I thought it would be better by now, but it’s just getting worse. My son, Alex, as most of you know, is Deaf, and he hates masks. Anyone dressed in a costume is an extreme cause of stress for him, from the Easter Bunny, to Santa, to his school mascot. I believe it’s mostly because he can’t see their facial expressions, and thus can’t determine whether or not they are friendly or threatening. Whatever it is, Hallowe’en is the worst time of year.
This morning, getting him to go to school to spend the day with his friends was difficult, to say the least. He doesn’t seem to understand that the people he knows are inside the costumes. He’s sixteen years old physically, but at a mental age of six or seven. It’s not likely to get any better from here.
My concern is that I’m perpetuating the problem. Today I drove him to school so I could be there to reassure him everything was okay. He was nervous (he’s been having anxiety attacks every night before bed for the past week) even though he was able to explain to me himself that masks and scary costumes were not permitted at school. So okay, he needs support. I think there’s a fine line between coddling him and reassuring him when his fears are legitimate. But should I be the one supporting him at this point in his life?
I’m not going to be around forever. As he becomes an adult, there will be a time when he can no longer run to Mommy when there’s a problem. I believe he needs to start, at some point, (soon?) to rely on society to feel safe.
I’m at a loss. Any suggestions are welcome.
January 4, 2017 at 10:57 am
There is something special about him
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January 4, 2017 at 10:57 am
There certainly is. 🙂
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January 4, 2017 at 10:56 am
Things will change for your boy soon
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January 4, 2017 at 10:57 am
I hope so. Thanks for your comment. 🙂
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January 4, 2017 at 11:51 am
It will… Just believe… You’re great mother… I can tell
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January 4, 2017 at 4:35 pm
I appreciate your confidence in me. 🙂
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January 4, 2017 at 4:36 pm
Yes ma’am
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December 27, 2016 at 1:50 pm
It must be difficult for him just continue to nurture him to the best of your ability, he’s perfect!
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December 27, 2016 at 2:21 pm
Thank you. 🙂
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November 13, 2016 at 10:10 pm
You are doing a great job and would have done the same thing.. anxiety attacks are rough mine wore more like panic attacks .. I’m just glad he has a mom like you.. stay strong..
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November 13, 2016 at 10:33 pm
Thanks for your encouragement, Angy. It’s really tough to watch your kids go through these things, especially when they’re beyond listening and understanding in the moment, isn’t it?
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November 13, 2016 at 11:11 pm
Yea it is .. I had a friend with a special need child.. she raised him until he was 12 and then gave him to his dad said she couldn’t handled him anymore.. his body was changing but he didn’t understand what he was doing.. and I think his dad had to finial put him somewhere.. I just think it’s sad.. and I often think of him and how is he doing.. I just don’t know as a mother if I could have given my child away.. and had nothing else to do with him.. I know I couldn’t..
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November 14, 2016 at 11:10 am
There’s not a chance I could give my children away, unless I was suddenly completely unable to care for them.
I’ve come to understand, on that front, that it’s equally important to take care of myself so that I CAN continue to look after that. We mothers often neglect our own needs until we finally crash and burn. Been there, don’t want to go back.
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November 14, 2016 at 1:25 pm
I will be praying for your health.. and your son.. stay strong..
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November 14, 2016 at 2:01 pm
Thank you, Angy. 🙂
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November 2, 2016 at 3:38 pm
I am sorry that I don’t have any practical advice, Linda. I just wanted to offer you my support and to let you know that I think you are doing a wonderful job. 🙂
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November 3, 2016 at 8:45 pm
Thank you, Judy. 🙂 Every little bit of encouragement helps. ❤
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November 1, 2016 at 3:59 am
Linda, you are such a good mum, you have coped with schools being difficult and all the things life decides to send your way. You are doing a wonderful job, believe in yourself. I don’t know what to suggest are there places you can go to that can help with phobias. Can the school or GP help with a list maybe. I wish there was a magical cure, sadly there is not. All I can say is you are doing your best and you seem to be doing it perfectly and not mollycoddling at all. Send you hugs . xxx
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November 3, 2016 at 8:40 pm
You’re too kind, Willow. 🙂 ❤ I'll see if the school psychologist can help. Hopefully before Christmas. 🙂 Hugs! Thank you, my dear friend.
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October 31, 2016 at 8:00 pm
I world in the field with those with dd/id. I think you are a loving supportive parent. You are providing support yet not being overbearing. Coddling would be to keep your son home and not have him face it at all. These panic attacks and fears may never go away but they can be learned to manage and that starts at home with you. I think you are doing a wonderful job.
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November 3, 2016 at 8:32 pm
Thanks so much for your kind words and your encouragement. 🙂 There are days when I don’t have any choice but to keep him home from school. I might need to try harder, and maybe stay at school with him on days when they have Santa and the school mascot there.
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October 31, 2016 at 7:51 pm
I can’t imagine how you must feel Linda. 😦 Can you seek the help of a psychologist who specializes in children with anxiety? I have anxiety attacks myself and they are so difficult. I hope you find some help and good advice.
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November 2, 2016 at 10:09 pm
I believe the school has a Deaf psychologist who comes in occasionally. I plan to see if he can talk to Alex.
Thanks for your support and caring, Laura. 🙂 Be well.
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October 31, 2016 at 7:29 pm
I just wanted to lend my emotional support for you. Besides that I don’t have any advice, you seem to he handling things very well! Take care!
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November 2, 2016 at 10:08 pm
Thank you, Vic. 🙂
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October 31, 2016 at 7:05 pm
My autistic grandson is also afraid of things he doesn’t understand. We can only get through Christmas by giving him exactly what he asks for wrapped up in paper he has chosen. Somehow getting presents he doesn’t expect causes him severe anxiety. He’s ok with masks I think but then we don’t have Halloween so much over here in Australia.
His mum is also very careful where he goes and what he is exposed too as the consequences can be difficult to deal with. It’s hard to know what’s the best path with this stuff.
She came over here with him on Sunday. Just after they arrived a really bad storm blew in. It was scary enough for adults. For him it was just awful. He kept squealing with anxiety. We have taught him to do conscious breathing and this helped calmed him down a bit. After that we encouraged him to write down numbers. He has always loved the number 4. Now that has progressed to the number 4,343. We convinced him to write it down then he got into the flow by himself and covered about 10 A3 pages with sequences of numbers from 4,340 to 4,346 repeating endlessly. He said the numbers out loud as he wrote for a while but as he calmed down he began singing one of his wordless hooting songs. By home time he was really happy.
It amazed me how writing number sequences could restore order in his world. Of course he is autistic and this is part of spectrum disorders. I guess what I’m getting to here is trying to teach these kids ways they can manage their anxiety through conscious breathing, counting breaths and by doing things they really enjoy, regardless of whether or not the rest of us can understand.
Once again this is a long reply – I hope it helps a bit.
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November 2, 2016 at 10:07 pm
I have an Autistic son as well, so I understand the repetition thing. Surprises go over much better with Alex – unless they’re scary ones. We try not to have any of those.
Autistics tend to go inward for comfort, but Alex clings to me like a small child. It’s hard to extract him, even for something he likes. Breathing has worked at school. Maybe I need to keep that up at home a little more.
Thanks so much for sharing and for your suggestions, Suzanne. 🙂
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November 3, 2016 at 4:22 am
Thanks for your insight into autistic behaviours. I hadn’t thought about it that way. I hope you find ways to help your younger son. All the best – Suzanne
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October 31, 2016 at 6:43 pm
I don’t have any experience with this sorta thing, so I like the suggestions to seek a professional opinion (and a second.) As someone who has panic attacks, if masks brought them on, I would certainly hide away at Halloween…but then, I realize, I’d miss people, and I’d want to get better, so I’d talk to my therapist about it. If that’s how I’d treat me, that’s probably how I’d treat my kid.
Also, you’re amazing and you’re doing a magnificent job with conscious parenting 😀
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November 2, 2016 at 9:59 pm
This is what Alex goes through – he loves the social interaction, he loves people, and he loves special occasions, but he’s so torn by his fears! It’s very difficult to watch.
Thanks so much for your support and encouragement, Joey. 🙂 And for the benefit of your experience as well.
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October 31, 2016 at 6:27 pm
I wish I had an answer for you. We walk the fine line between supporting our little guy’s fears/anxiety, and pushing his limits a little. Sometimes I wonder if I’m helping or hindering no matter which route I go. Hugs!
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November 1, 2016 at 11:08 pm
Thank you so much for weighing in – it helps to know I’m not alone, as you know. 🙂
Yes, it’s such a fine balance between pushing too far (that meltdown point!) and not pushing hard enough where we reach a point where we can teach. It’s stressful and exhausting to have to make these decisions!
Hugs to you too, my dear. 🙂
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October 31, 2016 at 5:44 pm
My oldest daughter suffers from panic/anxiety attacks too. For a while we got some help from a book called ‘What to do when you worry too much’ which we got from Amazon, but it may be a bit young for your son, I don’t know. What has helped us most is making time to talk about worries/ stress/ bad stuff in her life, so she can offload it calmly, rather than waiting till she’s in the midst of a panic attack. When she’s actually in the middle of a panic attack… I hope this doesn’t sound harsh, but the only thing that I find really works is distracting her with humour. If I can make her suddenly stop and see the funny side, it calms her right down – it also tells her that if I’m relaxed, there can’t really be anything bad happening. But every child is different and that may not work for Alex, but hopefully you can find something that does.
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November 1, 2016 at 11:04 pm
SO many of the problems in this house are waylaid by humour! Part of my own problem though is not being fluent enough in my son’s language, which is a terrible thing all by itself. It’s one of the reasons I really need outside help – a psychiatrist who can really get into the depth of what’s going on. I can sign the basics, but it’s difficult for me to even know if he can understand certain concepts.
I thank you for sharing your story. It helps to know that if I can get him to a certain place where I can communicate with him, maybe I can make him see the funny side of things. He really does have a great sense of humour. 🙂
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October 31, 2016 at 5:37 pm
He might still be too young for it, but here, there are social service organizations that specialize in teaching life skills, taking anxiety and other health issues into consideration. Maybe there is something similar there to help alleviate some of your concerns. In the meantime, you are his support, strength, and doing all you can in the name of love. Nothing at all wrong with your approach. Wishing you well.
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November 1, 2016 at 10:55 pm
Thank you, Van. 🙂 He gets the life skills support at school, but I’m not sure they’re doing as much in the area of dealing with psychological issues as much as just dealing with communication. It’s something that needs to be dealt with, somehow. I’ll keep searching.
I appreciate your support. Thanks again. 🙂
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October 31, 2016 at 4:52 pm
Recently my youngest son who has a developmental disability asked me to take him to the dr as he was feeling in his words ‘depressed’. So I did and the dr had me take him him the mental health unit at our hospital because he was having thoughts of self harm. He was also put on a mild anti-depressant. Like you were saying I too feel I have coddled him a lot. He came to live with me some 8/9 years ago after suffering abuse at the hands of his mother. I did everything I cpuld for him to give him a sense of place and belonging. Now days he lives in his room with all the creature comforts he needs and goes to “work” two days a week. He wants a real job but his disability I think will prevent him from doing what he most wants to work in a games shop. So he goes to a meeting once a month with an employment agency and of course there are no jobs for people like him. We have tried work experience, he has in the past held a job but has basically ‘failed’ at it. I know I am partly responsible for his being in this situation but I went the ay I did to try and make him feel safe in this world. Next March he will turn 30 and I know in many ways he is probably only still a teenager. Like you I know I wont be around forever also but he is fortunate in that he has older siblings well aware of him and his circumstances. We do what we have to Linda to make our kids feel they belong and they are safe. You are doing a great job with Alex, I admire you and what you do daily to help and assist Alex. Be his mom and do all you can to stay that to him.
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October 31, 2016 at 10:40 pm
Strange, the things we do for our kids that we seem to beat ourselves up for, isn’t it? Finding the balance between loving them and letting them go is difficult. So so difficult. I want to say to you that you’re doing a great job… but it’s really not that simple. You are, and maybe I am, but it never seems enough.
Your story has helped. Thank you so much for sharing it, Michael. And thank you for your caring and your support. 🙂 I wish you all the best with your son.
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October 31, 2016 at 10:42 pm
Thank you. We are doing ok.
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October 31, 2016 at 10:49 pm
Glad to hear it, Michael. 🙂
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October 31, 2016 at 4:29 pm
Such a stressful situation for both of you, Linda. I don’t see what you are doing as coddling your son. If it reassures him and lessens his anxiety, that can only be a good thing. The issue with him becoming an adult and how to handle that aspect of his life is going to be a trying time for you. He may grow in body, but his mind will always be that of a child. Eventually, he is going to need to be in a group home of some sort when you can no longer take care of him. That will be a hard transition for him no matter what age he is when it happens. Are you receiving any sort of counseling? I worry that you aren’t getting proper support and professional advice on how to deal with your son as he ages. If you aren’t getting counseling, perhaps it is time now to begin receiving it. Just a thought hun. *hugs*
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October 31, 2016 at 10:30 pm
I have the support of a behavioral specialist, but it’s possible that I need to speak to a psychiatrist. I’ll have to find one for Alex who is fluent in sign language as well.
I’m going through all the steps of dealing with a disabled adult, with Alex’s brother. He’ll be 21 this year. So many government agencies quit on a family when a child turns eighteen! Chris may end up in a group home before Alex does, so if that’s the case, I’ll be prepared for that, at least logistically.
Thanks very much for your suggestions, Lori. And for your support. 🙂
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October 31, 2016 at 4:24 pm
You have 3 sons, and it appears that 2 of your sons have one or more challenges. It takes great strength to be there for your children, and often a child with additional needs puts a strain on marriages. If you have been able to weather the storms around your sons and you, write a blog, host challenges, take care of a dog at the same time, and still remember how to love, then you are a stronger person than I could ever hope to be. 🙂
I’ve spent 23 years in the field of developmental disabilities, helping people with Intellectual Disabilities, Autism, and Cerebral Palsy. You wrote, “I think there’s a fine line between coddling him and reassuring him when his fears are legitimate. But should I be the one supporting him at this point in his life?” You are the type of mom I’d like to see more often, a parent who wants the best for her children and not a parent who is so intent on “protecting” that the adult child is not allowed to live life.
You are exceptional in many ways. Trust your instincts.
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October 31, 2016 at 10:24 pm
Thank you. 🙂 I wish I had a marriage to put a strain on… the support of a partner would be helpful at this point. But I am going through this by myself, which is mostly why I’m here, writing this. 😛 *sigh* 🙂
Yes, one of my other sons is severely Autistic… how far away did you say you lived? Haha. 🙂
But seriously, I do want my kids to be self-sufficient. I want them to live as normal lives as they’re capable of . But there’s so much I don’t fully understand. And to be honest, with all that I have to do it’s difficult to make decisions sometimes, you know? I think I need to talk to the school. At least they can communicate with him more proficiently than I can.
Thanks again for your encouragement and your kind words. 🙂 Much appreciated.
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November 1, 2016 at 12:20 am
I’m in Florida. We have assistance for individuals in our state who have developmental disabilities.that combine both federal and state funds. Some will always live at home with their parents, others live in group homes and there are adults who live in their own homes. I don’t know anything about services outside the USA.
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November 1, 2016 at 10:34 pm
We have some excellent programs here in Canada. At times they’re difficult to sift through to find the right ones though.
Thanks so much for your input. 🙂
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November 2, 2016 at 7:45 am
Sifting through to find the right one is a problem here, too. The one thing we need more than anything else is an ear to hear or a shoulder to rest upon when there is no absolute solution.
Writing that last sentence helped me to understand. I think I’ll make that today’s meme.
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October 31, 2016 at 4:19 pm
I have no idea how to help, Linda but I, too, applaud your effort. I can’t imagine what an anxiety attack feels like, let alone what it feels like for Alex. How does he cope when you’re away? If others can supply the support you give, maybe that’s a way to start. I wish I had more to offer.
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October 31, 2016 at 10:12 pm
I’m not sure how he copes when I’m not here – he’s never been in a scary situation when I haven’t been, I don’t think. As lucky or unlucky as that may be.
I appreciate your support, Dan. Thank you. 🙂
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October 31, 2016 at 4:02 pm
Hi, only recently joined you, so I don’t know a lot about you. However, in the UK we have classes for teenagers to do life skills type of things. The students have to learn awareness in and out of home and how to be in different social situations etc. They are usually taken out in twos and three by qualified staff. It is totally different having your friends and a staff member rather than Mum. I don’t know if this sort of thing would help your son. I agree with your son about masks ! Hugs xx
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October 31, 2016 at 10:07 pm
Thank you, Lorna. 🙂 He does have a lot of support at school. His class consists of only three other children, one teacher and one full-time support staff. Unfortunately it seems something is lost in the transition from school to home. I’ll have to look deeper into that.
Thank you for your suggestion. 🙂
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October 31, 2016 at 3:58 pm
I feel for both him and you Linda. I think you are giving him amazing support which will give him the understanding he needs to help himself in the future. There’s no molly coddling here, only love and concern. 😊
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October 31, 2016 at 10:04 pm
Thank you, Ritu. I hope one day he’ll be able to help himself. I appreciate your encouragement. 🙂
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November 1, 2016 at 2:55 am
😊
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October 31, 2016 at 3:52 pm
I wish I did have suggestions. Rather, I’m impressed by how strong you are for him. Like you say, he’s 16 on the outside but still a child on the inside. It doesn’t sound like you’re coddling him. Anxiety attacks are very real and very frightening, even for adults.
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October 31, 2016 at 4:23 pm
Indeed. He had the worst one yet when he came home from school fifteen minutes ago, thinking the babysitter was going to come over dressed up. He’s been sitting on my lap for 5 minutes – luckily he’s still small! 😛
Thanks for your support and encouragement, Marie.
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