Because nothing sucks worse than feeling alone, no matter how many people are around.
— JD, Scrubs
This quote really hit the nail on the head as far as I’m concerned. It really is so hard to be surrounded by people that you know yet feel so alone and lonely. I had one of those experiences today and it really was hard I’ve got to say.
This morning, Lucas had a birthday party to go to for one of the little girls that he goes to school with. This is only the second party he’s ever been invited to so he was really excited and couldn’t wait to get there. I arrived and walked him inside and watched him deliver the present to the birthday girl then happily run outside and onto the jumping castle with the other kids. I said a silent ‘Thank you’ to God that Lucas is my sensory seeking child unlike Harley’s sensory avoidance because the chance of a meltdown happening with Lucas were far far less. He was in his element today – crowds, noise and fun.
I spoke briefly to the little girl’s mum and she asked me if I was going to drop him and leave or stay at the party. I glanced around at the other Mums all standing around talking and I recognised most of them from school and my decision was made so much easier. I opted to drop and run.
(This might surprise some of you reading because most autism Mums wouldn’t dream of leaving their child in a situation like this. And I do understand why you might be questioning my decision, but let me say that if it were Harley at this party and not Lucas – you wouldn’t have been able to get me out with a crow bar. Lucas is far lower on the spectrum than his brother and doesn’t have anywhere near the anxiety or sensory issues that his brother does. Lucas’ biggest social issue is that he just talks at people non-stop without reading any clues or knowing when to stop).
So yeah. I left.
I got back to my car and sat there for a few minutes chastising myself for being such a wimp. I knew the reason I’d left but I didn’t really want to admit it to myself. I used to be a naturally very sanguine personality who loved to be around people and loved chatting and making new friends – but lately – it’s just all too exhausting. Nowadays, I struggle to be around groups of mothers who aren’t dealing with special needs kiddos because I’m jealous.
That’s right, I admitted it here. I’m jealous. It’s not that I want what they have – and I’m NOT saying that I don’t appreciate what I do have, but sometimes – I get sick of struggling with the basics which seems to come so much easier to other families.
I find it really hard to listen to them talking about their weekend plans, their kid’s latest sporting achievements and share their cute little antics with each other. My heart sinks a bit when I hear them chat with each other about how well their kid is doing at school, or about the play dates they’ve all had with each other recently. And I know that it’s not that these ladies don’t like me. No, it’s not that at all. And I’m sure that they are lovely people with kind hearts, but when you know that you have to go home and back into the war zone that is your daily life – it’s hard not to get a little down.
I rung Paul to let him know that I wasn’t staying after all and we decided to meet up at a coffee shop to pass some time. I arrived soon after and met up with Paul, Ella and Harley and it became pretty clear as soon as I’d arrived that this was indeed the entrance to another war zone…sigh…Harley was overcome by the crowds, the noise and the bright lights and we pulled pretty much every trick out of our bag in an attempt to have a scene free rendezvous without success. I glanced around at the other patrons in the cafe and my heart became heavy again. Some were staring at us, others were a little more discreet but the things that really got me was seeing how care free and relaxed everyone else seemed to be. It was the exact opposite of what we were feeling and at once I felt so alone again.
The stress was starting to show on Paul’s face too so we cut our losses and he took the kids back home, and chalked up yet another failed family event.
I got back into my car and went to pick up Lucas and he ran excitedly into my arms the second he saw me and started talking my ear off about what a great time he had. The mother told me how beautiful his manners were and that he was an absolute delight. She giggled as she told me that he became the rubbish monitor following everyone around with a garbage bag and freaking out if anyone littered! I smiled at her and thanked her for having him and smiled down at my little boy as we headed for the front door. He sung a little happy song to himself as we drove down the street before suddenly bursting into tears that lasted until we got home and beyond.
I’m not sure what triggered it or why he got stuck in a loop but Lucas screamed consistently for the next 3 hours until bedtime. He was distraught, he was inconsolable and he was a complete basket case. Bathing him resulted in me being kicked in the nose and covered in water. I had to wear an ear plug just to get near him because the screams were deafening.
Maybe it was the junk food and sugar overload that did him in? Maybe he is more sensitive to crowds and noises than I had thought? Or maybe I should have pushed past my own personal discomfort and stayed at that party regardless of how being around other mums made me feel. I suppose I’ll never really know for sure. But what I do know is that I am aware that this is “MY” problem and no fault of any of my friends or aquaintances.
So please don’t read this thinking that I have some sort of vendetta against those women who are blessed with neurotypically wired children because I’m not vindictive like that. And I’m not saying that parenting typical kids is easy either, I’m just saying that although I know that I am incredibly blessed with my own children; sometimes I long for a little bit of normal. For my sake and for theirs.
Thinking ahead all the time is mentally exhausting. Trying to be one step ahead of everything is draining and sometimes I just want to go out for a coffee without the drama. I love to be around people but it’s hard to feel so alone.
And this is where I am thankful that I have God in my life. Without Him and His promise to never leave or forsake me – I’d be a goner.
And that’s telling it like it is.
I know exactly how you feel. Thanks for sharing x
Thanks Jodi x
Ah Fi, I can so relate to you! I look around and I’m so envious of people who are out shopping and their kids are walking along beside them and they can do what they need to do! My little man has only been invited to two parties and I was a basket case, worrying about how he would get on and if the other kids would actually play with him and, well you know the drill! It does seem so unfair sometimes to look around and see other families with kids who seem to behave like it says they should in all the books. You don’t really know what they are going through, but you can bet they don’t face physical abuse from their kids and episodes that go on and on and on. We were having breakfast out this morning and my little man had a melt down and you can just feel all eyes on you! I don’t feel that I need to explain, because it’s none of their business but you just feel like saying “yeah, you want to try dealing with this?” Some days it is hard to even go out of the house, isn’t it? But I too am so thankful that I have God in my life, as I know he does not judge and he will not abandon me. No matter how crazy I behave or no matter how crazy the things I do!! lol So please know that you are not alone and feeling jealous is not a weakness, it’s just the way it is, nothing wrong with it! Clearly we were given special kids, because we are special (well that’s the way I like to look at it!!!!). Big hugs and lots of good coffee and if it helps at all, you are not alone!!!
Yes! We are special aren’t we! Lol
And you brought up another great point….the physical abuse we cop from our kids is unbelievable at times isn’t it! And like you I am SO grateful that God doesn’t judge! Lol
That last comment was from me and not Steve!! xoxox Jody
I figured that Jodes lol
I sometimes feel like that too. Thanks for having the guts to write about it.
Gutsy or risk taker? Lol
I wanted to click “like” so you’d know I read this but at the same time I don’t want to “like” what you’re going through. So, I’m typing a rambling, nonsensical comment instead.
Love you Heather xxx
Hi,
I have worked for years under the employ of a Paed who specialises in Autism and, while I have a non-Autistic daughter, I have come to intrinsically adore these children for the world they see that we cannot. I wonder often whether I was in the spectrum as a child myself, as those crowds of mums are difficult to interact with despite a bubbly and vivacious girl.
You are doing a remarkable job with your children and that is where it matters most. You are an inspiration.
Thanks,
Rina
Thank you for that encouragement
you made my night x
I totally relate to this post, and I hurt that you go through this pain of feeling alone.
*AJ is my seeker and he is the one that could stay and play, my *CAL is like *Harley with this.
Always praying for you my precious friend.
Love you to the moon and back.
Leesy. xxxx {{{{HUG}}}} X
Love you too Leesy xxx
{{{{BIG BEAR HUG}}}} coming from England, wishing I wasn’t so far away.
I would have bolted from the party too! When Ted was little there were just some conversations and people I avoided, not because of them, but because of me and not wanting to be reminded of what parenting those days was NOT. When you mentioned the coffee shop, I was seriously hoping you were going to say that you were going to tell Paul YOU were going, alone, for some quiet “coffee and a book” time. A sort of reward. I sought quiet time whenever I could. The sound of silence. Didn’t here it much in those days, nor did I get to sit down much either! And sounds like Lucas was really wound up from a special day, for as you said, it was just his second party. Hope things have quieted down. Hang in there girl!
I plan on grabbing some alone time tomorrow
YAY for alone time!
Okay, so I hesitated putting this link here because it seems kinda like self-promotion, but really, I don’t mean it like that, I wrote it about all those years when we were less than perfect and those around us seemed perfect. And because of the elapsed time, almost 18 years, I could (or least tried) to find the humor in it all… http://lifeandink.com/2012/01/07/my-attempt-to-comically-look-at-the-less-than-easy-moments-of-raising-a-child-with-aspergers/
I thought of this when I read your post today. And thought maybe a laugh would help!
Oh I LOVED that post! Thanks for putting me onto your blog
The sense of “alone-ness” is VERY real… and, you are right! You can feel like that even in a crowd. It’s not “just you”… I often experienced that sort of isolation with Cardiac Kid…. Admittedly, I didn’t suffer from the physical and verbal abuse as well so I can only empathise in part. The jealousy is also very real – but most of us won’t confess it to anyone!!! I can recollect sitting in quiet cafes/ coffee shops looking around at others enjoying themselves with their kids, knowing that my situation wasn’t “normal” – special diet, poor mobility, bleak future, NO “play dates” etc etc. I think that if we can acknowledge the feelings, and be honest with ourselves it is actually a sign of progress and growing maturity on our part. Being honest about it with everyone else is courageous and allowing yourself to be vulnerable, BUT at the same time it allows others to see that they “are not alone”…. thereby helping them to not get overcome/overwhelmed by guilt because they feel that way. Some days are just AWFUL — but other days are much better. I think that God really understands… and that’s why we need to trust Him moment-by-moment. Even THAT can be TOO long sometimes. Geoff Bullock has a song where he sings “In between each heartbeat, Lord…” and I think that’s shorter than a moment.
Loving thoughts and prayers for you XXX – Pippa
Yes! I’d forgotten about that song….- isn’t it perfect
. You know I do trust God and that’s what has kept me afloat in these lonely times 
xx
You know, no matter how alone we feel, we can always come here for support. Maybe Lucas was doing his best to hold it all in and it came out in the comfort of home. My heart breaks for you both on that one because my son does the same thing. Sending you warm thoughts and strength. We may be continents apart but I feel it too. Remember that pain is balanced by the good stuff – stuff those NT moms could never understand. xoxo
That’s whatI love so much about the online autism parents community. You all get me. Sending hugs back xx
Oh Fi, I am so sorry. I know exactly what you mean.
I found this today and thought that you might like it……..
The Special Mother
by Erma Bombeck
Did you ever wonder how mothers of disabled children were chosen?
Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
“This one gets a daughter. The Patron saint will be Cecelia”
“This one gets twins. The Patron saint will be Matthew”
“This one gets a son. The Patron saint…..give her Gerard. He’s used to profanity”
Finally He passes a name to an angel and smiles. “Give her a disabled child”.
The angel is curious. “Why this one God? She’s so happy”
“Exactly,” smiles God. “Could I give a disabled child to a mother who does not know laughter? That would be cruel!”
“But has she patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make him live in her world and that’s not going to be easy.”
“But Lord, I don’t think she even believes in you”
God smiles, “No matter, I can fix that. This one is perfect – she has just enough selfishness”
The angel gasps – “Selfishness? is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally she won’t survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word’. She will never consider any ‘step’ ordinary. When her child says “Momma” for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see…ignorance, cruelty and prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side”
“And what about her Patron saint?” asks the angel, his pen poised in mid air.
God smiles “A mirror will suffice”
Oh wow Di, isn’t that beautiful!!! Thanks so much for sending it to me. Xxx
oooooooooh! That is a wonderful, encouraging piece by Erma Bombeck. Thanks for sharing it with us through Fi’s blog.
That is such an encouraging piece. Thank you do much. Just what I’m needing right now.
When my son was an infant and up to about a year and a half my oldest was an absolute dream child. Quiet, well behaved, easily entertained by myself or my husband, and just an all around laid back kid. We noticed some differences in him like he refused eye contact with anyone but me and sometimes my husband. He didn’t interact with anyone but myself or my husband, and he generally just had quirks that I didn’t notice in other children. He rarely ever cried and when he did it was more like a whimper or “talking” himself out of whatever upset him. When he was about one and a half things suddenly changed. He would suddenly burst into screaming fits, uncontrolable anger and there wasn’t any consoling him. We felt like horrible parents, we didn’t know what to do and they only became worse as he go older. We couldn’t go out anywhere, we couldn’t even go to family events knowing that within mere minutes of us being there we would be immersed in a screaming meltdown. With that said, I can remember feeling exactly as you did. Watching the other kids playing with a carefree attitude, the parents doted on them as if they were perfectly formed beings, and in my head I felt they were all secretly looking down their nose at me as a parent. I knew this wasn’t true for the most part, though I constantly felt judged, but I still couldn’t help but feel like I had failed myself and my child.
I found myself becoming angrier that I couldn’t get through to my son, I couldn’t help him communicate, I could give him any source of relief to his frustrations or my own. It was a constant battle with myself to try and be understanding of something I couldn’t understand and with him to try and get him to … Be normal. Dare I say. He’s been diagnosed for educational purpose, but I still feel that he needs to be medically diagnosed. He and I still battle, but he has progressed greatly. I still feel judged and I still feel isolated, because not many people understand that he can’t neccissarily control some of the behaviors he has. And other children don’t understand that he’s not ignoring them purposely and he’s not being rude, he just doesn’t connect on a social level. He doesn’t understand that they’re trying to play with him, he becomes overwhelmed and nervous in big crowds as well. And when there’s too much attention on him he reacts negatively. People don’t understand, even some family hasn’t grasped the idea quite yet. And that makes it hard, because even though everyone we know, knows about his diagnosis they still treat his behavior like they would any regular child. As if the same diciplin or wording will magically set him straight and that becomes frustrating. Because no matter how many times I tell them he won’t respond to certain reactions or words they still try. Almost as if they’re trying to teach me how to parent.. And that is frustrating and makes me feel small and inferior. I don’t know if that’s just my insecurities in this or if that’s what they’re trying to do.. but that helps me feel soo incredibly isolated…
Oh yes I can totally empathise with you. One of the reasons that I continue writing this blog is because I feel that there is a gross lack of information out there about autism and how it affects families on a personal level. Most of us have at one time or another (even often frequently nowadays) come up against people who just.don’t.get.it.
it’s so frustrating I know and makes you want to go and hide or shout depending on how you deal with things. Rest assured that you are not alone in feeling this way and you don’t ever need to feel small or inferior because you know your child better than ANYBODY and what they think or say about him is something you need to learn to shrug off. (No, I’m not there yet either – I still struggle with this one too).
But please know – you’re not alone, and I send you big cyber hugs ((HUG)).
I clicked “like,” not because I like what happened, but because I love your honesty in sharing this. We’ve had instances where Stephanie would act really great, and then melt down, as though she had used up all the “good.” We also noticed that she would behave better for other people (usually) than she would for us. We actually were okay with that.
I suppose you’re right Jeff….It is a good thing that other’s get to see the better behaviours. It makes us look like better parents
This is a cliche, but I know exactly how you feel.
You know, I am hesitant to attend adhd seminars and small adhd support parent groups because it almost always ends up with me having the biggest and worst scenario. My son has aspergers apart from adhd so the other parents end up consoling me or sympathizing with me. Their situations are so ‘mild’; and easy compared to mine that I inwardly feel jealous, numb, even when I have to say outwardly, “Yes I’ve been there…..”
My sons dr has urged me to attend these for empowerment and support (since I am a separated parent) I dont really know but it really feels emptier and lonelier at times unnerving after every session big or small – so I have second thoughts now.
Big Hugs for you Wenny. ((HUG)) x
I understand how you feel Fi. Even though my daughter isn’t on the spectrum, I feel so alone when I’m around mum’s with ‘normal’ children.
Thank you for your honesty. It’s so refreshing to hear someone being real about things.
You are awesome!
You are blessed. Ill not tell you my story, as you couldn’t relate. Just know that you are envied for the love you can give and receive unconditionally. Enjoy every moment, no matter how hard it may seem. Your story told so honestly, isn’t shameful, I see the love in it, and thats why I feel you are blessed.