There was a time NOT SO LONG AGO when my son would sit on your lap…but if you attempted to touch or hold him, he would run. As a baby, he would allow his back to be lightly patted…but never rubbed…though he always loved his feet being rubbed since birth. Hmmm…if Autism could only be triggered and show its head at birth so we could begin our Early Intervention then…how far we could progress!
Now, I hear other parents, mostly moms, with their kids 4 or more…speaking about the feeling of rejection, or thinking the child does not love them…or just the amount of bonding that is not taking place…because the child APPEARS to not want to be held. Even sadder…the child not understanding why they are watching their other siblings, or other family members, or other kids with their parents…perform this ritual and exchange of affection and they are so left out. How painful this is for the caregivers, but how DEVASTATING this must be for the kids!!
My son got his diagnosis at 26 months. He could not be held, not even by the hand, by anybody. The second part of his diagnosis said tactile/ sensory dysfunction. I stayed up every night, against much ridicule by the other half, to read and learn. I studied research sites, joined online research study groups, read other parents blogs and found tremendous hope and a wealth of information in other caregivers sites who HAD success. Like this site, there are no DVD’s you have to buy or books you have to download, this is just our journey and a hope that someone out there might find answers here.
We must break down Tactile/ Sensory dysfunction. Tactile refers to the sense of touch. Sensory is referring to the senses. Autistic children lack filters on the senses. Thusly, their senses, smell, touch, taste, hearing, sight, pain, emotions, etc…are either not enough or exaggerated. There are Autistic children who walk around with broken bones and never exhibit pain, (be careful with this…if you see a limp even without a cry, STOP what you are doing and seek medical attention), and there are those who feel things not only magnified, but in very painful ways. Some Autistic adults, when asked about their experiences with TOUCH say that it felt like bee stings, burns or needles, while some say it was just itchy. For some, the bad sensations would not go away and there lies the kids who are touched in a spot, then proceed to rub the spot until the skin is gone and it is bleeding. There are scientific speculations about the Myelin sheaths, which are wrapped around nerve endings…being either malformed or gone altogether. Whatever science may find…we have to deal what we have before us and at a time when we CAN make a change in its course!
Your child appears to not want to be touched or held. There are spendy, TACTILE, fancy brushes you can buy OR which can be invented at home using a bit of common sense and know how. Or if you are wealthy enough…you probably already got to the right specialists who have told you all of this and you have the ‘brushes’. These brushes, made of different hairs, fibers and textures, are to be brushed against your child’s skin. Starting perhaps with the forearm…and used until the child is accepting of various types of touch. Does it FEEL better? Probably not…but the child stops associating touch with pain or itching and associates it with safe, gentle repetitive treatment, love and attention. With many…though I’m never going to be convinced that anyone gave it their all…not even I…the child seems to improve and allows touch. My son also hated certain surfaces…he wouldn’t touch stuffed animals, so I covered pillows and his bed with fur…he didn’t like foamy or mushy, so we played with cool whip pretending to shave our faces…and so forth. This wasn’t in a book…I just made it up as we went…and it all worked! Remember, I have taken an oath of poverty and do not have the money for the expensive’tools’ which supposedly do the same things.
So let’s go back to the tactile thing. I had so many issues to deal with at diagnosis…feeding, sleeping, eye contact, SPEECH, etc…that I had to decide what was most important. Then I read about the caregivers, MOSTLY MOMS, who could not hug or hold their children…and there was no doubt in my mind of where to start. Holding and hugging are one of the best gifts in life and loving each other is what life is all about.
I read everything I could…about the expensive brushes I couldn’t afford and numerous treatments I would never guinea pig my son out for…but then there was Temple Grandin. If you are not familiar with this ICON of ICONS, then you will know of her many times throughout this site and I would hope, through every legitimate Autism site, as she is the Miracle Worker of the present day Autism World! Then I will tell you about her. Temple has high functioning Autism and a will and a mom who never gave up. In a time where institutions were the answer…they took on their own Autism Battle, and WON. HBO has recently made the movie of her life…which was released for purchase this past August…the 16th…I marked it in my brain calendar…and it is a MUST SEE. It will help you understand so much, especially about the fears, the repetitions, the sight recall, thinking in pictures, the gifts, the picky eating, (or Gustatory Disorder), and about HOPE. Temple Grandin has gone on to get her PhD and teaches at Colorado State. She is an accomplished Author, including, THINKING IN PICTURES which everyone with an Autism anyone should read…or just great reading period, lecturer, advocate and should be nominated for a NOBEL PRIZE for the insight into Autism she has provided. Thank you Temple…even if you did sign Dorrie’s book and not one for us! (inside joke).
So, Temple shows us her pressure machine. What? You have to see it to understand…but in essence, pressure on the body helps to ease the unfiltered million images, sounds, smells, textures, etc…flooding into our children’s brains UNFILTERED. There is a lot to say about this! From doing things which require pulling, pushing, lifting, etc…to weighted backpacks and covers, to what I’m about to tell you…these kids respond to this! I believe all of them would if administered by the right people at the right, (young) times!
I had also read about my son’s sleep disturbance. Well, with every noise, a change in diaper status, rolling over to have a blanket TOUCH him, to his pacifier, or Chupa Choo falling out of his mouth…sleep was full of distractions. Here begins the risk…would the uninvolved, “oh don’t worry, it’s just a speech delay like my brother”, in denial, not helpful, downright IGNORANT now EX…, yell at me and chastise me for what I was going to do? Then I prayed I would get results so that I wouldn’t have to listen to his ancestor’s thoughts about what wasn’t wrong with my son…or this man’s ridiculous notion…which should be illegal…that if left alone, Autism would go away. Ugh…there should be laws against stupidity. ANYWAY…the plan…since the other thing to do, while they are small enough, is to use deep pressure to get past the thresholds of tactile skin. The first step is to make sure they are tired and it is bedtime, and all lights, sounds and movements in the house DONE…(how terribly selfish for the ex to inspire the teens to play American Idol full blast and then walk around slamming doors and cabinets while I spent MONTHS working on the bedtime routine)….FUNNY though, the two times I was NOT there and he had to do it, he couldn’t and complained of being kept up until the baby passed out….after 3 am! (I was at the Emergency Room with a family member). OK, so find a soft couch, put the baby between you and the couch. GENTLY put his feet between your legs which are bent and GENTLY wrap your arms around him, forming a weak type of restraint because he won’t like it at first, then squeeze with even pressure. He will resist. Only you can gauge whether this will work or not…but give it some time! The first few nights, my eardrums were pierced, but the baby was asleep within 20 minutes. Then the time lessened to 15, then 10 and so forth. Within 3 weeks, the baby would begin resting as soon as we got into that position and fall asleep sometime thereAFTER…HE ALSO STARTED ALLOWING HUGS…THEN HAND HOLDING…AND SO FORTH! YIPEE!! Did I get lucky or just try at the right time? The other trick to this is TIMING and ROUTINE, ROUTINE, ROUTINE! Always the same time with the same program ending, or the same CD, or the same bathtime, or the same _______. Then I would sing…ABC’s over and over was his favorite. He would touch my mouth to make me start them again, and again, and again…but I did it. The ‘bedtime to sleeping’ went from 2 hours down to 15 minutes! AGAIN, be sure they are tired. If they’ve had a big nap, it won’t work! Use common sense! The embracing, (the tighter restraining wasn’t needed past about 3 weeks), to sleep and to stay asleep lasted over a year…but then he finally began to sleep on his own…still knowing that a hug, a cuddle, a chupa choo rescue or a round of ABC’s was/ is close by.
I was later accused IN COURT of hugging the baby so tight he couldn’t move and not being a good wife because I had to sleep next to the baby. Oh well…the proof is out and again…IGNORE IDIOTS! You’ll get through all of this much better! It’s not that bashing the ex was ever the goal…but making you realize that many techniques might look ODD to those who choose/ chose NOT TO LEARN about MODERN AUTISM. (No, not a new Autism…just new research and the FACTS). My thanks to my first OT BETH who helped get me through a lot of the touch/ tactile/ sensory issues and who applauded my rather unique, (OFF THE WALL), but VIABLE home therapies. I love her and I so hope she’s following this and knowing what a great difference she made as our first ‘Good Samaritan’ in the Autism Journey.
My baby now falls asleep alone…but not without his birth blanket and a chupa choo, (pacifier). There are too many stories of Autistic adults who still have their blankets, favorite toys, favorite pillows, etc…from their babyhood and childhood…and who are as functional and happy as they can be! Don’t HARP on what you think these kids need to throw away or do to thrive… Growing up is NOT ridding ourselves of our first comforts…it’s learning how to comfort ourselves. How’s that for good wisdom? OK, falling asleep alone is huge and self comforting was a GIANT step! Who cares if he has his blanket in college? I’ll probably sew it into the lining of his graduation gown!
The message here?? Your child appears to not want hugs. Go back to TACTILE. What does your touch feel like to him? Pins? Needles? Poison Ivy? Burns?
**OK, then think of this. This analogy of mine has helped many to grasp this whole emotion. You are a burn victim lying in a hospital bed. Your skin cannot be touched because of how intensely it would hurt…but don’t you really need a hug? Now if there was a way to work PAST the pain and feel OK with HUGS, TOUCH, LOVE, AFFECTION, CUDDLES, HAND HOLDING, KISSING…or even just your face wiped or your hair brushed…wouldn’t you give anything? YES. Don’t mistake Tactile Dysfunction for not wanting to be hugged, or not wanting to hug you!! That’s not fair! My son comes to me numerous times a day for hugs and kisses, he looks for my hand each time we walk and morning cuddles and tickles are a part of our every day smiles and laughter!
*Thank you for reading and feel free to e-mail me questions or topics I have not come to yet in my writing, or in my research. We are all in this battle together.
Next time you see a parent struggling with a yelling, screaming, tugging child…simply walk over and ask if they need your help…chances are not only do they need your help, but you will have just fed others around you a piece of Autism Awareness.