when there is only one parent involved. However, a single parent with a support system can get a tremendous amount done compared to a happy couple without a support system.

What do I mean by a support system?  Think about the time you had an emergency when you had to go somewhere but no one was able to watch your child. Think about the day that the daycare was closed and both parents had to work or your child had to go to the doctor’s office or therapy and you were the only person that could take him or her.

Think about the time you needed to clean up the house but you were concerned that you won’t be able to do a thorough job because you had children running around. Think about the last time you wanted to have a night on the town but couldn’t because of babysitter issues. Think about the day you were running late to do your child pick up and you did not know if you would make it on time. Think about the way it felt when you had no one to call or no one was available to help out.  Some of these things happen on a daily basis to some families, whereas others may not have to worry because there is a support system in place to help out.

Simply put, a support system is a plan of action where parents get much needed assistance with the things that can make life easier for everyone in the family. A neighbor, an aunt, an uncle, cousins, a grandparent, a godparent, and even older siblings of the child can make up the foundation of a support system. Without the blueprints to follow and the desire to help out, this support system will not exist.

As a parent of a child with special needs, I can honestly say that the support system I have is sufficient, but not at its fullest potential. I can count on my hands how many family members have disappointed me by not being around for Angel. This has made me stronger and more selective as to whom my child will be around. I thought I did something wrong  to not have a large ongoing support system but I realize that I would be better off with someone being around because they want to be there.

Let me go on and give you examples of what is NOT a support system. A support system is not a family member who chooses to be available only when it is convenient for him or her, or a dead-beat father who is never around, or an absent grandparent who lives nearby and chooses not to check on his or her grandchild but randomly provides gifts.

A support system is not a neighbor who promises to babysit and backs out of a commitment without warning. A support system is not a family member who simply live too far, so he or she can”t assist with day-to-day stuff.    A support system is not a family member who is always finger pointing and overly suggesting that things be done their way as if the parents are being lectured on parenting. A support system is not a family member who does not show up for important milestones in the child’s life, such as a birthday, graduation, or family trip. I am sure that you can think of many other examples from your daily experiences with others.

It is important for us as parents of children with special needs to realize that whether we have no one, two people, or even 20 to fall back on, it is up to us in the end. All we can do is focus on and cope with our individual situations and work with what we have.

Thanks for listening.

Angel’s Dad

Miz Kp
Written by Miz Kp

14 Comment responses

  1. Avatar
    July 25, 2012

    We are one of the married families you speak of. No support system at all. Everything you mentioned as not being a support system rings true for us, including the family that just lives to far away. My brother and sister in law are only an hour away and they never have time to help. We push through and pray we get everything done. Me time does not exist. But we’ll make it through, we have found that we are stronger than we ever knew.

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    • Avatar
      July 26, 2012

      I can totally relate to this comment: “But we’ll make it through, we have found that we are stronger than we ever knew.” In the end that is all we can do. Thanks so much for sharing your thoughts.

      Reply

    • Avatar
      July 26, 2012

      An inner strength lives within us as strong as the adrenaline rush when someone snatches your purse and you are running to beat down that punk! Yes it is an unfortunate reality, but truly you do not need anyone else. Im glad you realize the strength you have because those family and friends who are supposedly “in the circle” may end up needing you in the near future. Guess what your answer is gonna be……..ummm let me check my schedule and see if I can squeeze you in…..

      Reply

  2. Avatar
    July 26, 2012

    I understand what you’re saying. I have my immediate family who are wonderful with Nick and who I trust fully. The rest of the family who I know love my son and I want to make that clear – they do love him – they have never offered to babysit him. I think it might have to do with the fact that they don’t know if they can handle him.

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    • Avatar
      July 26, 2012

      I am not sure why some family members do not offer help. Sometimes I think it is because everyone is caught up in there own lives and it can take a lot to get immersed in someone else’s day to day stuff. Yes some may not know how to handle our children but then we can only assume unless it is stated. I guess there are no easy answers and in the end we do what we have to do.

      Reply

  3. Avatar
    July 26, 2012

    As pointed out, the objective is to provide assistance to make life easier for the family. Thus, those reaching out to help needto be aware that parents decide on the who. what, where, when and how. Helping should not make life more stressful or difficult.
    On the other hand, sometimes people don’t help because as Nicksmom puts it, they don’t think they can handle it. I do feel that parents in these cases could help make it easier for others to step forward and help by helping tham understand their potentials for helping. I know when one has so much to do it sometimes seems easier just doing it then having to train someone to help or coach them. We should try to nurture the family love (even if fertilizers are needed) by exploring new avenues of communication.

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    • Avatar
      July 26, 2012

      I agree that help should not cause stress because if it does then it defeats the overall purpose. I wonder how parents can make it easier when others make themselves scarce in some cases? At the end of the day I do not expect offers of help from certain people. If I need it I will ask. No expectations results in no disappointments. That being said, we do have help. we may not have a whole village but the help we do have is priceless and very much appreciated.

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  4. Avatar
    July 26, 2012

    Unfortunately we can tick a lot of the ‘not a support system’ boxes. The hardest bit for me is that as my son is a bit older (11) he can at times be aware of the let downs and he is emotionally very young and gets really upset for long periods. He has actually asked if his visit/sleepover didn’t happen ‘because of my autism’. What do you say? Even if I had the words to explain the actions of the people he adores to him, and who are all family, I don’t think I could speak for crying. I have repeatedly asked them not to arrange anything with him without saying to me (and only me) first so at least I can protect him from let-downs. I have offered them many means of learning more about autism to no avail. The best way would be to spend time with him surely?
    It’s hard to understand the lack of support from family living so close to us. They are blessed with good health, good careers and (that distant memory) active social lives. At the risk of sounding sorry for myself I had to give up a nursing career I loved when the stress of my child’s asd caused my mental health to deteriorate (I have bipolar disorder). My angel husband is self-employed so that he can be available to help at home on really bad days. It’s safe to say our standard of living has taken a tumble but health and happiness come first. Why though is it so easy for those that we ask for help to always ‘have other plans’ or worse, promise us a day/night then ‘something came up’. I’m at a loss…

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    • Avatar
      July 26, 2012

      How about someone saying not that I cant do it, but I wont do it? Hurtful, but temporary. Sorry you had to give up your nursing career too early. The past does not equal the future, and a bigger opportunity may be hanging around and waiting for you to snatch it up (I heard the lotto is $139 million)!!!

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    • Avatar
      July 27, 2012

      I am sorry that your family is going through this. The people closest to us tend to have the best opportunities to hurt us. Are there any social groups or special needs activities that your son can join to meet peers he can do fun activities with? Sometimes we have to look outside of family for some things. At least, I believe so. I sincerely hope that you do find support from someone or some outlet. Sounds like your husband being self employed is a blessing to your family. I totally agree that help and happiness come first. Take care.

      Reply

      • Avatar
        July 27, 2012

        All is not as dismal as it sounded, shouldn’t post late at night as it always feels worse when so tired. I have a good network of friends, all with kids on the spectrum, that I met through his autism-specific school. Great for meeting up and having a moan/laugh/rant and letting our kids play together without worrying as we all ‘get it’. But with Luke getting up at roughly 4am every morning some practical(almost respite really) help would go a long way. Guessing this is why he’s not offered sleepovers, or has the offers withdrawn but if the grandparent or aunt/uncle taking him only has to do this one morning a month say, with the rest of their child-free week-end to recover, is it really so bad?
        We are really lucky to have had access to a special needs charity that Luke has attended for over 6 years now. They run playschemes during the summer, autumn and spring holidays and he attends their after-school club 2 days per week. He will also be able to join their youth group and outreach group once he’s a wee bit older. Their staff are amazing and it is wonderful to be able to leave him in their hands and have enough trust in them to not worry while he’s there. The other big plus side is that Luke is used to this peer group and doesn’t see the wide range of disablities (some pretty severe) he just sees friends, no judgment just awareness and acceptance. He makes me a proud mummy every day!
        Now if I could just get him to accept and tolerate his younger brother…..
        ps Angel’s dad, I don’t think I can do your lotto from Scotland but nice idea :)

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  5. Avatar
    October 19, 2013

    Just came across this post. So much truth. We were painfully reminded how our support system is non-existent this week. I was having chest pains and left arm numbness, and figured those were not symptoms to be ignored. I drove myself to urgent care and then with an abnormal EKG, drove myself to the ER. My husband had to take our little one with special needs to dad’s night at her preschool, so our older daughter was dropped off at a former dance studio of hers, where she hung out in the lobby. To be at a point where you have nobody to call when you think you might be having serious heart problems and need to go to the hospital was a really depressing eye opener. My entire family lives within a 20 min drive. I grew up here. To heck with not having a night out or a break, we don’t even have someone to call to go to the hospital. Harsh reality to face. :(

    Reply

    • Avatar
      October 19, 2013

      It is a harsh reality indeed. Can make one feel isolated. There are times when I can relate.

      Reply

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