10 Things You Can Do To Help A Parent Of A Special Needs Child

10thingsSpecialNeeds

Having a child with special needs is one of the most tiring and trying job in the world.  There are lots of different types of special needs children.  There are those that may have down syndrome or autistic or something like that, there are hundreds of thousands of different diagnosis.  Then there are the children with mood disorders or mental illness,  which is what I deal with.  My kids may look like every other kid on the block, but they are far from.  They don’t have physical characteristics that make them stand out compared to their peers.   My house is always tense and my kids make me walk on egg shells.  I’m worried when I say they can’t have another cookie or it’s time to get off the Xbox.  I don’t know if they will easily say, “okay, I understand” or if it will be an all-out, drag out war.  It is normally the latter.

Living in a house with a child that suffers from mental illness is like being in an abusive relationship that you can’t get out of.  I’ve been in those types of relationships in the past and was able to gather my things and leave…but I can’t leave my child.  I can’t give up on my child.  I can’t turn my back on them.

I try to not get my friends involved in any of the drama within my house because, well, they just don’t understand.  Without being there, it’s hard to understand the level of intensity.  It’s hard to understand that giving my daughter a simple time out won’t work.  When I do open up to my friends, most don’t know what to say or say they wish they could help, but don’t know what they could do.

By no means are these going to work for everyone and I don’t want to be the voice for all parents of special needs children, but these are some ideas that *I* think would work best for me.  Here’s some ideas on things you can do for your friends that deal with a special needs child:

  1. Be there to listen.  Sometimes just lending a listening ear, (without judgement, without offering advice) to allow your friend to just vent some frustration.  Letting it out and crying to a friend can make a big difference on some of those really hard days.
  2. Offer to watch the kid(s) for a bit.  Dealing with a special needs child takes every ounce of strength when it’s day in and day out.  Offering to watch the kids while she goes to the store or just walk at the park is a great way to help her keep her sanity.  I’ve had days where I’ve been screamed at or had things thrown at me all day long.  a few minutes away can help keep me from losing my mind.  Don’t get me wrong…most days I wouldn’t accept someone’s offer to watch the kids, because I’m scared.  I’m scared someone else would have to deal with what I do on a daily basis…but knowing the offer is there makes me feel good.
  3. Avoid talking about your child’s accomplishments.  Kids with special needs may not be on the same level academically, physically or socially as their peers.  Hearing about how your child is so much better in school or a sport can just be pouring salt in the wound.  We all want the best for our kids and want them to be successful, so hearing that your child isn’t as good as someone else’s can hurt, especially when you know that they could do better if it weren’t for their disability.
  4. Check in often just to see how they are doing.  I have friends I rarely talk to, but getting a Facebook message asking how things are going can really make my day.  Knowing that she’s thinking of me and my struggles can really help give me the support I need.  A quick text or message checking in lets me know that you’ve thought about me and realize that what I’m dealing with isn’t all that easy.
  5. Stop with the optimism.  Things aren’t getting better.  They haven’t been getting better and being told over and over that everything will be okay and to be strong doesn’t do anything but make me want to cry.  When my daughter is screaming at me and hitting me out of anger, telling me to be strong isn’t help.  I have to be strong to be finding her help.  You telling me to be strong makes me feel like I’m not doing enough already…and I don’t know how much more I can do.
  6. Don’t compare your kids to mine.  Saying that your kid is being a brat and threw the biggest fit isn’t the same as what I’m going through.  Trying to relate by saying that your child’s temper tantrum is the same as fits that last for hours on end and become extremely violent does not compare.  I’m sorry you’re frustrated, but taking away toys or doing times out might work for your kid, they won’t work for mine.
  7. Talk to me about other things.  Sometimes, no matter how hard it is, I need to talk about other things.  I know you want to try and support me, but sometimes if you help me forget about it for even a few minutes, I’ll feel better.  There are other things I’m interested in and would like to focus on.
  8. Pamper me.  Okay, I’m not saying I want a night out on the town (even though that would be amazing)….but sometimes a little gesture of flowers or something would mean the world.  I had a REALLY hard week not long ago and I would have just died if I had been surprised with something like, like a flower or even a drink.  Bring me some Starbucks when you come and it could mean so much.  As I said above, having a child with this illness feels like an abusive relationship.  Sometimes a little extra care and letting me know you thought about me can mean a lot.
  9. Visit me.  Yep, that’s it.  Just come over and spend some time.  When I have visitors over, my kids don’t normally act up (as much).  Seeing my children act like *normal* kids and playing is so refreshing….plus I get some adult time.
  10. Don’t be scared to ask questions.  My friends seem timid to ask me about the disorders, medications or therapy.  I’m not afraid to talk about it and I like sharing information.  You never know if this information could help someone else down the road.  Get educated and find out what it’s really like to deal with a child like this.  I like sharing information and sometimes it makes me feel better to talk about it and realize that we have come a long way from our first doctor visits.  Some days it feels like we haven’t learned anything and made no improvements, but when I think back…we’ve learned SO much and are learning more every day.

I’m not saying this is what everyone thinks….but it works for me.  It’s what would make me feel better or what I want/need my friends to do to help me from completely losing it.

For those with experience dealing with special needs children, do you agree?  

Comments

  1. says

    #9 is a big one for me. Don’t invite me to load up all 4 of my children and come visit you, when you only have 1 or 2 neurotypical kids. Please understand that it takes 30 minutes just to get everyone ready & into the car on a good day. Then, when we try to leave your house, I’m probably going to have at least one child crying because he still wants to play with his “bestest friends” and one that may get violent when I have to physically carry him to the car. If mine get upset when you go to leave, its much easier (and safer) to deal with at home instead of in the car.

    • says

      OMG I didn’t even think about that aspect when I was writing this…but it’s SO true. I hate visiting others, having to load in the car, knowing the kids will be fighting the entire time…and not just normal sibling fighting, but getting physical with each other…..good call on that one. :)

  2. Desirae says

    I agree with about 90%. As sad as it makes me, I still do enjoy hearing about my friend’s kids accomplishments. But #5 is the one I relate to the most.

    • says

      I’m not saying I don’t like hearing about how great my friend’s kids are doing…but it’s hard when I hear over and over how accomplished they are and my child is struggling so much….with everything. Her IQ is so high, but she has so many issues that her school work doesn’t reflect it….at all. I like hearing how good my friends kids are doing…but there are some days, especially the ones that have been really hard to deal with that it just makes me want to cry because I know my kids have it in them…but they just can’t get there. :/

  3. says

    This is a great post, Amber. I think it can help a lot of people! You know I grew up with my brother that had (still has) similar issues to your daughter’s and it’s really hard to deal with from a sibling perspective much less a parent’s. You are strong, even when you don’t feel like you are, and you’re an amazing mother and person. Don’t let this get you down, you are going to be able to help SO many people that are dealing with similar things… I just feel it!

    • says

      Thank you Sadie. I hope that sharing my stories and struggles will help someone….anyone. We aren’t alone and there are too many people scared to talk about mental illness…it effects more people that we know……the more we talk about it, the more we can do help one another and find answers.

  4. says

    I agree with you 1000%. You know my situation and see my FB posts of frustration. That’s why I created the FB group Our Special Kids. A place for us to vent/listen/offer advise. I am ALWAYS here for you, Amber. Always remember that, any time/day/moment. Hugs!

  5. Betsy-Jane Lynch says

    Nice post. I don’t have kids myself yet or friends with children with special needs but I work with children and adolescents with special needs and it is always helpful to hear parents’ perspectives.
    As for number 6 – I do occasionally point out to parents that some of their challenges are not so far from typical (“well a typical kid might not have 2 hours of services after school but she might have a lot of extra homework” or “yes but any teenage boy might do that (sit in his room with music blasting and not want to come to dinner with the family)” etc… Do you think that falls under the same category?

    • says

      I think that’s a little different. I get from a lot of people….my kid was being a total brat and threw a fit because he was tired or whatever…..uumm….okay….I understand you went through a fit…but it isn’t quite the same as a child that has a mood disorder. The fits aren’t at the same intensity and while it may be a struggle for you, I don’t know if it’s anywhere near what I deal with on a daily basis. While ALL parents have days when their kids act out and get on your last nerve, it’s different when it’s all the time. My daughter has broken my husband’s nose, kicked holes in her doors, etc. That’s not a “normal” fit.

      • says

        Exactly! As a mom of 4 (1 ASD/SPD, 1 “gifted”, and 2 neurotypical), I can say there is a huge difference between their fits. One of my biggest complaints for #6 is when I’m trying to vent to a friend about spending 45 minutes restraining my son to stop him from tearing the house down & hurting his brothers (while I get bite, kicked, hair pulled, etc) and they interrupt to say something like “oh my son dumped out his entire toy box today”.

        I don’t get why some people feel the need to make a comparison. Why do they feel its necessary to downplay what I/my child went through?

        • says

          OMG I completely understand. When I am covering my legs that are covered in bruises from restraining my daughter for hours on end, it isn’t the same as your child writing on the walls or whatever else.

  6. says

    Great points!! I think the ‘don’t compare your kids to mine’ is a great one, my niece is special needs and this one bothers me a lot. Yet, same goes for any kids, I cringe when other parents do the comparison game.

  7. says

    WOW, your tips blew me away because I think as a parent or even person that doesn’t have firsthand experience, I wouldn’t have thought about talking about my children’s achievements. I’m also always afraid to ask questions because I don’t want to offend them. Thank you for sharing.

    • says

      I can’t speak for everyone, but I honestly don’t mind talking about what the issues are and what steps we’re taking…I don’t like when I’m talking and get interrupted with info on a book they saw online or how “their friend had a kid the same way and after they quit eating gluten he was better”. That is when I just want to scream….but I like being able to talk about it.

  8. says

    I so agree with not talking so much about your child’s accomplishments. It is SO hard to see your child struggling in school when everyone you know is all like “ooh Suzy got straight As and Johnny is the captain of the football team” I am happy for them but some days it’s overwhelming.

  9. says

    I know someone at church that has a special needs child. While we’re not really close, we do know each other and make small talk sometimes. I have in the past tried to imagine how it is for her at home but I know I’ll never really understand. Your post somehow gave me a peek into her struggles and experiences. I’m exactly as you said– I don’t know what to say to her with regards to her situation. I’ll make sure to remember these tips next time I see her because I’d like to make her feel better even for just a couple of minutes..

    • says

      I’ve had so many friends that say they just don’t know what to say to me…or about our entire situation. I don’t want my child looked at any differently, but they are different. My struggles aren’t the same as everyone else and our family is very unique. I hope these tips help many understand that it’s okay to ask questions and you don’t have to tip toe around someone you know is struggling with a special needs child….just being nice and showing you are there if they do need anything (which they probably won’t ever take you up on, the the thought is there) means so much.

  10. says

    This isn’t something I’m currently dealing with. However, my mom did with a sibling of mine. Sometimes I’m not sure how she did it. I think your advice is fantastic. Especially #5. That must just boil your blood. All I want to say is how I admire you for speaking out about this. Making the world know what you need. You deserve that. And I don’t know you but I’ll send you a virtual hug anyways. Thanks for this post. I can think of about half a dozen people who I need to share this with.

  11. ascendingbutterfly says

    I am a former Special Education teacher and often times would end up being a sounding board for the parents, it was helpful for them when they realized I understood exactly what they go through, and in my case multiply the number by anywhere from up to 30 or 40! It’s not easy raising a Special Needs child that’s for sure!

  12. says

    You have great suggestions. I have adopted three kids all with some issues. My kids tend to run over just about anybody that watches them. I just wish people are not so scared to ask what they can do and then follow through.

  13. Nickhole says

    I love this post. I am currently getting my son evaluated for autism. He’s shown signs for year and finally someone listened to me. I think I need to send this to all my family and friends so they can start to understand. With him there is usually a meltdown when he is told no. And it gets very exhausting.

  14. Toni Cosgrove says

    I was sooo awed by our honesty..these things will be so helpful to those of us who have no clue but want to be supportive…I remember having days as a reg parent and craving a conversation that the word :mommy; was not uttered.

  15. krystyl olson says

    very well written and I’ll keep it in mind -I have my special needs educator diploma and am proud that I may be able to provide resources and respite to parents … it makes my day worth it.

  16. Rebecca Parsons says

    I can relate and so needed to hear this.. I have a daughter who did nothing but defy me since she was 2 years old. Not a typical temper tantrum but an all out on a war path look out anything that wasn’t tied down. Instead of my parents helping by lending a ear they said you need to discipline her more. My siblings would say my kid this and my kids that then in the next breath say is she still acting like that…. Talk about angry… I love my family but they had no clue. Seriously come walk in my shoes for a day and ask me how that me disciplining her works. I needed friends but everyone abandoned me or told me she will grow out of it. I’m not saying poor me but I am saying that it would have been nice to have a hand, a ear or a shoulder to cry on once in a while. Hopefully this opens up people eyes to what they can do to be proactive.. I honestly believe in the phrase “It takes a village”. I honestly thought I was going to be the one who was going to be taken away by the men in white coats. I am saying this because she is now an adult. She is now doing way better with therapy and me doing therapy too. She is expecting her first child and I can promise you if she deals with this I will be there for her to get through it.

    • says

      Thank you for sharing that. My 10 year old is currently hospitalized for the violent outbursts. It is something that no one can understand unless they’ve dealt with a child like this. It is so frustrating.

      • Rebecca Parsons says

        You are right know one knows unless they have walked in your shoes. I am hoping you find that peace that you need because it is a long road but a road worth traveling. I am sorry to hear she is in the hospital for this but it sounds like that is what is best for her. Every child that has this issue is different and they are special. I know you don’t like hearing this but you are strong and you will prevail! I say you are strong because trust me I didn’t realize how strong I was until she was much older. If you are holding it together the best you can without loosing your mind totally, then that is my definition of strong!

        • says

          Thank you. I feel much stronger now than I have in the past. I think I’ve finally accepted the fact that I can’t help her like she needs and the hospital is where she will get what she needs. Last time she was there I was a complete mess and crying non-stop, didn’t eat and was miserable…this time I’m just living life like it should be. I try not to think about it so I don’t get sad. Hopefully Monday she’ll be coming home and hopefully things will be better than they were.

  17. Karen Beck says

    Good suggestions! I am the mom of a 13 yr boy with moderate -to-severe autism. He has his good days and bad days, and it change on a dime depending on his mood. My family seems to understand, but don’t really ever offer to help and ignore him at most family get-togethers. I know if I really needed help they would be there, but it shouldn’t have take a crisis to make them care more. ?? My husband and I just do our best to hang in there.

  18. christine mondy says

    Thanks for this post. I have a friend that has a child with down syndrome and I feel awkward at times. I never know what to say or not to say. And now that I have a healthy newborn, it’s been even more weird. I’m going to take some of these tips to heart though. Thanks again.

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