How YOU could help a Special Needs Parent

As the rates of #Autism continues to skyrocket, the likely hood of you knowing someone that is a special needs parent is growing as well. Maybe you already know someone with a special needs child. Perhaps, a friend or family member.In this article, I hope to give you some simple ways that you can help the special needs parent in your life. Knowing what to say or do can be daunting for someone that doesn’t have experience with special needs parenting. This is probably where many people, with the best of intentions, get scared off. Seeing what a special needs parent goes through can be a very overwhelming experience for anyone.

It may even seem so dire that one might feel that they have nothing to offer, that could possible be of any benefit. I hope to change that by sharing a few very simple, very basic ideas, that can provide much needed relief to a special needs parent and let them know that they aren’t alone.

So, you have a friend or loved one that is a special needs parent. Do you want to offer help or support but don’t know what you could possibly do? First of all, let me thank you for showing compassion, concern and love for the special needs parent in your life. Honestly, to a special needs parent, just knowing that someone cares is really important. In fact, it’s so important, that I don’t think it can be overstated.

The first thing you should know is that typically, the special needs parent will never ask for help. Often times, they know how overwhelming theirs life and struggles can be and they don’t want to burden anyone. If they do ask you for help then it’s truly needed. One of the things the special needs parent does very well, aside from raising amazing but challenging children, is suffer in silence. They have become so dedicated to their child that they often times lose themselves in the process but rarely if ever complain about it. The special needs parent typically struggle with exhaustion, finances, time and just about everything else. 



If you have ever wanted to offer help to a special needs parent but maybe don’t know how, this article is for you. Perhaps their situation is so difficult, you don’t know how you could possibly help. There are some things you can do to help even if they don’t seem like much.

One of the toughest parts of being a special needs parent is the feeling of isolation.  Their child requires so much of their time, energy and undivided attention that they often times have little or no adult contact (aside from doctors and therapists). You could make plans to stop by for a visit. Many special needs parents will tell you that they would love to just talk to another adult. Please remember to call first as a surprise visit could just add to the stress by destabilizing or overstimulating their child.

Sometimes, by the end of the day, exhaustion is such that the thought of making dinner is simply to much. Perhaps you could also offer to bring dinner over so they have one less thing to worry about. It would be a very nice gesture and could really help take some of the load off their shoulders.Remember that their child may have special dietary or sensory needs so it would be a good idea to do some research by calling and asking what would be a good meal to prepare for them.

Things as simple as sending a card, email or text message, just to let them know you’re thinking about them could help them to find the strength to keep moving on a really bad day.

If you wanted, you could send them a gift card for groceries or maybe their favorite take-out. There is often times a tremendous financial burden associated with special needs parenting and maybe a gift card will help them provide groceries for their family, if things are tight that week.

Think about making arrangements to go over and spend some time with their child (if that’s something that would work). Educating yourself about Autism of whatever else the parent is dealing with is important for something like this. Not only will educating yourself help you relate to their child, but knowing that you took the time to learn about their child’s condition would mean a great deal to any special needs parent.

As their child likely requires all their time and energy, every single day, things around the house and yard tend to take a back burner. You could help with lawn care or repairs to the house. Wash a sink load of dishes or fold the laundry.

The list of possibilities is endless really.

The most critical thing you will be doing, is showing them that they are not alone. Sometimes just knowing that their are people who love and support you, standing in your corner, can mean more then you can possibly imagine.

Please remember that you don’t have to understand anything about Autism in order to show love, compassion and support to those touched by it.

 

 

Take a second and answer today’s Autism Parenting poll

As an Autism parent, do you get frustrated with unsolicited advice?

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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)

  


  • Anonymous says:

    I live a 3 hour round trip from a relative raising an A child. I have offered many times to get together, have had them on overnight visits, but get turned down for everything I offer. We blundered on our first visit in reacting to violence against our children and the child’s sibling. We were not prepared at all, and after subsequent discussions with one parent (my relative) we had another over night visit that was described as incredible, amazing, more therapy in 2 days than in 6 months etc. yet I have been rejected for every subsequent attempt to get together. I have been told they will never be coming again. I assume it’s the other parent who knows this condition is an awareness issue for the rest of us, yet won’t accept that without any preparation we humans are going to make mistakes.

    So to the parents of A children, if you want to get help, have connections with family etc, I recommend you give a smidgin of understanding to those who do not yet understand ( as you likely did not until you were forced to learn) but are willing to try. If you claim your situation is challenging (and I now know after self education that it can be off the chart challenging) and no one understands, than accept that for everyone involved. Otherwise you will end up holding into one episode that typifies these interactions, hang on to whatever grudge you may have, and deny your special needs child if likely the only meaningful connection he or she may ever have.

    Just one person’s opinion.

    • While that’s a bit cryptic and I’m not sure I followed and completely understood, you do make a really good point.

      I can’t say that this is typical because I don’t know. However, it’s certainly a likely scenario and you offer pretty concise advice. Thank you for being willing to try. I have a great deal of respect for you. 🙂

  • toomuchuselessinfo says:

    Thank you-I wish more people would help than criticize. I honestly believe that a higher power than me is helping me and my husband raise our autistic boys. Because we’ve gotten minimal support from most people.

  • Mark N Kathleen Visscher says:

    Sharing!!!

  • Christa Janotha Smith says:

    You wrote a wonderful article! Many good ideas. Well done!

  • swalker409 says:

    Well said! You are right, I never ask for help, yet it would really make my day if someone would at least offer.

  • adventuresinmattyland says:

    I LOVE this post in a big, bad way. We are the parents of a 2 year old with Epilepsy, CP, Cortical Visual Impairment, Hearing Impairment, Non-Verbal and a whole host of other issues. We did know in advance of any of his health issues and were suddenly thrown into Special Needs World when he was five weeks old. In the subsequent weeks, months and years we have lost friends, had family members disappear, and were fed shovelfuls of platitudes about raising a child with special needs by those who did stick by us, all the while getting very little to no actual help other than our parents. I got sucked into a big dark void mixed with a hearty dose of postpartum depression. Other new parents treated us like Matt’s issues were contagious and that by associating with us their kid was going to end up like him.
     
    The best advice I can give to those who know a special needs family is just talk to them and really listen to them. If you are close to the family and feel comfortable enough to care for kid’s medical issues, offer to babysit so that the parents can grab some time to decompress. Call them to talk–and not just about the kid’s issues.  If you see a special needs family on the street, don’t gawk or stare at them. A simple smile will go a lot further than you may think 🙂

  • HeatherWamplerBryant says:

    Another great post!

  • L NY says:

    Additional Info: Apologies for Typos, spell check, etc. I could swear I triple checked before posting 😉 Also, I feel much better already, being able to express feelings in a safe no judgement place feels so good. Thank you, Thank you, for this blog!

  • L NY says:

    Hello to All,
    This is my first time visiting your site. I found it as I was searching for other people who could be going through the same as I am, isolated from immediate family and other relatives, while raising a child with autism. I wanted to know how others work through these issues as I think I have lost the emans to cope with it. How to not let the feelings bring you down, I would love to know.
    What i found after reading your blog was great relief. You have no idea how much i would love for my family to understand the challenges and differences of raising a child with autism. More importantly how isolated I feel day after day and how much it hurts to know that 2 sisters and husbands, 1 brother, his wife and kid, 1 niece, husband and kid live just 15 minutes away from where we live but have never ever stopped by my house. The excuses were always so many, I stopped trying. Instead, I visited them. It didn’t really work as easy as I would have wanted for it to be.
    They have no problem making the drive for shopping purposes, as I live in an area with plenty of shopping malls and ammenities, but apparently it never occurs to them it would be nice to stop by or call to ask if I may need something or tonspend sometime with me and/or my daughter.
    My daughter is 9 years old, I am a single parent.
    I apologize for letting the emotions show while I am typing, today is just one of those days where I feel more fed up with this situation than it has ever been.

    • lostandtired says:

      @L NY you never need to apologize here. You are experiencing something that is truly unfortunate. In my opinion, letting your emotions come to the surface takes a great deal of courage and I admire that.
      May I suggest you join our forums and share whatever you feel you need to. There are so many of us going through the same thing. You aren’t alone.
      You can find the forums above or by going to http://www.lostandtired.com/autismhelp

  • theblondeview says:

    But why, oh why…don't those who are family, live near by, are obviously related to us…even ever think to help? Making more stress, that we do get from them!

  • Julie Wolfe says:

    I love reading this stuff! Having a daughter who's suffered 3 Strokes between 4 and 6 months old, even though all of our situations are different, we all have the same underlying feelings!

  • Stephanie M. says:

    I am a mom of a hubby diagnosed with PDD-NOS, followed by two sons with the same, and our youngest son with severe Autism. Last week, our only daughter age 16 was also diagnosed with PDD-NOS. You're notta kiddin! I am so LOST and TIRED!! 🙂 Love your article and we are sharing it with family and friends and our church members. Thank you for your insight.

  • Angela C. says:

    Just a friendly word at an event such as a parade will help. I know my kid is acting strange, but talking to me and him kindly is a wonderful part of a day.

  • Just me says:

    I was 17 years old when I gave birth to a boy with multiple physical and mental disabilities. His father left us immediately and I started the process of hospitals, specialists, working and going to college, and trying to be a single parent. I have read many posts on here, including the author of the blog, where so many of you chose to continue having children and many of you now have multiple disabled children. I honestly would like to know why you chose to continue having children if you knew the odds were that you would have another child with disabilities? It seems selfish to risk having more children with serious health issues, and having a healthy child seemed that it would take away time from my disabled child. I am looking for honest answers please – not lip service about how all children are special or "let God decide". I truly want to know please.

    • Andie Herman says:

      Dear Just Me,
      Thank you for your honesty. Ok, so I can speak to your question about having other kids post special needs kiddo. It was COMPLETELY SELFISH! Although, for the most part having a baby is a selfish activity anyway. But you asked, so I am pondering why did i have 3 additional kids? I wanted to experience what other have, a baby that doesn't have to go to doctors, have invasive testing, the horror of medical procedures, endless IEP, etc. And Yes, my healthy children have suffered greatly but they do love their brother. Perhaps, you are catching me at a week moment

  • joy says:

    All of the children have special needs of some sort. That autistic child was born for a purpose ………anytime you get frustrated or overwhelmed say a prayer or hug your child. Look back and reflect on the good times. Its not easy but its worth it when you see that child smile and say I love you.

  • Blue Sky says:

    This is such good advice … off to share xx

  • Peggy says:

    This is a wonderful post. Thank you Rob. It is hard to ask for help, to even know what to ask for sometimes. If it weren't for the ABA therapists in my home most days I could go days without really talking to and interacting with another human being. That's just not healthy. I also have 3 sons on the spectrum and for the most part they are all nonverbal. They are wonderful but sometimes you just need to know someone cares and be able to talk to someone that will talk back.

  • Right on! I wrote about this same topic back in November. http://dswalkerauthor.com/2011/11/07/your-child-h

    As special needs parents, we can feel so isolated. It's so good for our friends — and we are blessed with wonderful friends who genuinely want to help — to hear what you have to say.

    Blessings to you and your family
    Bobbi Sheahan

  • valeriejones says:

    Nice

  • carl says:

    I am a stay at home father of five kids, of which 3 have special needs. I have been searching for an organization that offers advice and education to stay at home fathers. There isn't really anything out there that I can find. So, in my "free" time, I am going to start one. I blog and have a group on facebook that I use to communicate with other parents. There is a group of parents out there that is struggling with being heard. And that is the stay at home father. Blessings to you and your family. When I get the website up and running, I will send you a link.
    My recent post it's been a while…

    • Lost_and_Tired says:

      Great idea Carl. There aren\’t slot of resources available. I try to provide something similar as best I can. Awesome idea.

  • Kristina says:

    Hi Rob. Love your blog. I'm a SAHM to three children, including a non-verbal boy with severe autism and a girl with ADHD and Oppositional Defiant Disorder (ODD). Life is challenging on the best of days, but reading your story makes me feel not quite so alone. Hang in there! I know you will, and I will too, because there is really no other choice — our children need us.

  • Anita Howell says:

    Excellent post! It made me feel like my feelings are normal for an abnormal situation. Thank you so much for sharing!
    Anita

    My recent post Twix? No Thanks – I'm Praying with Honesty

    • Lost_and_Tired says:

      It\’s normal to feel whatever you feel. We aren\’t living in typical situations. Thank you very much… 😉

  • Sherie says:

    I had been a single Mom of an ASD boy for mostly 7yrs before having my daughter two years ago, as a single mom. Thankfully she's two now and not on the spectrum (that we can tell!), because I can only imagine the challenges I would have faced, even though I know we would have persevered. Boy and I, we're strong, grin. I remind him that every day (low-tone, and easily frustrated).

    It was very tough with a new baby on the way and knowing I needed more support than I could provide by myself after she came. So I found myself living with my grandmother just so we could survive on the piddling income I could make while still devoting enough time and attention to my son for him to keep progressing well enough to keep up with his classmates.

    But by keeping up, I mean just barely. His academics in everything but recess were hovering just above actionable status by the school, but only because of the six hours I would put in most every night just to keep him treading water. Reading/storytelling and recess were the only two things he cared about .AT.ALL.

    They were just getting ready to start multiplication and serious Language Arts stuff – parts of speech, specific types and styles of writing, you know, all the technical parts of communication. Can you imagine how fast his eyes glazed over and he went away to his Dinosaur Place? One of the Big Two obsessions for him, the other being all the other living creatures he can learn about, grin. Handwriting was a struggle too, the ability to even hold a pencil correctly would come and go. People struggled to understand when I would tell them how he would lose abilities and/or skills that he had previously seemed to get…

    Math and spelling? He just didn't care about. He loved to create stories, but couldn't be buggered with the spelling, or working on improving his handwriting. Even knowing that *he* couldn't re-read what he wrote wasn't a good enough catalyst for him, he would just make up new words to go along with whatever he drew. He saw no point, didn't want to, and that was pretty much the end of that. Anyone trying to get a seriously balking ASD kiddo to do something they don't want to do can probably help me write that book, grin.

    Because of his slower development in a few areas, like attention span, coherent communication with anyone not knowing his "language", and social skills – plus the bullying he was receiving just because of who he is – in February I decided to pull him out of public school and devote all my free time to his education, since I already was anyway. Seems that six years in the school system only taught him one basic lesson: Wait twenty minutes and whatever you don't like will go away, grin. But that meant that homework – and I mean LOADS of it – would come home from his entire school day's worth of classtime activities, since he didn't do it during class, or stay present enough to absorb anything the teacher said. Worksheets covered with doodling, and a really intensely rich imagination were all that got worked on while in public, sigh. He is amazingly gifted where it comes to reading though, but even that can't be attributed to school. He started the past school year well ahead of his peers after learning how to read over summer break, and all because of his own desire to decode these little squiggly lines and figure out Teh Sekritz of the written word, grin.

    Losing my job shortly after that didn't help *my* piece of mind, but luckily we live in public housing so my rent adjusted and we have been able to scrape by. It was actually a really good thing – more time and attention to help Kiddo get the hang of staying more present in *this* world. Also, a year ago I met a man online that had experience with kiddos on the spectrum, and we started dating. I am now lucky enough to have a partner helping to shoulder the load, yay! We've come so far since February that it's almost a totally different boy in the house now. He's much more relaxed, can follow a multi-step set of directions pretty well on most days, is regularly keeping up with a small list of chores, and his eye contact alone has improved by leaps and bounds. We haven't even touched Math this whole summer, but then again he is still struggling with fundamental concepts like before, behind, around, front, back, etc. How in holy blank-edy-blank was he expected to be able to grasp number manipulation if he was still not even understanding the linear nature of numbers??? Don't even get me started on time! *sigh*

    Ok, sorry… had to have a little mini-rant there. Better now, I think, grin. People that have done for me the very things you just suggested in this post are about the only things that kept me going sometimes. I'm so very glad there are people like *you* out here to keep me from feeling nearly so alone in all this. I definitely shared the link, because I know a goodly percentage on my friends' list either are a special needs parent or know one. Keep on being awesome, and give an extra snuggle to any who will take it tonight!

  • Vivien Field says:

    I found your site after a group conversation amongst Moms of Special Needs Kids and how our husbands cope or what breaks our marriages, and someone posted this link up. The photo above is my husband to a T, I know its hard no matter which parent you are. So I just wanted you to know that others in your situation (though obviously not the same) appreciate what you say and send you strength and understanding and wish we could be there to help! Its tough doing it alone, and as you say, we do it in silence, I always assume people will want nothing to do with my son and would be afraid to look after him, because often thats the case. HUGS FROM AFAR – You do a great job!

  • Mike Field says:

    Cute photo! I am often found snuggled up in my boy's bed if he is having a really tough night.or is sick… because of his issues at 4 years he is unable to get out of bed or ask for help if he needs it.

    He also makes a good hot water bottle…

  • JoAnn Leth says:

    I have 3 beautiful children, the youngest being Downs Syndrome.Of course I wonder what are lives would have been like if my baby could have been ( Normal , should I say). And what is Normal I say?? Are family has had many, many, trials & tribulations, but would not trade one miniute of it!! My baby will be 40 yrs. old come Feb., & I thank God everyday for giving me this child,making me STRONG, and being with me to take care of him. And I just need you to know, I despise the word ( retard) !!!!!!!!!!!!!

    • Lost_and_Tired says:

      Wow. You are truly AMAZING. You have been doing this for such a long time. This is beyond inspirational. There are many times that I have a tough time believing that there will be a future. You have just given me hope. Thank you so much for that.

      +1000 on despising the word retard.

    • joy says:

      Down syndrome children are smarter than normal ones and very special. God gave them the gift to love unconditionally without fear. Most people will never know that gift…Bless that child…..

  • cindi says:

    great post! We are the parents of 3, 2 of which have pretty big medical needs, especially our youngest one. Your post is so very true of the lifestyle we lead! Prayers for your family!!!!!!

  • Loren Marvin says:

    Rob,

    Great post man. I have people ask me all the time what they can do for their friends giving care for special needs kids. You nailed the most practical ones for sure.

    Some wonderfully loving caregiver parents and I have started a non profit organization in Houston called Desperate for Respite, to give parents and caregivers 4 hours of respite from the grind of isolation. You can check us out at http://www.desperateforrespite.com.

    Thanks for all you do!!

    • Lost_and_Tired says:

      Loren,

      What an amazing thing you are doing. Thanks for your support and for your support of other special needs parents. I'm going to check out your site and then tweet it out later. Thanks again.

  • Rhonda says:

    Thank you for posting this Rob. Very well said and it's especially meaningful to hear it coming from a special needs dad. I'm the mother of two sons with special needs and facilitate self-renewal groups for special needs moms. Blessings to you and your special family.
    My recent post

  • Stephanie P says:

    Beautifully written and such an important message! I just found your blog yesterday through the Babble.com Award. You definitely deserve it! Keep up the wonderful work you are doing here and blessings to you and your family.