autism

The hooded boy

Julie (little Cotton Rabbits)

Toby has been finding life hard just lately and as a result he's been having a lot more outbursts and meltowns. He has
now bitten his hand so much that he's developing permanent callouses on his thumb and
forefinger and I once again have bruises up the
back of my arms from where he digs his fingers in and pinches me if I
get too close to him during a meltdown. He has been stressed a good deal of the time, retreating into extreme stimming and seeking comfort and security by covering his head most of the time.

 

Hiding

This morning we went walking in his most favourite of woods but even there he was 'hiding' under a hat and two hoods and covering his face completely when he found something too hard to deal with – it could be a sudden noise or the appearance of a dog but most often it's something that only Toby knows and the rest of us can only guess at.

 

Hiding2

 

Hide

 

It made walking in the woods a very slow activity, it doesn't pay to cover your face when wood walking as you too easily bump into trees!

 

Bump

At home he has taken to wearing his pyjama top twisted up over his head most of the time.

 

Toby3

And he's not been taking much interest in anything apart from his lego which he's been biting too much for my liking.

 

Toby4

There are no significant changes to everyday life that I can pinpoint so it could be that he's just weary of the winter weather – it is so much harder to keep him occupied when it's cold and wet and he may be missing the trampoline and the carefree feeling of flying that he gets when he's bouncing. Hopefully the arrival of spring will lighten his mood a little.

 

Toby

It's not all been bad though – there have been some positives recently too. Over the winter we've worked hard on 'project socks' and finally he is getting used to wearing socks in the house. To Toby socks have always been something that you put on with your shoes before going out and are most definitely to be taken off and stuffed firmly into the very tip of your shoes when you come back indoors. Seeing Toby wandering around barefoot has always made me feel cold because we have wooden floors which are chilly underfoot in winter, so I'm really glad that he now considers sock wearing a suitable indoor activity!

Next will be 'project pants' which will involve weaning him off of the only two pairs of pants he'll wear at night (as they are now getting too small for him and I can't find the same stripe pattern anywhere) and on to random pants wearing at bedtime. Though I will wait for him to be in a calmer phase before attempting this, tackling it in his current mood would be foolish. Hopefully it won't be too long before a calm patch arrives!

80 thoughts on “The hooded boy”

  4. Have you every thought of a trampoline tent? I haven’t had one but have looked at them on the Internet. I can’t imagine how difficult it is for you, but Toby is lucky to have a patient mum. Roll on warmer weather! Sarah

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  7. They say God chooses the parents for a special child like yours and there is no doubt at all he chose you for Toby. You really are one in a million.
    Biggest hugs from me too,
    A x

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  8. my heart goes out to Toby and to you all x
    He is so lucky to be surrounded by such a nuturing and loving family.
    Sending lots of love your way and lets all wish for spring
    love jooles xxx

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  9. I am with the person who wrote that you are an amazing woman. I have 3 young children and find it hard at times but I can only imagine how much patience you must need on a daily basis. You are an inspiration and I hope that calmer times are on the way for you and Toby. Spring is just around the corner 🙂

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  11. Bless you Julie. Love to you all and hugs to Toby and Amy. I am also sending you my very best wishes for Tuesday. I hope it goes well and you all have a fruitful and fun day.
    Xx

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  15. My children are now 18 and 20 years old, and some things I have forgotten, but I do now that one kept beating itself and the other pulling his hair out. They both have Asperger. What helped for me, but everyone is different is not doing things they didn’t want to do. Not making photographs of them, because they hated that.
    Mind you, those are only things to help you, because what worked for my kids, will not always help others. I know how hard those times were. I wish you all the best.

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  19. Oh spring hurry!! Please hurry so Toby can feel better which means Julie and the rest of the family will feel better.
    I have a friend here that showed me her scarred arms and hands from her son doing the same as yours. Breaks my heart. Levi doesn’t do that to me. His body is scarred from him doing that to himself……. but thankfully he doesn’t to the rest of us. I’m grateful for that….
    Bless Toby. I pray for you all so often!
    XX00

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  21. Sending thoughts and strength your way. Toby is lucky to have a calm and determined mum like you. I don’t want to add stress with lots of suggestions but was wondering if T was trying to reduce stimulation by hiding in his hood. Maybe a play tent at home that he can hide in, til bouncing season starts anyway? Xx

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  22. So sorry to hear you are all having a tough time. The weather looks like it has been awful (I am in Australia where, quite the opposite, we have been kept indoors many days by the heat). Perhaps, along with being cooped up indoors, it is also the lack of light? Seasonal Affective Disorder is quite common in northern climes during winter (I’m a GP) with the shorter days affecting serotonin levels, and therefore mood, in the brain. Perhaps it is a combination of many (unknowable) things, as you say. Either way, the days are getting longer, technically, so I hope things improve for Toby soon. A x

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  23. Stay strong Julie, you are an amazing woman coping with all this with such grace. I don’t know how you do it, if I could I would give you a big hug and sit and listen to all you needed to tell me, but I can’t so instead I hope you feel my hug through syberspace and continue to talk through your blog posts. Take care and look after yourself xxBrenda

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  25. You are a wonderful mum, Julie, and I do admire how you care for Toby. I’m sorry that things are so hard for him – and all of you – at the moment. I hope the weather warms up soon and Toby can go back to the trampolining he so enjoys. Sending you warm wishes for some calmer times this week.
    Helen x

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  31. Tough days hon. Sending ((((((hugs))))))
    thoughts on the PJ situation
    1. My daughter would occasionally respond to VERY soft fabrics, really drapey T-shirt knits etc, and wearing the seams on the outside for less stimulation.
    2. Any chance you could schedule a staged introduction of new pants via a chart/calendar/roster of favoured pants with every pair taking a turn?
    3. Is there a favourite book or cartoon character wearing (generic looking) pants of a new colour/pattern that can enter the role play of the pants repetoire?
    Bets of luck and resilience to you all. x

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  32. We found that the little one with Autism that we looked after also had most days where he only felt comfortable with a hoodie on. Just a thought, have you tried a chew key for Toby? Google Sue Larky Resources to see what I am talking about. We found that the chew toy and the hoody reduced anxiety and resulted in less stimming elsewhere.
    Good luck!

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  42. It’s been a long dark winter, we all feel in need of some sunshine and light (and dryness!) so I can’t imagine how Toby must be feeling. Hopefully Spring is on it’s way and with it some calmer times for you all. Someone mentioned chew keys – I have come across these chewy things in my job with a little lad with Down’s and they were very good for giving him something to stim with other than grinding his teeth or making croaking noises. They come in varying degrees of chewiness and have a good handle so no danger of being swallowed. Might not be as tasty as lego though…!

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  43. I can sympathize with Toby. I stopped opening the blinds a couple of weeks ago – there was nothing outside but a scale of gray values and smog. So cold and dull. I wanted to keep the heat in, dark or not. And I sleep with the covers almost over my head. So I know there’s some kind of safe feeling in carrying your cave around with you. I suppose that the lego is better than chewing through your hand. And better than grinding your teeth. Assuming you don’t bite through and cut yourself. When I used to go to university registration back in the old pre-computer days, it was like a crazy faire held in a dirt floor gymnasium, booths full of classes and clubs and whatever, and the lines you waited in, hoping you’d get the card for the class that would fit into the schedule and program both. It was maddening. I’d always take a brand new yellow pencil, and by the time I came out the end of the process, that pencil was bitten nearly to pieces. So, I do understand a little.

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  45. I think the hardest thing is not knowing what a child like Toby is experiencing. I admire your strength and ability to keep moving forward.

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  46. I hope the sun, the calm times and the trampoline times come soon…the days are getting longer appreciatively now and green sprouts are appearing on the trees…it’s a hopeful time.. hugs, Jill x

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  50. Here in the States, Punxsutawney Phil, didn’t see his shadow. This predicts an early Spring. I’ll be keeping my fingers crossed that the trampoline is soon bounceable!

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  51. Do you have a local gym at a church or something where Toby could run and play w/ out worrying about safety or light or distractions? Post Toby’s pants and we can all look for some like his favorites! You could even write the company! Ebay? Would Toby wear slippers? Bless ur heart and Toby’s!

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  52. I’m so sorry to hear how stressed out Toby has been. This has to be physically and emotionally draining for everyone in the household. Not being able to provide comfort for your child must be devastating. I send all my hopes and wishes for an ease to Toby’s plight. You have the patience of Job…I don’t know how you do it.
    When Toby gets older and much larger/heavier, what will you do when he’s beyond your control? Are there options for parents of these children aside from the parents being the only care givers?
    Joan

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  55. Julie,
    You and Toby and your family are in my prayers!
    When I read this post, I thought about the hooded sweatshirt my grandson received for Christmas. He thought it was very cool and it featured the ability to zip up the front of the hood all the way. The material of the hood front is some kind of see-through fabric, but you can’t see the child behind it. Would this work for Toby to be able to cover his head totally but still see so that he doesn’t bump onto anything when you’re out walking? If I could find one in a size to fit him, I could send him one if you think it would help. Just let me know.
    God bless you all,
    Mary Frances

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  57. Would Toby wear a balaclava or ski-type hood when you’re out? At least these move with your head and would be safer. I think you can get cotton type ones as well that are helmet liners- may be useful for indoors?
    Also, if you ever need people to look out for stuff (eg pants) please do just put a shout out, I’d be more than happy to keep an eye out x

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  58. I just wondered if the fact that Toby is covering his head outside and inside could be that he is having difficulties with light. I wonder if a visit to an optometrist (rather than an optician) might help as might Irlen lenses, don’t know if you have ever tried them.

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  62. I know it is hard. My Sister who is autistic alway has a meltdown after christmas. We think it is a combination of the come down from christmas and the poor light level at this time of the year. Once we get through february things calm down. Hang in there.

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  64. I’m sorry, but what an insensitive question . I imagine these kind of thoughts are quite enough to cope with for a parent struggling and knowing , deep in their heart that maybe the day will come , without strangers reminding them in such a brutal way and asking such very personal and non useful questions…maybe it would be better to tread more carefully ?
    barbara

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  66. Toby is such a handsome child, but there are days we all agree that you should just cover your head and wish the world away. Hope he can wish winter away.

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  67. I’ll be praying for an early Spring and warm sunshine for Toby! I know these days are hard and will keep you in my prayers. Loved the video of Toby feeling free as a bird on the trampoline – too bad you can’t bring the trampoline in the house during the winter! 😉

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  68. HI Julie,
    I am so glad that you share with us the delights and the struggles of life. I am so sorry to hear that Toby is having a time of it. :o( I pray for warmer days so that he can bounce and blow bubbles. I can still hear in my head the tape you played of him jumping some time ago. He sounded so happy. I wish those days to come again soon for him and for you.
    You know I live all the way on the other side of the pond ( on the east coast of the US), but many times when you write about your weather, our weather here is the same. I have a friend whose little boy has Autism and he also has a trampoline in his yard. He enjoys it almost just as much a Toby. After I read your post, I asked his mom what she does in the winter when her little boy can’t go in the lake ( he loves water too that is his soothing activity of choice) or jump on the trampoline in the winter. She said that she does let him jump on the trampoline anyway. If it snows, she shovels it off. Is it possible that Toby could still go out and jump where you live? Just a thought. My friend also said that to replace the water activity, she just lets her little boy play in the tub for exteneded periods of time and she also has a hot tub/spa tub out on her deck.
    Well, I send you love and hugs and hope for spring.

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  69. My love to toby you and your family…This time of year is hard…your a wonderful mom with a heart to hold him close. Hugs to you from Alberta Canada 🙂

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  70. You may be very tired of helpful suggestions, but would a pair of noise blocking headphones help Toby at all? A child at my sisters’ church wears them and they help him function much much better..
    Hoping for warmer weather for you soon.

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  71. Sending hugs from Michigan too. Do hope the groundhog is correct and spring is coming! Know what you mean about not wearing socks, it makes ME cold too lol! Lots of macho men over here take pride in wearing shorts all winter and I shiver at the sight!

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  72. Hi Julie,
    Since reading your blog this morning I have been trying to think of the right words to say but in all honesty unless you are dealing with living with a child with autism on a daily basis I don’t think you would have them. All any of us can do is to remind you of what a great job you do. I’m sorry that you and especially Toby are having a rough time of it at the moment, I have a son with autism and all I can do is be thankful that on the whole the good days outway the bad but one things for sure no two days are ever a like. I also agree with a lot of what has already been said. When the stork comes a calling with that special bundle of joy they pick a special type of person to have them. My son is a little younger than Toby but already the testosterone levels are raging on some days and even though I’ve raised three teenagers before him they are all so very different.
    Stay strong

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  73. I’ve thought for a couple of days what to post as I didn’t want it to sound pitying or contrite but I so admire your patience and peacefulness. What wonderful parents your children have and equally what wonderful, colourful, challenging, joyous, enriching children you have. Your family’s story is carried in the hearts of many of us x

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  74. Hugs to Toby, hugs to you Julie. Here’s hoping that spring will get a move on and make life brighter and lighter for both of you. x

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  75. I’m a SPED teacher and I have a daughter with Sensory Processing Disorder. She is extremely sensitive to stimuli so I remember going through some tough days. Have you tried weighted vests or tight fitted shirts? You can find them in SPED catalogs. My daughter found the pressure they give was soothing since it did not involve human contact. Does his SPED teacher have any suggestions? They have lots of cool chew toys now, some you can wear. My prayers are with you. I hope you have a support group or someone you can talk to who understands. For the longest time, friends and family told me I must have done something wrong.

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  77. Hi Julie, My son has Aspergers and was prone to times like this. It makes the days so long. I feel for you. I found that weighted blankets on his bed seemed to help him have a much better sleep, easing the tantrums and moods of the day. I don’t know if you’ve heard of them before, but they might be worth a try.. . My son is 18 now and still sleeps coccooned under a pile of 10 or more pillows !
    This is one website http://www.friendshipcircle.org/blog/2012/02/13/weighted-blankets-13-stores-to-choose-from/?gclid=CIKOxOHEubUCFY0ipQodMGsAQg
    Sending Hugs for you and wishes for happy days

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  79. I just found your site. Your work is just wonderful . Your son is very special and your love for him comes out in every word you write. My husband and I our raising our 11 year old autistic grandson. He has been with us since he turned three. He is attending public school in an autism classroom,
    rides the school bus. With that said we still has times that’s very difficult. My plus is that I am part of a autistic teaching staff where ore grandson attends. My life is 24-7 with autistic children. My class has 3rd, 4 th and 5 th grade students. I try very hard to support them and let them know how unique and wonderful they all are . Take care and love Toby everyday.

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  80. HI,JUST WANTED TO SUGGEST WEARING THE SOCKS OUTSIDE IN FOR TOBY. IT’S USUALLY THE SEAMS THAT CAUSE MOST ANNOYANCE. ALSO, MY SON IS NOW 18 AND WANT TO REASSURE YOU THAT MUCH OF THE WORRYING WE DO ABOUT THE FUTURE CAN BE UNFOUNDED. CERTAINLY OUR CHILDREN HAVE SENSORY AND SOCIAL ISSUES BUT OVER THE YEARS WE CAN FIND WAYS TO COPE.SOFT CLOTHES ALL THE SAME DESIGN AND NO ZIPS OR BUTTONS WHERE AVOIDABLE. TRIAL AND ERROR SHOWED ME WHAT MY SON CAN TOLERATE BEST IN ALL HIS SENSORY ISSUES. HE DOES NOT SOCIALISE AT ALL AND AFTER A HELLISH TIME THROUGH 4 SCHOOLS I FINALLY FOUND HOME EDUCATION TO BE THE BEST WAY FOR HIM. HE IS SETTLED AND SAFE AT HOME WITH ME AND HIS SIBLINGS THOUGH HE STILL HAS MANY FUSTRATIONS AND FOOD/ SLEEP PROBLEMS. ONE THING WHICH HAS BEEN INVALUABLE IS GETTING HIS OWN COMPUTER. HIS GAMING AND COMMUNICATION SKILLS ONLINE ARE IMPRESSIVE AND HAVE REALLY EXPANDED HIS LIFE. THERE IS TOO MUCH EMPHASIS THESE DAYS ON FITTING IN TO SOCIETY, BEING ABLE TO MIX WITH OTHER PEOPLE ETC. FOR SOME PEOPLE IT IS NOT AN OPTION AND FORCING OUT CHILDREN/YOUNG PEOPLE OUT INTO THE WORLD WHERE THEY ARE OVERWHELMED IS JUST CRUEL! I DID IT FOR MANY YEARS UNTIL FINALLY HE WAS SO ILL MENTALLY AND PHYSICALLY I FEARED FOR HIM. TAKING HIM AWAY FROM SCHOOL AND SETTING UP A SAFE ENVIRONMENT AT HOME HAS TRANSFORMED HIS LIFE. CERTAINLY IT IS LIMITED, I AM HIS FULL TIME CARER AND WE ARE ON LOW INCOME AS I DON’T GO OUT TO WORK, BUT HE IS HEALTHY AND HAPPY AND THAT IS PARAMOUNT. MANY PEOPLE DON’T REALISE THE LEVEL OF SUFFERING THAT SIMPLY GOING OUTSIDE OR INTO A CROWD CAN CAUSE TO A CHILD LIKE OURS, BUT HOODIES, SUNGLASSES, HEADPHONES ETC ARE INVALUABLE WHEN WE MUST VENTURE.WE HAVE ALSO GIVEN UP ALL INTERFERENCE BY DOCTORS, SOCIAL WORKERS,PHSYCOLOGISTS ETC AS THE APPOINTMENTS AND DEMANDS WERE TOO DEMANDING. WE HAVE SETTLED INTO OUR OWN WAY AND I HOPE YOU WILL FIND YOURS TOO 🙂

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