images-2 Raising a child with a sensory disorder, whether autism or not, is always a challenge. When younger, Steven was the type of kid who would have a huge meltdown if there were tags in his shirts or seams in his socks. Meeting new people was too overwhelming, and a change in his schedule would send him into a tizzy. Holidays were disasters and birthday parties…forget it!
Not used to going out to restaurants because of Steven’s behavior, we threw all caution to the wind and went out to a dinner buffet for my 35th birthday. We chose a very large booth waaaaaaayyyyyy in the back of the restaurant, away from the noise and the crowds. Six year old Steven, who was still on a liquid diet due to sensory issues, curled up in a ball in the corner of the booth. He pulled his hood up over his head to block out surrounding activities and had a jiggle toy in each hand which kept his fingers busy. Giving him a wide berth of personal space, I was pleased as he sipped on his can of Ensure and was part of my birthday dinner. We talked in a soft, low tone and Steven even participated in the conversation from time to time.
It was a delightful night out…until SOMEONE told the staff that it was my birthday. (I suspect is was my youngest son, Angel, who was always selfishly delighted when Steven acted up, thus in his mind reassuring his place as the “good son”.) The staff came over with a lit candle on a cupcake, and sang Happy Birthday in out of sync voices. Steven immediately jerked up from his position, covered his ears and started to screech. He threw himself on the floor under the table and started banging his head against the wall. The happy moment was gone. I imagined people were looking at us as though we were the worst parents in the world! For the first and only time in my life as a mom, I emotionally stomped out of the restaurant in tears, bemoaning the fact that I couldn’t even have a normal, birthday dinner without accusing eyes watching as my husband carried our screaming child out. I was sure they thought he was a spoiled brat who couldn’t behave. Little did anyone know that he had been born to a homeless, schizophrenic mom addicted to heroin and cocaine and that he was so emotionally fragile in those early years that we could rarely leave the house. Little did anyone know that our family had worked hard to help him develop to the best of his abilities, working on his sensory issues so that he could fully participate in our family life to the best of his abilities and that it was a huge accomplishment that we were able to go out to the restaurant in the first place.
Both Steven and I calmed down quickly in the car and life returned to normal. Little did anyone know how deep our love and acceptance was for this child and for all of the issues that came with him and for all of the issues which were to come.

************

For more stories about Steven’s childhood, please, read my book. Here is a link:

https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

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Comments on: "Jiggles, Coat Hoods and Personal Space" (34)

  1. Jackie Saulmon Ramirez said:

    Oh boy, you sure have a lot on your plate!

  2. Listen, I am not sure if people really do judge as badly as we often feel as parents. I remember one time, when my son, who does not have an excuse of sensory issues, through a tantrum *in the middle of an intersection*, I am still not quite sure why he got upset, and I sure did not have time to explore it being short of hands with two less than 3 year old kids, a stroller, a toboggan and groceries. Under the arm he went, kicking and screaming louder than a fire engine, and I just tried to get us off the road as quickly as possible. I saw a couple walking pass looking loooong at us from the corner of my eyes. I was fuming (it wasn’t the first time with him, he has always had a strong will) and thinking, that “you better not say anything right now”. They came, talked to my calm daughter nicely while I was trying to calm the son down, and then they looked at me, and told me that I’m doing well and just keep on doing what you do, it will get easier in a few years.

    Since then I’ve chosen to believe there are more people out there, who get that you do your best but you just can’t always prevent kids to “act out”. I remember once sitting in a restaurant, when a boy, who seemed to me autistic, started to howl and bang his head to the wall, the staff came to the pretty stressed up mum, and they asked her if it would be alright to offer her a cup of tea now and “please, take as long as you need”. However, she did scramble off pretty soon with her son.

    Anyway, I think the job you are doing is amazing, and it makes me also relieved to here you share the same sentiments as every mother would/ has.

  3. I work at an airport and many times there are children who are “throwing fits” while their poor parents are trying so hard to keep them calm. I have never thought, “oh what a brat”. I just chalk it up to being extremely tired of being cooped up and being in a very strange environment. Kids act up from time to time and anyone who has had children know you seldom have complete control over behavior. I commend you and your husband for the amazing job you are doing with your kiddos.

  4. Some people can’t appreciate the love and sacrifice given to the ones we love. Hi I’m Angelique aka Angel

  5. Melt downs happen don’t dwell on what people might think. You are an awesome Mom and those that matter know that.

    • I have learned that since then, but it sure was difficult for the first few years! (Especially when some family members were among those who thought he was a brat!)

  6. Hello I know the feeling sometimes of wanting a family outing to be ‘normal’ but accept in reality it never will be prob what other people call normal we have out own bench marks to determine that. I think we judge ourselves harder than others sometimes and that makes us feel like we are being judged. You did well you do well and I take my hat off to you xx

  7. I am so happy to hear that he could go out! He did so well. I have a son who will start to cry and yell at singing out of tune.

  8. I completely feel for you. My son’s sensory issues weren’t quite as severe. But we didn’t eat out in restaurants for about 3 years when he was about ages 2-5. He couldn’t handle the overload of all of the people and their energies in a restaurant; and how he coped was by needing to run around. I do remember taking him to our local county fair when he was about 2 and was in the stroller. As I pushed him around the fairgrounds, he pulled his blanket over his head. I finally realized that taking him to certain places was no for, and even overwhelming for him. You amaze me that you have dealt with not just one, but 5 special beings!

  9. oh goodness, this made me tear up reading it. I’m here at home, my birthday tomorrow, and my wonderful boy with me, and like you, I feel so lucky to have him. I love his genius, and his many challenges. I think it’s so hard for onlookers in a situation like this–I’m sure they aren’t judging in a terrible way, but perhaps just don’t know what to do. They sit stunned instead, I suppose because their version of normal just isn’t ours. Sensory issues are certainly tough, my son has issues with music or voices being too loud, weird smells, has a tough time sitting in his chair for too long, and has a peanut allergy, so it’s sad. We keep outings to restaurants to a minimum, mostly for the allergy reason–he does actually enjoy going out when it’s the right place and they can serve his meal safely–we just get tired though and stay home most of the time though. Anyway, thanks for sharing your story…

  10. Reblogged this on counselorssoapbox and commented:
    Thought this was worth rebloging. Hop you enjoy reading this as much as I did.

  11. We so empathize with you. It was many years before we could go to restaurants with our kids.

  12. Yocheved said:

    Reading your blog, I can’t help but think that G-d sent some extra angels down here to look after the people who need extra love and protection. You’re one of them!

    I know, you’re going to say “No, I’m just a regular mom, doing the best I can. I’m only human.” and you know what? Humility is one of the signs of being close to G-d. The proof is, you are surrounded by blessings every day, and miracles happen for you, because you are open to them.

    (And sometimes, the angels that are sent are the special children. They rescue US!)

    • I definitely believe I have a connection with God. I was sooooo lucky to be born with a happy heart! My family has had several personal experiences with God and I know that He/She is with me always.

  13. Thank you for sharing this experience with us. It enlightens us who encounter situations like this and helps us to be more understanding, caring, and less judgemental. God bless you and your children!

  14. P.S. (I HATE the icon they assigned me. :D)

  15. Sharing stories from your past, like this, really helps those who are going through these experiences, right now. Thank you.

  16. You have one big heart. God bless… Lor

  17. Each time I read your posts, I feel so inspired to be a better mother. Thank you for sharing your experiences .

  18. Although our circumstances are different, we have the same sensory issues with our 6 yr old. He doesn’t loud noises, crowds, and eating issues because of it. Just please focus on your family birthday meal up until that moment that it went wrong. Cherish the moments that he participated in the conversations, no matter how little it was. Don’t worry about what others may have thought!

  19. I’m reading your book and last night I couldn’t put it down! Finally, at 11:00 pm, I forced myself to go to bed. I can hardly wait to read more. Excellent!!

  20. You’re so dear!

  21. Happy Belated Birthday!!!

  22. You are truly an inspiration to me. I am so glad I came across your blog.

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