Hmmm, a good question. Many little kids, on the spectrum or not, think clothing should be optional. After all, we are born without clothes, right? We made it nine months in the womb, happy, well fed, swimming around in amniotic fluid, totally naked. No one looked at us on an ultrasound and gasped at our nudity. But once we are born, society (unless you live in a nudist colony) expects us to wear clothes. There are days I hate clothes. There are days Boo hates clothes. But we live in Minnesota where it is cold 8 or 9 months of the year, so we need them. So, what is a special needs mom supposed to do?
- Cut out tags and labels, they are itchy.
- Find socks without seams, seams are evil and they never line up right.
- If your child has a favorite color (Boo loves the color red) buy clothes in that color.
- If you find an article of clothing or a brand that your child tolerates or even likes, buy lots of it! Buy it in different sizes for your child to grow into.
- Zippers and buttons are hard. Boo can’t manage them. Sweat pants, shorts with elastic waist bands, t-shirts that pull over the head are easy, and allow more independence in the bathroom. Boo will wear jeans, but only if they are well washed and soft. He does need extra help getting them on and zipped.
- Hoodies are another favorite. They are warm, soft, and if the world gets too crazy, one can always pull the hood up over one’s head.
Finding out what your child will and will not wear takes a lot of trial and error. For this reason, I shop sales at Target and second hand stores. I will not pay full price for a child who is growing like a weed and may flat out refuse to wear a new article of clothing.
Now, this part may seem odd, but getting your child to stay clad takes practice and patience. If you want to play Beethoven’s Moonlight Sonata flawlessly, you have to work at it. (I am still working on this one.) It takes constant repetition to make things become a habit. Little kids have to practice wearing and tolerating clothes. So do bigger kids and some adults. If you have a happy nudist on your hands, start small. Tell your nudist that he/she has to wear clothes when he/she is out of the house. Preferably, you should be out of the house doing something fun. After all, going to the post office is dull, why should one keep one’s clothes on for that? Going to Lego Land sounds much better. Find something outside the home that your child wants to do, but make it contingent that clothes must stay on for the duration of the activity. Sometimes, social stories about wearing clothes to Lego Land are helpful. You can walk your child through the whole scenario of what you will see and do at Lego Land, while his/her clothes remain on! Also, it is often a good idea to bring along a back up pair of clothes while you are out and about. Drinks spill, ice cream melts, catsup spurts out of hotdogs. Boo does not mind stains on his shirts. This might drive another spectrum kid out of his/her mind. And, sometimes, no matter how well your child is trained, accidents happen. Bring along another pair of pants and socks. Obviously, your child is well past the stage of needing a diaper bag, but you still need to carry supplies. I have found that a backpack works best. Lots of people carry packs and this way your child will not be embarrassed. While you are at it, stock the backpack with treats, a favorite toy, the ipad, noise cancelling headphones, or whatever else you might need to make the outside world more tolerable.
Inside the privacy of your own home, you can set your own rules regarding clothes; it all depends on what you are comfortable with. Some families are just fine with nudity. Others prefer that if their child is going to hang out in the buff, he/she does it in the privacy of his/her own bedroom. On your own property, what your child wears or does not wear is up to you. I will add one caveat: nudity is easier to handle if your child is fully toilet trained. If your child is not trained, the clothes and the pull up need to stay on. Before Boo was trained, the pull up would stay on, mostly, if he had clothes on top of it. But, putting him in just a pull up on a hot day was a recipe for disaster.
Okay, so you have tried all these suggestions and your child is still blissfully nude. What is a mom (or dad) to do? Google special needs clothes. There are companies out there that make fun, comfortable clothes that our kiddos can’t get out of (on Google or Amazon, try “anti-strip”). Generally, they zip up the back and have a snap and a clasp over that. They are close fitting, but great to play or sleep in. A side note, these are also really useful for patients with Alzheimer’s Disease. These clothes are a little on the pricey side, but well worth it if you have a kiddo who is adamant about being nude.
These are just a few suggestions that I have thrown out here. I would love to hear from other folks about what they did to keep their child clad. There is also the issue of how to keep your child in his/her pajamas at night, but that is a whole different post. I will be talking about that in a few days. In the mean time, if you have any clothes suggestions, please chime in. Thanks!
“Summertime, and the livin’ is easy.” Ella Fitzgerald. Though I love Ella, I don’t think she understood summertime in an autism household. Like many kids on the spectrum, Boo loves his routine, he loves going to school. He would go to school 365 days a year if he could. Few things make him happier than seeing the big yellow bus pull up at our curb. Yet, there are those pesky summers to deal with. So, how does one cope? Often through trial and error.
The summer Boo was 5 I had him scheduled in every activity known to man, and some only to women. He had music therapy, horseback riding, swimming, friendship groups, the list went on and on. For a while he was happy and engaged, then he began to wear out. He was less eager to set out every day. By August, both he and I were flat out exhausted. I had to remind himself that he was only 5 years old and that that he was a child first and on the spectrum second. All kids need down time, even kids that prefer to have their days highly structured.
So, what does this summer look like? Well, it is still taking shape. His last day of school is June 9. He has the following week off, but his PCAs that are eager to hang out with him. He turns 15 on June 18, and ESY (extended school year) begins the following Monday and runs for 4 weeks, 5 hours a day. ESY is less intense than the regular school year. IEP goals are worked on but there is time for fun things, too. Students at his school go swimming, on field trips, spend lots of time outdoors and generally have a lot of fun. After he gets home in the afternoons, his PCAs will take him out into the community. In July, he has softball practice for Special Olympics one or two evenings a week. The first week in August, he goes to Camp Hand in Hand, a wonderful sleep away camp, designed for kids and teens on the spectrum. He went last summer for the first time and had the time of his life. I had never been away from him for more than a day in 14 years, but he took his counselor’s hand and walked away with her without a backward glance. During the week he showed no signs of homesickness at all. He swam, boated (which he loved) rode horses and adaptive bicycles, walked for miles, had cookouts, listened to lots of music and in general, had a blast. Without a doubt, it was the high point of his summer. I am eager for him to have a repeat experience this year. After camp, we still have about a month before the start of school. During this time, I will follow his lead. If he wants to go out, we will go out. If he wants to hang out on his swing and listen to his ipod, then we can do that. He adores his PCAs and they give him a break from being stuck with mom all the time. He loves to walk to Jimmy Johns, Subway and the local ice cream shop. He also just loves to go for walks and see what is going on in his world. I completely understand this. I have been a marathon runner since the age of 14. I am not terribly fast, but I just love the feeling of movement and being out and about, running the streets and the trails, watching flowers come up, seeing the sun rise and set,depending on the time of day that I am out. Ravi does not seem interested in running, but he can easily walk 8-10 miles in an afternoon. For both of us, running and walking seems to help our ever present wanderlust.
So, how do you keep your sanity during the summer? Let’s face it, though we love them to pieces, our kids are a lot of work and need 24/7 supervision. Ravi must be watched like a hawk or he will just wander off. I would advise some structure, for the sake of all concerned. If your child has ESY or some sort of class or social group, that is great. See if there are local camps or Special Olympics in your area. If you need an extra pair of hands, ask around at your church or synagogue; often you may find some very responsible late high school or early college teens that would be more than happy to help out. If you have PCA services, by all means, use them. Summers should be about creating good memories; lazy morning sleeping in or lounging with mom, cool evening where your child can chase fireflies. Though I often feel that everything should be a learning opportunity, this is not what Ravi wants. He wants to be a teen. He wants to sleep late, eat me out of house and home and lounge around. He also likes to be out and about, but he, like all of us, needs his down time.
I am curious to hear what activities other people do during the summer. I have both over scheduled and under scheduled my child, with interesting results. This summer I am going to let him take the lead. There will be some constants in the schedule, so he knows what to expect, but there will also be plenty of time for him just to be a teen. Everyone deserves that, whether they are on the spectrum or not.
Hair cuts. How do you handle them in your family? Sure, there are lots of cute little salons set up for kids. Your child can sit in a miniature seat, get candy and watch TV, while a stylist clips away. That is, unless, you have a kid on the spectrum. If you have a spectrum kiddo, all bets are off. Taking a kid to the barber is like taking a trip to hell.
My son, otherwise known as Boo Bear, was born with a thick head of wavy hair. It offset his blue eyes and long black lashes. I thought it was adorable; he had other thoughts. He was released from the hospital at the age of 16 days. By the age of 21 days, I knew we were going to have hair issues. He would run his fingers through his long locks, get them tangled, pull, and let out ungodly screams. The only thing I could think to do to keep him from pulling his hair was to have him wear mittens: in July. I took him to visit his adoring godmother, who though not yet a mom, is endowed with a good bit of common sense. She laughed at the mittens and insisted we cut his hair. I was horrified. He was only three weeks old! She pointed out it was 90 degrees in the shade and he was wearing mittens. I had to admit she had a point. So, we got out her husband’s clippers and went to work. Interestingly, Boo Bear did not seem to mind the gentle buzz of the razor. He happily lay in my arms as his long locks of hair began to cover the floor. Soon, I had a baby with a buzz cut. He looked like a very tiny recruit for the Marine Corps. We shed the mittens and he was much happier. I gathered up some of the locks for his baby book.
Fast forward a few years. Boo’s sensory issues had grown more extreme. He now wanted nothing to do with clippers or scissors. Obviously, taking him to a kid barber shop would be paying money for a full on meltdown. So, what is a parent with a shaggy toddler to do? You improvise and you bribe. As I have said before, Boo Bear will put up with a lot for candy. Gummy Bears and Sour Patch Kids are high value treats in his world. So here is the routine we have used for years — this usually takes two agile adults who are ready for a wrestling match with an annoyed squid:
- Strip child down to either underwear or pull-ups and sit him on a beach towel in the middle of the living room floor. I use the living room because it has no carpet. If your living room has carpet, you might want to try the kitchen floor instead; it is easier to sweep up afterwards.
- Slowly introduce the clippers. Let your child get used to the noise. Softly run the clippers over your arm, then his. We use Wahl clippers with a number 4 (1/2″) beard attachment.
- While one adult or parent holds the child in their lap, the other parent makes a quick pass over his head with the clippers. If this pass is successful, offer lots of praise and candy. With one parent holding on with a death grip and offering candy, the other parent continues making passes with the clippers until most of the hair is cut.
- Bring out the scissors to get those pesky bits of hair around the neck and the ears. Show the child the scissors and offer more candy. With one parent keeping a firm grip on the head, let the other parent snip the rest of the hair.
- Brush the hair off the child and let him go, while heaping him with praise and candy.
- Sweep up all the hair and put it outside. Shake the towel off outside. I have a little fantasy that the birds will come and make nests with Boo Bear’s hair. I have no idea if they really do or not. If you are a less sentimental type, you may merely throw the hair in the garbage.
- Give your child a bath to get rid of all the itchy hair stuck to his body. Throw in lots of toys, bubbles, etc.. Make it the best bath time ever.
- When your freshly clipped, scrubbed child is safely in bed, collapse on the couch with your partner in crime and enjoy a stiff drink.
- Wait six to eight weeks and repeat.
As I wrote this, I remember how his first and favorite PCA (personal care assistant) used to cut his hair until he was nearly five. She would just stick him in the high chair where he could not escape, put candy on the tray and go to work. This was a good solution until he was about 5 years old and too big to fit in the high chair. At that time, we moved to the floor.
You may have your own tricks and tips to hair cutting. If you do, please share them in the comments box below. I would love to hear your ideas and you give valuable insight to other parents. Thanks!
Source: The Big T
The Big T? Yes, The Big T. What does T stand for, you may ask? Well, let me tell you. In the world of Dr. Seuss, T stands for “ten tired turtles in a tuttle, tuttle tree.” In our world, T stands for toenails, specifically, the toenails belonging to my son.
Some ADLs (activities of daily living) are easier than others. He can easily dress and undress himself. Heck, he loves to undress himself. He is a clothing optional kind of guy. He needs help to do a good job brushing his teeth. I keep his hair really short, so it is simply wash and wear. But, there are some things that he simply cannot do, and cutting his nails is one of them. Furthermore, he does not want anyone else to cut them, either. This has been the case for 15 years. Some kids on the spectrum can learn to cut their own nails, though if you think about it, it takes a fair amount of manual dexterity. My son will probably never be able to cut his own nails, hence, the task falls to yours truly.
Even as a preemie, he had really long nails. He was so tiny and fragile, I was afraid to go near his fingers with clippers, so I filed them with an emmory board. The nurses in the NICU got a good laugh at the earnest young mama, bent over the incubator and filing her offspring’s nails. Even then, he did not appreciate it.
Fast forward 15 years. He still has finger nails and toe nails that grow at warp speed and resemble talons. If he sees me heading his way with the clippers, he heads for the hills. So, I have a few options. I can put him in the bath after his evening meds and wait until he is good and drowsy. Once he is relaxed I can cautiously set to work, one finger and one toe at a time. This works, but only if he is truly exhausted. The other option is bribery. My son will do a lot for a handful of gummy bears. I get him to sit on my lap and then I wrap my legs around him. I tell him, multiple times, “First nails, then candy”. If we make it through the first hand or foot without issue, I will probably take a candy break in the middle, just to keep the good will flowing. I don’t release my death grip on him, or he will be off and gone. We proceed unto the next hand or foot, repeating our mantra about first nails, then candy. When we are done, I heavily reward him with lots of gummy bears. There is one other option, which I prefer to avoid. This involves putting him into a full restraint and cutting his nails super fast. I don’t like doing this to him, and it is rather like wrestling a spring loaded octopus. He is very limber, strong and fast. Bribery with candy is my preferred MO.
I would like to say that over the years nail clipping has gotten easier, or that he has learned to do it himself. This, however, would be a lie. It is an ordeal we both dread. Your child may learn to tolerate nail cutting or learn to do it him/herself. If you have any tips you would like to share about how you cut your child’s nails, please chime in. In a later post, I will tackle hair cuts.
Many kiddos on the spectrum also have sensory issues as well. Some are sensory seeking, some are sensory avoiding. My son is sensory seeking; he is a “crasher banger”. He flaps, claps his hands together or against his legs, leans up against you, spins, rocks, swings, etc. He loves deep pressure, massage and swimming. He can spin in his swing for hours and never get dizzy. For the last 13 years, we have had one type of swing or another in our house. He uses the swing to decompress. Our current swing is a hammock swing hung from the ceiling on a swivel. This allows him to go in multiple directions. Sometimes he sits up in it, other times he hangs upside down. Kids like my son also usually like swimming. They have a hard time knowing where their bodies are in space, so the feeling of water all over their bodies orients them. Since many of our autism friends are drawn to water, it is a great idea to teach your child to swim at an early age. It is good therapy and just common sense.
Other kids avoid sensory input. They do not like to be touched. A gentle caress may actually cause them pain. Traumatic events include haircuts, hair brushing and nail clipping. They are sensitive to loud noises. Sirens and alarms are deafening to them. Fluorescent lights are torture. Smells are amplified a hundred times. These kids may react strongly and adversely to scented soaps, perfumes, and even grape bubble gum.
Now, it would be nice if kids all fell neatly into these two groups, but life is never that simple. A lot of spectrum kids are both sensory seeking and sensory avoiding. They may like deep pressure, but shun loud noises. They may like being in a crowd, but quickly melt down if it becomes too much.
How do I know if my kid is a sensory seeker or a sensory avoider? Watch and listen. Your child will show you. And, sometimes, a little bit of sensory input is enough. My son may like me to wrestle with him, but he is not going to like being dog piled by a mass of strangers. He likes to go to parties and see people, but after 30 minutes he may want to go home. I learned these things about him by trial and error. Unfortunately, meltdowns may be the best teacher. Things may be going along fine and then boom! he has had enough. At this point, I know when he starts pulling away from me during a massage, or heading towards to door at a party, it is time to call it quits and go home.
Does this mean you will never go out in public again? No! But it means you must take baby steps and respect what your child can tolerate. Look for sensory friendly, autism friendly venues. Go out in public during off hours. Never go out when your child is hungry, in need of a nap, or is just having an off day. And, it you do go out and things get overwhelming, go home, regroup and figure out a better way to face tomorrow.
We usually think about grief when we think about death. But, grief can also come (and usually does) with a diagnosis of autism. Suddenly, the perfect world you imagined for your child is shattered. Your life is now filled with teachers, specialists, IEPs, PECS, and a host of other things you had never heard of before. It is overwhelming.
When Ravi was in his first year of preschool a lovely social worker set up a poetry group for parents. We met one night a week and were just encouraged to write in our journals, compose poetry and share what was going on in our lives. Looking back, it was partly a writers workshop and partly a process group. At this time in my life, I was running around like a chicken with my head cut off. I had a toddler on the spectrum and a newborn. I was learning all I could about autism. I read and read and read, researched and researched. I was positive that if I just learned enough, I could find the magic bullet and this whole problem would be cured. I had a lot to learn. As I was relating this to this wise social worker, she asked me a pertinent question. “Have you taken time to grieve?” Grieve? I thought to myself, who has time for that? I am on a mission to save my son! But grief is an odd and slippery sort of thing. You can ignore it as best as you can, but it will raise its fist at odd times and sucker punch you right in the gut. I could be driving down the road and suddenly, inexplicably, find myself in tears. I would watch typically developing children at the park and want to cry.
Over time the grief diminishes, but never completely goes away. It often comes back at birthdays or anniversaries. You will see your child’s peers graduate from middle school or high school, learn to drive, get their first car and realize that this probably will not happen to your child. This can be very bittersweet.
I encourage you to acknowledge this grief. If you don’t it will raise its head anyway. But do not let it completely engulf you. As your child grows, try to focus on the many milestones he/she has met this year, rather than comparing him/her to the neighbor down the street. You will see forward progress, though it may be slow growth over time. Rejoice in what your child can do rather than wallow in self pity about what they can’t.
Maybe this is your first child, maybe it is not. Maybe there is just a little worry niggling at the back of your mind. This child is not quite like your other children, or the the other children in his/her playgroup. What are some early signs of autism?
Lack of eye contact. Most babies will lock eyes with you when they are nursing or taking a bottle. A child with autism may not. I did not realize that my son did not do this until, two years later, I had my daughter. She may eye contact in the delivery room! I was stunned. Babies look at their moms? I had no idea.
Babbling/language. A neurotypical baby will babble and coo at you and is delighted when you babble or coo back. A baby with autism may not do that. They may not develop language on time, or develop a few words and then lose them (in the case of my son). A baby who is not on the spectrum will make faces at you and laugh when you make faces back. They can imitate facial expressions, even when they are tiny, such as tongue thrusting.
Play. A child on the spectrum will not usually play with toys in a typical ways. He/she may love cars, but only likes to spin the wheels. When you try to enter his/her world and play a game of pretend, such as put the car in the garage, he/she may become very upset. Your child may love stacking blocks or putting cars or toys in long straight lines. Woe to the parent who disturbs this line!
Sleep. Your child may not sleep, or may sleep only a few hours at a time. The rest of the household becomes zombies, but your child is still going strong. For a long time, my son did not sleep unless we wrapped him up like a burrito and then wrapped our arms and legs around him. He would struggle for a bit, then realize that he liked it and eventually give in and fall asleep.
Eating. Your child may be an incredibly fussy eater. Certain smells and textures are physically repulsive to him/her. They may live on a diet of goldfish crackers, and chicken nuggets. For a long time, the only foods my son would eat were pancakes, french fries, spaghetti, and chicken nuggets. It took years of OT and and patience, but he now has a very well rounded diet. He loves vegetables and ethnic foods, the spicier the better. But for a long time his diet was very limited. If this is the case of your child, you may want to add a multivitamin to his/her diet. Also, my son hated eggs. He would turn up his cute button nose (literally!) at foods that had eggs baked into them, even birthday cakes.
This is only a very brief list, mostly of things that I noticed with my son. But if you are noticing lack of reciprocal play, little or no eye contact, a certain adherence to rituals, language delay or language loss, I would strongly advise you to talk to your child’s pediatrician. The doctor can give you references to specialists, early childhood education, and a plethora of other useful materials.
Perhaps one of the most frustrating things about being an autism mom, in the beginning of your journey, is that no professional will believe that there is a problem. Though the word autism had not entered my vocabulary when my son was 15 months old, I felt instinctively that something was off. He did not talk, he did not make eye contact, he had certain rituals that had to be followed. For example, whether or not we were having pancakes, the red maple syrup jug had to be on the table at every meal. Breakfast had to be eaten out of the purple bowl. We could not go in or out the front door, only the back door. He was terrified of loud noises, the coffee grinder, hair dryer, vacuum cleaner, etc.. Slowly, we became slaves to these patterns and rituals. When I mentioned my concerns to his pediatrician, he basically patted me on the head, told me I was an over anxious first time mom, and sent me on my way. I was told that because he was a boy and a preemie, language and other skills would be late in coming. Despite these assurances, the fear that something was wrong remained. At that time, I was pregnant with my second child and chasing an extremely active toddler. I decided to put these concerns on the back burner until after I gave birth. My daughter was born one week after my son’s second birthday. I made an appointment with the pediatrician, and showed up with my husband, two children, and a list of concerns clutched in my sweaty hand. He refused to believe that there was a problem. The only useful information I was able to wring out of him was a number to call for early childhood special education. I called that number as soon as I got home.
The next week two teachers from ECSE (early childhood special education) came to make a home visit. They came with toys and books and games. My son refused to even notice their presence. They asked a long list of questions and within twenty minutes told me that my son was on the spectrum and qualified for services immediately. I was stunned. I knew there was a problem, but just hearing the word autism in conjunction with my son was enough to make my heart break. What I did not know at the time was, this was just the opening of a new door. The teachers left and my head was spinning. Suddenly, the phone rang. It was a childhood psychologist. She wanted to come over the next day. The next morning she arrived at my door. Ravi did relate to her somewhat, but her rapid conclusion was much the same of the teachers from the day before. My son was clearly on the spectrum.
Within a week we had in-home services. He had a teacher, a PT, and an OT come every week. Though he responded favorably to them, I still knew that this was not enough help. I was told I could enroll him in ECSE at the local school. A bus would pick him up every morning and return him every afternoon. My heart failed at the thought of putting my two-year-old son on a bus. (Obviously, the bus had car seats and aides and was set up for little people). A day before his first bus ride, while visiting his soon-to-be-school, my husband took him on an empty bus to explore. My son was fascinated. On his first day of school he merrily hopped on the bus and never looked back. Four and a half hours later, the bus returned and he came bouncing off. As he dismounted, he turned around and hugged the tire of the bus. It was the beginning of a love affair with buses that has continued for 13 years.