Gillian Marchenko

March Home Staging, Jooniper Design, Author & Speaker

10 special needs of special needs parents

10 special needs of special needs parents

As a mother to two little girls who have Down syndrome, I need parents of typically developing kids to know something. I have needs. And yes, they may be a bit special because I have “children with special needs.” Parental support from others in this crazy business of raising kids is essential in a mother or father’s life. So it can be painful when support falls flat, or if it doesn’t show up at all. How do you act around your friends who have children with special needs, or around the woman at school you see at pick-up, or the dad standing behind you in line at the grocery store?

10 special needs of special needs parents:

  • We need you to bring it up. Ask us our stories. It’s OK to ask questions. Most parents of children with special needs would prefer that others ask them about their child directly, rather than avoiding the topic. A smile or friendly “Hello!” is an easy icebreaker.
  • We need our kids to have friends. We want you to invite our kids over for play dates. If your child wants to have a play date with my kid or invite him or her to a birthday party, encourage it. Call the other parent and simply say, “How can we make this work?”
  • We need you to share your concerns. If you are concerned about something regarding my child, by all means, tell me about it. I may not have an answer for you, but I sure will appreciate a conversation about my kid. But we don’t always need your advice. Feel free to talk to us about a new therapy or diet you’ve heard about. Just be aware that we’ve probably already heard of it/tried it.
  • We need you to make an effort. Effort goes a long way. Educate yourself about my child’s special need. For instance, learning simple signs so that you can better communicate with a child who is deaf (and uses sign language) would be appreciated.
  • We need you to prepare your kids to hang out with our kids. If you know you will be spending time with my child who has a disability, talk to your child about it beforehand. Talk about behaviors, and ways your child can play with my child. Need ideas? Ask!
  • We need you to be considerate. Consider the age of the child with special needs. If it is a new baby or a younger kid, I may not be ready to talk about this parenting path I have found myself on. But that doesn’t mean I won’t ever want to talk about it. Follow my lead. I’ll let you know.
  • We need your tangible help. Offer to bring over a meal, or help at a doctor’s visit. I’d love it if you hung out with my kids with special needs one afternoon so that I could take my other kids to a matinee.
  • We need you to treat us like other friends, too. Talk about other things with me besides my child with special needs. Believe it or not, I may just want to gossip about Angelina and Brad and their globe trotting kids.
  • We need validation. Don’t dismiss my concerns by saying “oh, my typical child does that”, or my favorite “well, then my kid must have a disability too, because he/she does XYZ also”. When I open up about a struggle, I want validation, not to be blown off.
  • We need invitations. Don’t assume I’m too busy. Ask me out to eat or to a movie. I may not be able to get away as easily as other friends who don’t have kids with special needs, but I’ll go if I can, and if I can’t, your invitation will make my day. And ask me again!

OK parents to children with special needs, what do you think? Anything new here? Do you agree/disagree? What did I forget?

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115 comments found

  2. great thoughts…totally agree… also.. that they offer something we need vs. something a typical parent may think we need…. and so agree with “oh, all kids do that” ….have 2 sons with autism… drives me crazy when people say, “oh, all kids do that”… like I am a drama queen… sometimes those are the only things you can share, because they understand the situation… somethings are hard to explain because others have no basis for understanding…

    Reply

    1. Yes, it can be hard. On one hand you are thankful they are trying to help, but often times the situation is so complex, typical solutions just won’t cut it.

      Hang in there, mama!

      Reply

      1. This is a pet peeve of mine, too, for people to say, “I know what you mean,” or “We dealt with that, too.” But then, the other day, a friend was telling me about her child with special needs (not Down syndrome, like my son), and I found myself saying the same things! I was trying to help her feel understood, and that she wasn’t alone in the struggle, but I know that it just belittled her struggle. Couldn’t believe I did that!

        Reply

    2. As a special needs teacher of hundreds of downs children through the years I sympathize and hear you loud and clear. What I do want to say in addition to your comments that people fear the unknown. They don’t know how to approach a topic of this nature. What they don’t know is the cognitive rate of development is much slower for these children. They may be chronologically 8 years old but mentally functioning at the level of a 2-5 year old. Their needs are still the same for their level of ability as any child of that age level. They are first and foremost still children. This is why I believe for some children that segregated facilities to address the needs you mentioned is a good thing. Full inclusion is not always the way to go. Our students were able to participate in sports, socialize with peers their own age, have dances together, celebrate homecoming, play simple instruments in music therapy, attend their own prom, have swimming therapy, be cheerleaders and become involved in after school special oympics activities. The one thing I loved about a facility of this nature was the emotional well-being of our students was addressed. Everyone has a need to be liked and companionship. Their academic and social growth and development were each addressed. I always had a ball working with this population of students, watching their growth and developing into productive young adults. It did my heart good to know I had a part in their programming.It is human nature for kids to migrate to peers they want to socialize and feel comfortable with. People they can share their innermost thoughts with. The gap continually to widens with special needs students and general education students. This is a hard reality for parents of special needs kids to accept and live with. There are respite facilities for parents (which I highly recommend that parents take advantage of so you can spend more time with the other members of your family, or just to take time for yourself. You need it and deserve it.) and group homes and other options for these students to access as young adults. Take care of yourself and God Bless.

      Reply

      2. I appreciate your perspective as a teacher, but have to take issue with your comment that an 8 year old with the cognitive ability of a 2-5 year old is the same on every other level as a 2-5 year old. Regardless of their cognitive ability, kids are interested in the kinds of things their peers are interested in (dating, Twilight not Barney, Harry Potter not Spot Dick and Jane, etc), not what kids much younger than them are interested in. As the proud parent of a child who was completely included in school K-12, I can tell you that my son did all of the things you seem to say kids can only do in a segregated setting, including sports, prom, therapy, a real job at a competitive rate, and the rest. Was it harder for the teachers and us? Sure, but it is so worth it every time I hear adults amazed at how much more my son does and more importantly, how much more he fits in, than the other kids with similar disabilities that they’ve encountered. People often dismiss his inclusion by saying he was able to handle being included because he is special (meaning has more abilities). I tell them no, he is special BECAUSE he was included. That does not mean he doesn’t have friends on his intellectual level- he does plenty of extracurricular things with friends with disabilities. And you’re right, inclusion is not for everyone- many parents (and school systems) do not have the energy or (in the case of parents) capacity to do all the work it takes to make it work, and its a great thing that there are programs out there like yours for those parents and kids who need and want that, but just as with race, gender, or any other kind of segregation, it should be the exception, rather than the default. My child is going to live in the real world, and having him live in it from a young age has equipped him AND his typical classmates for it much better than his peers who have rarely been in it. His classmates’ parents would I think agree, that it has made them better people who are more equipped for a world that includes everyone, as well.

        As to the article itself, you’re right that those are all things that would be good if they are offered, but the parents of typical kids are less likely to read an article like this and more likely (if they do read it) to think geez, I don’t know if I want to put all the extra effort into a friendship like this. But if they are already your friend, while they may not volunteer these things, they are going to listen when you ask them for some of these things or volunteer some of this information directly. Telling our friends things like this is just 1 example of the extra effort required of being the parent of an exceptional child. There’s alot about being the parent of a child that’s more than typical that’s not fair and is frankly exhausting. But there are some amazing benefits that come with it. The lows may be lower, but the highs are so much higher. Like when your child is 1 of only 2 that gets a standing ovation from the entire school on awards day. Keeping those moments in mind can help in the tough times.
        Sorry this is so long, but thanks for letting me say it. 🙂

        Reply

        2. I have to say I completely agree with you Amy. I have a child, who has autism. We moved from OH, where he was completely included in classroom, to FL, where they decided not to follow his IEP, and put him in a self-contained classroom with 8 other students. My son fell apart. He is 8, and was functioning at near kindergarten level in Ohio. In FL, he regressed to a 2-3 year old level. He went from being able to read “Dick and Jane books” to not being able to read at all. He went from having no behavioral issues to being called annoying, violent, and un-educatable by his ESE teacher. Because he went from being non-violent to having self-injurous behaviors, I had to pull him from his classroom and place him in a special school for children with autism. We are finally breaking him of the “behaviors.” He will return to a public school in another year, and we are facing the school district fighting us on inclusion again. Another military dad (my husband is in the military), who is fighting the same legal issues we are with inclusion, said it perfectly, “there are no special Walmarts, there are no special gas stations, and there are no special malls, streets, houses, etc…, why are there segregated special needs classrooms?” I can’t teach my child to read, write, and be successful, if he is already predestined for failure. Especially, since he is capable of much more than that particular special needs teacher (above) gives him credit for.

          And FWIW, as a parent of a special needs child, it’s not “downs children”, the children have Down’s Syndrome. They are not defined by their disability. My son has autism, he is not my autistic son.

          Reply

          1. Yes, please use “personfirst” terminology such as a baby with Down syndrome rather than “a Down’sbaby”. They are children first.

        3. I might disagree with you on interest level. My son is 11. He is not interested in any way in what his peers like on TV. So that is a generalization that really can’t be made. As much as I would like him and I expose him to age appropriate shows, he prefers Elmo – a preschool level show. It is what it is.

          Reply

        4. Amy, I completely agree with your post. Research from Down Syndrome Education shows that children with Ds who are educated alongside typical peers achieve 4-6 grade levels higher performance by high school graduation than those in segregated classrooms. Inclusion is the only option for my daughter who is 4. We had to insist and educate our IEP team regarding inclusion and it is probably going to be a battle every year. I believe that special education teachers feel that, by choosing inclusion, we are dismissing their value. Special education teachers are needed to partner with the general education teachers and coordinate the delivery of special education services to our children (modifying lesson plans, incorporating visual schedules, etc.). “Special education” is meant to refer to services- not a setting.
          We have experienced the segregated classroom, where our then 3-year-old regressed, versus a regular preschool classroom. Children, even at that young age, recognize a group of children who act differently and are in a different room as being different. Segregated classrooms encourage discrimination and social intolerance. Parents who fight for inclusion are not in denial of our children’s extra needs- we just believe they are worth that extra effort from teachers, support staff, and their peers.

          Reply

      3. Also responding as an inclusion teacher of typical and special needs kids….I find much social success for my students when the differences are explained
        It can be addressed in many ways, by the teacher, the parents, or the child depending on the difference. Kids need to know that they can be friends with everyone that they choose they just need to be flexible! What better life skill to teach in school than flexibility.

        Reply

        1. I totally agree with this! I went into my daughter Polly’s kindergarten class last year and read a book about Down syndrome and talked to the kids about what it is, what it means, etc… The kids had great questions and it really set an open, accepting tone for the year. I should post what I used and the take home. Thanks for your comment!

          Reply
  4. Pingback: 10 needs of mothers of children with special needs | Waving a White Flag

  5. Perfect…. I wouldn’t have said it any better… Oh another one would read somethiing like…I am not some kind of a saint for having kids with special needs… I am a mom JUST like you!!!

    Reply

      1. Oh Brigitte, You hit the “nail on the head”. I hear “you must be a saint, an angel etc” all the time. Or “Better you than me. I could never do what you do”. Our children are all adopted and special needs. We will be bringing home #7 in the fall from Asia. He has Downs.
        I am just like everyone else. I don’t have the patience of any saint. Nor am I perfect or even pretend to be.
        But as note at the beginning, our family sure could use alot more support then what we get from family, friends and our church. Sometimes we feel like we live on an island by ourselves. People just aren’t quite sure what to think of us and our kiddos.
        Thank you for your wonderful Top 10 needs of us “Special” parents. Am definitely sharing with everyone I can get this to 🙂

        Reply

    2. Hi Brigitte,
      I agree with you 100% I am not some kind of saint. I am a mom Just like you with a
      beautiful, smart, and handsome son that had Down Syndrome. I would also like to
      connect with other parents that have Down Syndrome children. I tried to extend myself to others but it seems like I always have to make the first move or else I don’t
      hear from anyone. That is very sad to me.

      Reply

  6. I think you’re spot on with all of this Gillian! And yes, I prep Kristopher (8, typical) when we are getting together with other families that have kids with special needs. I tell him how old they are, and what things he might do with them. If they don’t talk, I let him know things he can say or tell them about. I they sign, I let him know and he will sign with them. If they are more like a baby even though they might be older, I let him know if they like to be tickled or have their arm rubbed. Knowing what to expect helps him to enjoy our visits as much as I do. My other littles with special needs don’t need prompting… Nor does Lynae (2 1/2), because they are still young enough to just take people at face value and interact no matter what 🙂

    Reply

  11. I have a special needs grand daughter that is the all and everything in my life God blessed this family with my little angel and she has changed my life for the better.I try to step in and relieve her mother (my daughter) as much as possible,sometimes it is a liitle much for me at my age but it is much harder for her mom who is there 24 -7.However she is learning and surprise’s us everyday.People do not give down syndrome children the credit They can learn much and the love they give is straight from Heaven.

    Reply

  13. My child has cerebral palsy, wheelchair bound. A quick trip out requires 3 bags, (meds, neb,diapers,change of clothes,feeding bag, vent etc.) And he’s a teen .Years ago we went away with 2 other families. They wanted to dash here and there and see everything as fast as possible so not to miss anything. After the first day of this and feeling in the way and like I was slowing them down , I let them go without me and I went off on my own. Others /friends/ relatives need to realize when traveling with special needs kids “the usual routine” may not work. You may need to slow down , miss something or help out . I realized early on our family was different whether we wanted to be or not.

    Reply

    2. Amen and Amen! guess what…sometimes when you slow down and savor every moment…it is a amazing what you can see of God’s wonderful world! 🙂

      Reply

  16. I’d like to think my wife would add “a decent husband” to the list. Most people don’t know how hard having a special needs child is on a marriage. I have found that aside from the obvious, I come in handy at an IEP. Nothing like a big ugly man in the room to change the atmosphere from one in which my wife gets ganged up on to one in which she is treated properly.

    Reply

    2. what a HOOT! 🙂 of course a great hubby is a wonderful asset! 🙂 we even had our future school principal come in, briefcase and all…just to observe…why is it that a man makes such a difference! gotta love it!

      Reply

    3. As a special education teacher it breaks my heart to know that parents are left to feel this way. I’m glad your wife has you to stick up for her, but it’s awful she’s felt ganged up on in the first place. 🙁 Stick together, keep advocating for your children, and I hope you have many supportive, understanding teachers in your future!

      Reply

    5. Duff, when DH started coming to IEP meetings the tone changed dramatically. Thankfully, he started to go because another father of a child with special needs – who saw what a difference his presence made – encouraged him to attend.

      Reply

    6. A great husband is a wonderful asset! I also have a great husband that loves our
      son dearly! However, it is not always easy and it can be very hard on a marriage.
      However, it takes a very devoted, unselfish man to hang in there through thick and thin. Apparently you are one of those men and my husband is the other!

      Reply

  17. I’d definitely add that when you hear about our. Eru exciting accomplishments with behavior or academics with my special needs child it does not mean you need to run home and hurry up to get your “typical” child doing it because surely if my child can yours should already be doing it. Ugh!

    And, when I share about my special needs child’s success with something, its not appropriate to share similar successes of your younger “typical” child, we clearly are not celebrating the same successes.

    I’ve had both of these happen recently with a very close friend when we discovered my daughter with Ds could learn to sight read.

    Reply

  18. Very well written, but I would like to add, when you see me out and about with my nonverbal son with Down syndrome and you make a point to say hello to him, please introduce yourself to me! He can’t tell me who you!

    Reply

  19. I have been surprised how lonely it has been since adopting our daughter. We used to be invited to go out with other couples our age, I used to be invited to do lunch or coffee. I understand we might have to plan ahead now but it shouldn’t make it harder for them to invite us.

    Reply

    1. It’s true. I know that we don’t get invited as a family as much as we used to. It can be lonely, Anna. I hope some of your friends read this and other things to catch a peek into your life and invite you out for coffee real soon.

      Reply

  20. I would add just listen to me without trying to ‘fix’ the problem. You can’t fix it. If my child has a meltdown it’s not because he’s a brat or has never been disciplined. It’s because he has a brain injury. If you can’t deal with a ‘big’ boy acting this way we prob shouldn’t be friends. Just sayin.

    Reply

  21. Well, many thanks for that. “The best support a mother receives is from other moms.” In that case, its fairly clear that fathers arent needed, so we might as well just clear off and leave all the real parenting to the mums. Or is that what you meant?

    Reply

    1. Hi Rob, you are so right to bring that up. I did gear this post towards mothers, but in no way meant that fathers aren’t needed or vital. I’m so sorry! My mind was on helping mothers who don’t have kids with special needs get a taste of how it is for us special needs moms.

      But I will go in and tweak it a bit so I don’t come off sounding like a dad hater lol. My husband is a wonderful father, and for sure, my number one support!

      Thanks for pointing this out! Have a great day!

      Reply

  22. Great post of needs of Moms….people always need a little education to help them to respond appropriately. Thanks!!

    Reply

  24. it is wonderful to see a list in writing…it is cathartic, and encouraging! 🙂 God is good…always, and even though it is hard to educate friends, many many of them, once you have let them know REAL concerns about being a parent of a child with a disability, some of them come ‘on board’. love ya!

    Reply

        1. Hi Gillian,
          Could you please post the list of the 10 things on my e-mail so that
          I can print it out. It is a wonderful list and I want everyone to see it.
          Thanks,
          Denise

          Reply

  25. Thank you thank you for sharing this! I am the mother of a 9 month old with Turner Syndrome, and I am still adjusting to everything that means… some days its easier than others. I can definitely relate to everything you wrote.

    Reply

  26. Don’t idolize me or put me on a pedestal by saying “oh, you are so strong. I could never do that. I really admire you”. That does not make me feel admired, it makes me feel isolated. It makes me feel like you don’t want to understand my life, and are not giving me permission to reveal my frailties and needs. I need for you rather to roll up your sleeves and get dirty with me, try to understand the journey I am going through by offering to travel part of it with me.

    Reply

    2. Thank You Paula for This comment!

      It makes me bonkers when people share similar sentiments with me. I try to tell myself they are sharing from their heart, in their awkwardness…. but it does make me feel so very isolated.

      and to Gillian,
      Thank you for this article!

      My son is 11 now, he was diagnosed with Kabuki syndrome when he was 3. It was ‘nice’ to have an understanding around what he was going through but there was (and remains) so little information about it, questions far outweigh answers. When people ask ‘what he has’ I want to smile and say a charming personality, if your heart is open to really seeing him! But I shift into neutral and say “Kabuki Syndrome” which results in a blank stare and “I’ve never heard of that”.

      Truly, We face each day, challenges and victories, thankful to have made it through and perhaps stronger as a result… I know I am a changed person because of my little boy. I do tell people that, but I hide within the overwhelming fear of what is to come. I am often paralyzed by the thought of my son’s future. How do you share such honesty with people who often ask only surface questions? You can’t! or well… I guess I can’t.

      People ask how my son is and it is more a medical report than anything else. Don’t get me wrong, I am thankful that they care enough to ask but it is difficult to explain quickly (in our rushed society such is often required). I am also cautious not interject emotion into it, out of fear I will break down.

      I appreciate this post more than words can say and it honestly reminds me that we are NOT alone in this beautiful, sometimes overwhelming journey. To all linked by being special needs parents, caregivers, family and friends, you are in my prayers.

      Reply

  27. What a wonderful post! I would so have loved to give this list to some of my friends when I was first wrapping my brain around my daughters’ autism. I found some of my friends avoiding play dates because they were afraid to ask me about why my girls acted differently from their kids. Thank you!

    Reply

    1. Well, I have a six year old and a five year old with special needs and I just thought of all this, or at least put it into words a day ago.

      I’m glad you’ve connected here, Christina. Hugs.

      Reply

  28. Thank you! You hit every point exactly, we have lost a lot of friends on this journey on imperfection..

    Reply

  29. Awesome! One more; Don’t just assume my child is bad or needs discipline. You shouldn’t judge when you don’t know all the details of what is going on with the child or parent.

    Reply

  30. This is for the siblings of special needs parents as they get older… Please remember that even tho your kids have grown and left the house mine has not and never will. (he is 24) So please don’t leave all the care of our aging parents to me. I have enough to do caring for my child. I will help when I can but I need support too. I am tired and don’t get the luxery of vacations like you all do. So, please step up and HELP!

    Reply

    1. I hear you. DH has four siblings, and guess who does the lion’s share of taking care of Dad, who has Parkinson’s and dementia? You got it, DH. We have two sons with special needs, plus a daughter starting college, and DH’s siblings kids are all NT. Yes, or course, DH should take care of Dad, but the siblings could pitch in a lot more. They use the “well, DH lives closer” excuse but they all live less than 40 minutes away from Dad.

      Reply

  33. My daughter, Sara, has Aspberger’s Syndrome, and she can be quite a handful at times…….thanks for sharing. I feel that the parents are often overlooked; we’re supposed to be strong and able to deal with whatever comes our way, but I’ve had times when I just want to escape for a little while; maybe go out with a friend or by myself. Those moments can strengthen us for the days ahead and help us to be better parents to our children.

    Reply

  34. Here’s one: When your child asks a question about my child’s “equipment” (ie wheelchair, adaptive stroller, adaptive tricycle, AFOs, gait trainer, stander, etc) or why my child behaves in a certain way (talks “funny,” makes that noise, drools, wears a bib, eats mashed up foods), don’t shush him or her and turn the other way. This is a perfect learning opportunity. Your child needs to know that there is nothing scary or weird about what my child needs to participate in every day activities. Instead, bring him/her over. I’ve already heard the question, and I’ll be happy to answer it if you are not. Heck, I might even let him/her sit in it, stand on it, ride on it, etc. This equipment is part of our lives. We’re not ashamed or embarrassed, and you shouldn’t be either. Asking questions doesn’t hurt our feelings, but shunning us does.

    Reply

    1. Love that. ASK questions! One little girl in Polly’s class at school asked why Polly’s face looked different than other kids. Was an innocent question, and a great platform to open up a conversation about Down syndrome.

      Reply

  35. Dang that list is hard to read. As the parent of a typically developing kid, I am sorry. What I want my friends who are parents of children with special needs to know is that I love them and what I say and do all starts from love. Please forgive my awkwardness and missteps. Please give me the benefit of the doubt. But especially, please tell me what you need. I don’t promise to be able to deliver it but I do promise to try.

    You’re right, I do say and do stupid things. To one friend who was describing a particularly challenging IEP meeting, I once said that I thought it would be great if ALL kids had IEPs. What I meant was wouldn’t it be cool if we lived in a world where every single child had their educational needs met. The way we make sense of the world around us is to compare it and apply it to what we know from our own experience. But as I heard that come out of my mouth, I would gladly have jumped into the nearest hole. And that’s nowhere near the dumbest thing I’ve ever said.

    I do want to understand you and your child. Unfortunately there are limits to what I can accomplish around this. Down syndrome, autism spectrum, unspecified learning disabilities, adhd, cerebral palsy, diabetes, muscular dystrophy, pediatric cancer, kids who’ve lost parents, kids who’ve lost siblings, and TBI and spinal cord injury are all part of the lives of people I care deeply for and I feel completely not up to the task of parsing all the needs they have. But I do want to learn, please help me. Recommend readings and websites. Tell me what you want me to know.

    If I don’t get to those readings, if I fail to be supportive in the ways you need, if I say or do the stupid thing, please remember that parenting is hard for me too. While I’m trying to learn about your family and how to support you best, I’m also trying to learn about my family and to parent my child and take care of my aging parents and nurture my other relationships and juggle my finances and manage my career. It doesn’t mean I don’t love you and your child and it doesn’t mean I don’t care. It doesn’t mean that I’m judging you, your child, or your parenting. It means that I am feeling isolated, overwhelmed, and worn out with my own stuff.

    How about we resolve to invite each other out for that cup of coffee more often?

    Reply

    1. Hmmm…see, the problem with this is that while ‘parenting is hard for you too’, we are dealing with ALL the things you are (finances, but much worse because we have to pay for a SN child), marraige (but much worse, because the only time I see my husband is when he’s telling me where my SN kid is at for her meds and we don’t even get to sleep together because we alternate nights for her care), etc. You see what I mean? It’s HARD for me to feel really bad that you can’t find the time to Google, read an article and understand.

      Or…just understand. My bff doesn’t read articles, blogs, etc. She just comes and spends a weekend a month at my house and LIVES it with me. She gets her hands dirty. She learns how to care for my child. She lets me NAP. And she LOVES my child completely. That’s a friend.

      I get where you are coming from, really. But it’s really not an appropriate angle. Because this is about SPECIAL needs. We face things every day you can’t imagine. How many times a day do you pin your child down while she screams in pain and you do a medical procedure? Huh? Do you know what that’s like? So yes, I’m VERY sensitive when someone says, “Well, I read online that it’s not that bad”. This post is about Special needs parents needing something special because they do. How about you just trust us on that since I promise you that you don’t want to live it. 🙂

      Reply
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  41. i think the thing that bothers me the most is when family members think you have it easy cuz you have a disabled child.My sister always tells me how easy my life is because my oldest is disabled and cant get into trouble.Yes he cant get into trouble but his life isnt easy.He cant go places on his own,he will never live alone,cant dress alone or bathe himself.She also thinks i have it easy cuz i get paid to be his nurse and take care of him.Which means no vaction days I love my son and would take care of him no matter if i got paid or not put to have her tell her friends that i have the good life because i have a disable child(who by the way is 30 yrs old)just makes me so mad..I told her once spend a week doin what i do and then tell me how easy my life is.I do have to admit i have a wonderful mom and some friends who will help with him if i need some days to myself.My mom takes him for 4 days in the summer so i can go away to a concert but i worry cuz she is 76 yrs old..but anyways i just wanted to vent and say sometimes the most hurtful things come from the people closest to you.

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  48. And for those parents of children with special needs who grow up to be adults with special needs, the advice is still the same… in spades!

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  49. I have 5 children total. 3 were born with Spina Bifida. I love questions from kids because they are so honest and giving them feedback on their level is so important. My biggest pet peeve has already been posted but I am going to say it again. “You are so blessed” or “You are a saint” or “How do you do it?” my sister in law found your posting because she was wanting to know how to support us. Wow how lucky are we! Out of my husbands 6 sibs she is the only one to ever even ask. I LOVE that girl! I will be posting your writing on my FB page.

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  50. Number 2 is the one that weighs heavy on my heart right now. My girls are freshmen in high school. They are developmentally delayed but don’t fit into any of the categories so there aren’t even opportunities to socialize with kids that have the same needs they do. And they are non-verbal so it’s really hard to make friends with typical kids. They would enjoy some of the things that typical kids do, especially things that are active, but it just doesn’t happen.

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