Dear Relative: What Are You Waiting For?

Dear Relative,

Yes, I’m talking to you.  You know who you are.  You have an autistic child in your family.  It might be your grandchild or niece or nephew.  It might even be your own child.  I know you love him.  You want the best for this child.  I know you grieve for him.  If you had it in your power to give this child a “normal” life, I know you would.  But you can’t.

You see, all of these emotions are normal.  For every family that must contend with autism – in particular severe autism – there is a period of shock, sadness, and feelings of loss.  Loved ones may invest a lot of emotional energy and money into finding therapies – all in an effort to give this child as typical of a life as possible.  You are hoping and praying for the day when he makes great strides – talks, plays, uses the toilet, and learns to read.  That’s wonderful, because hope is what gives us the energy to keep on fighting for our children.

But you seem to be stuck.  You are still caught up in the grieving and all the questions that cannot be answered.  You haven’t moved on to acceptance.  That’s a problem.  Because -while you are busy waiting, praying, and worrying -you have forgotten the child who is right here in front of you.

I know he isn’t always easy.  The typical children in the family don’t scream when you take them someplace new.  They can eat wherever you go.  They love the things you buy for them.  When you talk to them, they respond.  It may seem like all of the fun things you want to do with the autistic child in your life aren’t possible, and that makes you sad.  I get that.  Sometimes, those moments make me sad too.

The thing is, you have forgotten what your job is here.  Your job is to love and accept this child.  As he is right now.  Like every child in your life, he needs you too.  Yet you seem to be waiting.  Waiting for when he can do all the things you would like to do with him.  You spend time with the other children in the family, but you limit time with him.  He isn’t invited to spend the night.  And, because he doesn’t enjoy the carousel, the concert, or whatever – he gets left behind.   You figure he won’t notice.

The problem is that you might be right, or at least you will be soon.   He doesn’t notice you.  He doesn’t know you to be someone he spends a lot of time with.  He doesn’t run to you when you come to the door.   He doesn’t care if he pleases you.  He doesn’t know you love him.  Because love isn’t something that is simply declared – it’s shown.  And because you are busy avoiding what makes you uncomfortable, you aren’t showing it.  You are waiting for him to become somebody you understand.

But this child is already somebody now.  He has things he likes to do.  They just aren’t what you like to do.  He gives affection.  He just isn’t going to do so on command.  He likes to go places.  But those places aren’t going to be loud, filled with people, or in the blaring sun.  There are so very many special moments awaiting you both, and you are letting them slip by.

If you want to have a relationship with him, you’re going to have to do better.  He doesn’t know how to meet you where you are.  You’re going to have to meet him where he is.  Find out what he likes.  Accept his autistic behaviors.  Stop focusing so much on what you want him to be and accept him for who he is.  Take joy in him now.  Because the day you are hoping and praying for may very well arrive.  He is still growing and developing.  Still making connections and learning how to be himself in a very strange world.  And the time may come when he reveals how very much he noticed all along — and asks you where you were.

For both his sake and yours, I hope you have a good answer.

Do you have a relative like this?  What are your experiences? 

33 thoughts on “Dear Relative: What Are You Waiting For?

  1. Megan

    Oh boy, this is so very similar to an email I sent my father shortly before Christmas. He’s a socially inept person anyway and we’re not very close, but the differences in the ways he treats my ASD son versus my NT daughter and other grandchildren are blatant. He, of course, denied everything and said he doesn’t want to do the wrong thing. You’ve got to try something before deciding its the wrong thing, buddy. And if all my son wants to do is tell you about trains, then you sit and learn about trains. And maybe you’ll learn something else, too.

    Now we’re going through the overkill period where my father is being very obvious about everything he’s trying. It’s already drifting back to the status quo however. I told him when we talked about everything that I would make my children available to the extent they wish. I would not force anything, and I would not make the first move anymore. If he wants to be Grandpa, he has to show it by his actions.

    Bitter much? Yes. But I’d rather my kids have no relationship with my father, than one that is unbalanced. My 12 year old daughter already realizes that more attention is spent on her than her brother, it makes her very uncomfortable.

    Sorry for the novel! This is a hot topic in our house right now! I appreciate how well you worded this letter/post. It so clearly and calmly states your child’s needs.

  2. Kelly

    I LOVE this post and think that it should be handed out at Thanksgiving or Mother’s Day brunch when those relatives are clueless! Thank you for sharing!

  3. Niksmom

    My MIL could have really used this letter. She passed away a couple of years ago; she could not ever connect with her only grandson. In fact, she was very quiet about his existence for a very long time. I spent a long time being angry then sad. Then, I simply stopped caring and Nik and I left her in our cloud of dust as we kept moving on.

  4. Frances

    My son, who has autism, will be 12 this spring. He has 13 aunts and uncles, all of whom have chosen not to have a relationship with him. He knows who they are, and he asks why he doesn’t see them. I don’t have an answer for him. Their total rejection of an innocent child was, and still is, a shock to me.

    1. Magda

      I am in a similar situation with my siblings who only come to visit if there is a birthday or some other family occasion. It’s sad but true-most people don’t spend enough time with their own family never mind others..

  5. greengeekgirl

    This? hits me right in the feels.

    My parents and family didn’t know that I had Aspergers, but they did know that there was something “off” about me (and my mom.. who may also be on the spectrum–she’ll never pursue a diagnosis, but when I was telling her about my Aspergers, it was like a lightning bolt for her). Mom and I never got invited to anything “extra” besides the major holidays; after my mom left, that trend continued. I know that it’s not that they don’t love or care about me… my family is otherwise pretty well-adjusted, so it’s not that they just weren’t good at being family. It was something about us, specifically. A black cloud that hung over just us.

    Now, as an adult, I don’t have a relationship with “those people.” In fact, I’m often angry at them–not just for not being there for me, but also for not being there for my mom, who really needed them. But also? I have had a lot of emotional trauma that I’ve had to deal with as a result of being shunned by people who were supposed to love me and welcome me. We do notice, and it hurts a lot. So it’s not just a missing relationship to worry about… there’s also the very real possibility that the kid is being damaged by people staying away who are otherwise normal and close with NT family members.

    I still remember the exact moment that I realized my family was close and did all kinds of fun things without me. I’ll never forget it.

    1. Krissy

      I know how you feel darling. I was the one getting picked on when I was a kid due to being bi-polar and severe speech implemented that I was in therapy from 3 until I was 12. My immediate family ( mother, grandmother and brother with a few cousins) tried to show as much love to me as possible and let me know I was part of the family. There were times my dad would just pass me onto whoever time to hang out with me when I would go over to his house for the weekend visitation. As a kid I felt like I was burden to those relatives. Now that I have a daughter who has ASD, I have found that some friends and family sometime shun us from get together s and such…..but I have decided to just write them off and hang out with the friends and family who spoil my little angel each chance they get to see her grow and make strides. I know when we see my brother and his family, there is nothing but love for us, especially for my daughter.
      My advice as an adult would be to find your own tribe of friends to be your own family. Those are the ones who will be with you in good and bad times. If your family can not see pass their shameful behavior, then same on them. Good luck sweetie and hugs to you.

      sorry for hijacking the comment section. This post really was personal to me as I have gone through a period of being shunned when I was growing up until high school where certain people didn’t think I would graduated from high school and go to college. If it was not for my mother, my brother, and my grandmother, I would not have made it through my childhood.

      1. greengeekgirl

        Thank you for the reply, Krissy. :) That’s what I have been doing–building my own family, so to speak, since my blood relatives ended up not being so good on either side. My mom did the same.. she got remarried and she calls her husband’s mother “Mom” now.

        But I haven’t totally severed ties with my mom’s family… and I still get kind of ragefacey when they put in the bare minimum effort to try to have a relationship now. Too little, too late, especially without an apology.

  6. greekgeek

    Some of my family members get it. They’ve researched it and it all makes sense to them now. You want to know what? They were the least likely family members I expected to “be on board”. The family members I was close to; not so much. They are in denial, they haven’t read anything about it. And have said “oh are you sure”? “did you have him diagnosed”? He’s fine, he needs discipline” “he needs friends” “sports” etc. etc –Are you kidding me?– ” ::smh:: They are not in his life. He is hurt by it and they don’t even get it.

  7. Lynne Pringle

    Hi I read your posts and cry and smile. I so wish that Faccebook and blogging had been around when Liam was younger, he’s 19 now and I read your posts you capture exactly how I felt, feel etc. Wish I could go back and write down everything we have experienced over the years to share – maybe some day soon I will do it. Liam’s Grandparent don’t get him at all, they try, they say the right things and will speak to others about his struggles but when it comes to face to face, they don’t know how to deal with him, so avoid him. We had so many comments like he’ll need to get used to things, he will have to adjust, or is there nowhere you can send him !!! I gave up years ago. Their loss not his he is sourrounded by love from us and his wonderful sister and our circle of support is made up of those wonderful friends, teachers and carers who do get him. Sad but thats how we roll …. xxx

  8. Dixie Redmond

    Leigh, you have touched on something important. I have so many thoughts about it, but thank you for writing. Extended family members are afraid to do the wrong thing and that contributes to lack of contact. My guy is older, and I am looking back to where many of you are.

    When he was younger he often needed more support than was typical. People were not always prepared or able to understand that. I think because we were trying so hard to do everything perfectly, that we put up a wall as well at times that made it hard for people. Someone commented to me recently about that. People ARE afraid of doing the wrong thing.

    It’s up to us as parents to provide guidance for building successful relationships to siblings, aunts and uncles and grandparents. It is necessary for our children and their extended family. It means a willingness to be vulnerable (for everyone) and it is not easy. It means letting others know what our sons and daughters enjoy and how they can join in with that. It means setting parameters. And not everyone is willing (or able) to do what is needed. People have their own jobs, lives, kids, etc.

    I am sure I will have more thoughts. I’ve already been thinking about this issue a lot, looking back through the years.

  9. BonafideAspie

    Excellent post!!

    I am not a parent, but I have a lot of friends who are parents. I have been in conversations with them about parenting at times, and I’ve been at their houses when childrearing issues come up, issues of discipline, privileges, freedoms, liberties, correcting certain behaviors, etc. And in discussing all of this stuff with lots of friends over the years, I came to realize that there are some things I will never understand because I am not a parent. Being a parent brings certain emotions to the surface at certain times, emotions that I rarely feel because I am not a parent. There are parental instincts that do not kick in until a person has kids, which I never did. So when I’ve seen friends of mine make parenting decisions that I didn’t understand, I learned to accept the fact that there are going to be some things that I don’t understand, or some things that I don’t interpret the same way that people who are more involved do, and there is nothing wrong with that. I’ve tried to help some friends through really tough times, teenage kids, parents near tears because they were so torn about how to deal with some issues. I am an empath, which means I am very receptive to the emotions of others. But no matter how much I can feel another person’s emotions, there are still certain emotional nuances that can only be experienced by parents. It is important for people to know that autism acceptance is exactly the same way. If you aren’t autistic, you will never truly understand what it is like. You can talk to a million autistic people, and you can read every book and blog post ever published, but there will always be some things that you will not understand unless you have it. You have to accept it all on faith, without totally understanding it, just like I learned that when a parent makes a decision, it is their decision and it is right because they say it is. Interpretations of autistic behavior and sensory preferences are the same way. If you don’t understand it, you can still accept it without questioning it or thinking of it as wrong. You might have to humble yourself a bit in order to do it, but….

    Think of this…. Autistics have been doing it our whole lives, accepting what makes very little sense to us, even though it goes against most of our instincts and in some cases is downright repugnant, playing along with dysfunctional social rules in order to appease a majority that we can barely make sense of much of the time, and are even a little bit frightened of. So I think NTs can learn to accept what they don’t understand too, and they might learn a few things that they come to appreciate.

    Again, great post!!!

    1. cartersquared

      Wow, that comment hit me where it counts this morning. Excellent way of communicating what we as parents and other family members need to remember – our kiddos are constantly battling adjustment for us, on a daily basis. The noise, the clothes, the social situations. It’s only right that sometimes we do the adjusting, even though we many not understand why.

  10. Ciara MacGrath

    My experience is a little different. I have two friends with children my son’s age. My son always ignored them. If I asked him Peter’s mam’s name he didn’t know it although this woman was in his life from the day he was born. Both of these women interacted with my son the same way they interacted with all children who they came into contact with and my son just ignored them for years. I used to wonder why they would bother to always say hello and ask him how he was doing when they got no response but was always so glad that they did. Then one day he said hello back and gradually started answering their questions. My son is 15 now and one of these women in particular is a favourite person to visit and spend time with. To this day she just treats him like any other kid and for that I am so grateful.

  11. Miz Kp

    AMEN! AMEN! AMEN! I will definitely share this. I have no idea what they are waiting for. Popping up once a year for a holiday or birthday is not enough to get to know my son and cultivate a relationship with him. This is part of why it is so hard to choose a legal guardian. Thanks you this post hit the nail on the head.

  12. Barb

    this made me cry. My father and stepmother haven’t seen us in about two years now because I kept saying I have two kids. And they said they couldn’t ‘handle’ my son. That is only one small part of many of our issues, of course, but it was the sentence that took me over the edge to say no more verbal abuse, no more toxicity, no more hurt. Not for me, not for my children- especially not for my son. My son is very high functioning. He speaks, he’s 9. His world is not museums, shows, art walks – its video games. He gets frustrated easily, gets angry, gets loud. So no one wants to take him anywhere – only me.And sometimes I do take him. And sometimes its hard. But to see his face this past October when he said “mom I conquered my fear. I rode a horse”. That was worth the patience, the coaxing, the time. And my parents…even some other relatives… they’ll never get to see that side of him. Or know that joy.
    And that is their loss.

  13. MtnMama

    Wow! Did that hit home! My favorite lines… “He doesn’t know you love him. Because love isn’t something that is simply declared – it’s shown. And because you are busy avoiding what makes you uncomfortable, you aren’t showing it. You are waiting for him to become somebody you understand.”

    My husband and I have two daughters with special needs. Our 9 year old has ADHD and anxiety disorder and our 8 year old has autism. Our home can be a challenging place to visit, but it can be equally rewarding. And I guarantee you won’t find many homes that contain more love and acceptance than ours.

    My elderly mother can’t get enough of her granddaughters and spends every opportunity possible with them. She is actively involved in everything from their schooling to their therapies to their favorite TV shows. They adore her and as I watch her health continue to fail, I am so blessed they have had her in their lives to enjoy the one of a kind love only a grandparent can give.

    On the other hand, my MIL is just like the person this post is written about. She doesn’t call or email and will only come to visit for the obligatory birthday or holiday, although she spends a great amount of time with her brother’s NT grandkids each month. She tells other relatives and family friends that our girls are her life (who is she trying to convince?), and her home is littered with photos of them that she printed from emails I send her, but if she truly does love our girls, they don’t know it. Neither do we.

    When my MIL is in our home, the atmosphere is strained and awkward. She has chosen to be so far detached from our lives, the girls don’t care to be around her. She will come AFTER their birthday parties because she is uncomfortable being around special needs children and their families (although she phrases it as if it’s the noise she can’t tolerate). Our girls don’t care to be around her but they do notice her. They sense her toxicity. They sense her detachment. They feel her negative aura and they avoid her/it. Our autistic daughter feeds on the energy of those around her (Ex: If someone around her is sad, she becomes sad. If someone around her is angry, she becomes angry.). My daughter was so impacted by my MIL’s negative energy the last time she was here, she asked her when she was leaving. I have never before heard her ask that of someone.

    My husband and I spent several years longing for his mother to want to be an important person in their lives, but as time goes on, our kids make it known to us that they don’t need or want her. As sad as that may seem, to us, it is actually a blessing. When we asked ourselves if this someone we genuinely want to be in their lives or someone we feel obligated to have in their lives, the answer was clear. We have accepted that she is not going to change and we are a happier family for it.

    If you are waiting/hoping for your relative to change, you may be wasting valuable energy that you could spend on someone who is more worthy. When we realized that some limbs on the family tree are okay to trim – and gave ourselves permission to let go – a huge weight lifted.

    Thanks for “listening”… now I’m heading to the kitchen to help my mom make cookies for her grandkids.

  14. Debbie

    This is such a wonderful post! It makes me take stock of how I interact with our grandson. It is also such a fine line you want to make sure they love you, but you have to be careful not to neglect the other children in the family also. This post is perfect!

  15. Jenny

    Wow. Totally blaming the family member. This letter could have been written to me. I can see my family member writing this in the belief that I am the cause of the broken relationship.

    What you don’t understand is that YOU (a general “you”) are the barrier stopping the relationship you purport to desire. You make it impossible to spend any individual time with the child. You hover. You shelter. You are jealous of anyone else who tries to get close. In addition, the dietary and sensory restrictions you place as a precursor to spending any time, make it almost impossible to DO anything with the child. Every step is walking on eggshells – except I can’t give the child eggs! Or dairy. Or gluten. Or sugar. And you don’t provide me with a list of what the child can eat. Every suggestion I make for plans with the child are met with a negative response – That will be too loud. Too crowded. Too many lights. Over stimulation. Etc. You are the wall I have to go through to know this child.

    So I’m taking my cues from you (again – a general “you”), mommy dearest. Maybe someday you’ll let me in, to get to know this child I love.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Jenny, it sounds to me as if you are having an experience that is not typical and that you are perhaps resentful of some of your family members. For starters, most of us do not have our children on a restricted diet. Many do have food aversions. But I provide anyone watching him with a list of his favorite foods. I doubt I’m the only one. And I think that I speak for most parents of autistic children when I say that we have no reason whatsoever to be “jealous”. What would we be jealous of? Children naturally love their parents above others. I would give anything for my son to form meaningful relationships with others and am thrilled when he does.

      You have described being with your grandchild as “walking on eggshells” — due to his parents. I think this is where you could benefit from doing some research about autistic behaviors. The child’s behaviors and differences are not the result of his parents — no matter how protective they may be. They are protective of him precisely because of his behaviors and differences. The fact that you appear irritated with the precautions you must take with him says much of what I believe your misunderstanding of his neurology really is.

      Clearly, you are angry with someone. I hope that anger gets resolved. I suspect it is what is really preventing you from getting to know this child — whom I am certain you really do love. Best wishes.

      1. Stacee

        Sadly, I’ve had experiences very similar to Jenny’s – my nephew has autism. B *can* be a sweet kid.

        But my sister (his mom) has spent the last six years canceling plans at the last minute, making insane demands and then canceling at the last minute, rejecting each and every suggestion for activities ALL our kids can enjoy (“it’s sensory friendly matinee movie day on Saturday, wanna take the kids?”, “let’s go to the NY Transportation Museum (B is obsessed with trains)”, “the girls are dying to see B, wanna get together? We’re free Tuesday night or anytime Saturday and are happy to let you pick the activity”) and refusing to intervene when B hits my girls (hard enough to leave ugly purple bruises) and destroys their stuff. Repeatedly.

        My sister also insists her life is a billion times harder than anyone else’s. She has spent six years not returning calls, not helping with our elderly semi-capacitated parents (I do 80% cheerfully!), making everybody jump through hoops and bitching about how imperfectly we jump and taking *everything* personally. Even if it is CLEARLY not. (Hard as it is to believe, I did not buy new fluorescent lights, get a new TV or renovate the porch for the express purpose of making him miserable).

        I love B and my girls love B– they’re super-duper understanding about his autism but they’re now scared of him. And I don’t blame them. She does!!

        And my sister has a martyr complex like you wouldn’t believe and is a total pain — for years and years, ie not overwhelmed by stress of a new diagnosis.

        She feels excluded from family events — but she’s excluded herself!

  16. angela

    I am a mom with a 7 year old child with Autism and Epilepsy. I’m wondering where the righteousness in this post comes from? Who are you to tell someone when they should stop grieving and stop asking questions that cannot be answered? I find it a little offensive and judgmental, coming from someone in the autism community, telling someone they should not be “stuck” and to tell me what my job is as a parent. Not everyone grieves the same way or for the same amount of time, it doesn’t make someone right or wrong if they still struggle with this every day and I do and I’m not ashamed to admit that.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      My “righteousness” comes from my own experiences — and the experiences of other good friends (also special needs parents). I write my own truth — which may or may not speak for others as well. If you were to read other posts of mine, you would see that I have also addressed the issue of grief. My own — which I have admitted often. The focus of this post was not to deny those feelings but to make the case that it is important to have a relationship with the child that IS — not the one the relative wishes him to be. A mother of two grown severely autistic sons once told me that her greatest regret was not enjoying them while they were little. She had spent so much time worrying, shuttling, scheduling, etc. that she missed out on enjoying the children they were. I have a relative who has this issue, and it saddens me that this individual is missing out on the joy that is my son — as he is. I assure you that I, too, grieve as well. Every day. But that grief is not a good enough reason for loved ones to avoid forging a real relationship with him.

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