I just wanted to share one of my poems about Summer with you guys. It was published in this month’s May-June issue of Dirt Magazine. I’m really proud of it because it’s my first published work in a magazine! It’s a great magazine that focuses on “healthy living from the ground up”. Check it out if you have a chance. Enjoy!
J is one of 16 grandchildren and the only one on the spectrum. My nieces and nephews thankfully all know how to engage, ask questions and speak their minds like most kids. I think sometimes when it comes to J most people forget that they have to initiate the conversation and interaction when trying to create a bond. Luckily most people are very open-minded to any suggestions toward engaging with J, especially my parents. They are always looking for ways to include him when he comes to visit. I’ve learned one of the best ways to bond with J is to engage in a learning activity of some sort. He loves when I teach him things like cooking, a craft, reading, even gardening. Here are 6 activities grandparents or anyone looking to bond with a child on the spectrum can try.
1. Reading– When J goes with his grandparents for the night I like to stop by the library and pick up a few books to send him with something new so he’s not expecting them to read it the way I do. I pick out books that are at his reading level so he can read to them as well. When we read together I like to go page for page with J. I give him lots of time and assist by hinting the sounds of words that are tricky for him. Sometimes he gets so confident he will take over and read the whole book to me. Before he could read as well we spent more time discussing the pictures. I did most of the talking but he was certainly listening, learning and enjoying the shared moment.
2. Cleaning- Although it is not J’s favorite thing to do he does like learning a new skill, being helpful and feeling accomplished when its done. When I want J to help out by cleaning I ask him to do simple things like carry the clothes from the dryer to my bed, and take the dishes out of the dishwasher. He also helps make the beds, and fold his laundry. One of his favorite things is to help fold sheets and blankets because I give him a kiss when our corners meet. Cleaning can be a great opportunity to talk and explain simple tasks that are part of life. I wouldn’t recommend having them help with things that you like a specific or intricate way unless you don’t mind doing it again afterward. This could become frustrating for the both of you if the task is too difficult for the child. Always keep the child’s capabilities in mind not their age.
3. Gardening and Yard Work- When I am gardening I like to give J a little project of his own I will have him dig holes for my seeds or scoop up dirt to fill the holes. I always make sure he is wearing clothes I don’t mind getting trashed as well. His favorite thing is to water everything. TIP- if letting your assistant gardener water your plants, fill the can with just enough water so they don’t over water. Don’t be afraid to enlist older stronger kids to push around a wheel barrel or rake up some leaves. With simple instruction our kids can be pretty helpful. Don’t forget to stand back and admire the work you have accomplished together and always show your pride and appreciation for their help.
4. Cooking and Meal Preparation- J is very curious about what goes on in the kitchen mainly because he is a picky eater and wants to know just how and what is going into his food. I saw this as a great opportunity to get him involved. He enjoys mixing, measuring and pouring. He also likes when I tell him about all my ingredients and when I explain what I am doing. His favorite recipes are dough based, I always make him a personal dough ball so he can roll it around and squish it to his liking for a while. This is a great opportunity to teach sequence and time, for example, “first we do ABC, then we do LMNOP, after TUV amount of time we have XYZ.” If you want to make it a bit easier you can write out simple steps ahead of time to create a visual. Have them refer back to it for each step. Be sure to work in an area you don’t mind getting messy or prep it for the potential mess. Enlisting them for clean up is also a great idea but be sure to keep their capabilities in mind, for example J is good at taking things to the sink, rinsing them off and loading the dishwasher, not so great at wiping the table off without flinging most of it to the ground. Setting the table is also an easy way to make your kitchen assistant feel helpful.
5. Pass Down an Interest or Hobby- whether your handy with wood or like to knit sharing a personal hobby can be rewarding for both grandparent and child on the spectrum. Try to share a simpler aspect of the hobby first for example if you are good with carpentry, teach them to hammer a nail before trying to build something like a birdhouse. Use some scrap wood so they can practice it a few times. Maybe bird watching is your hobby, most kids like using binoculars, make a game of it by seeing how many birds they can find. Maybe photography is your hobby, start out simple by teaching them to pick a subject, maybe a favorite toy, and take a picture of it.
6. Prayer- I recently started teaching my son about prayer and the belief in God. I have taken him to church when no one is there but have not yet worked up to a full mass. When I was a kid my grandmother taught me prayers and took me to church all the time. Our faith is still something we share to this day.
Whatever activity you decide remember to always keep the child’s abilities in mind, they maybe thirteen but also maybe unable to cut with a knife. Don’t ask them if they want to do it, invite them to do it with you. Try to make each activity fun and exciting even if it seems simple and mundane to you. Explain the importance behind it. Keep instructions simple. Always be encouraging but allow them to make mistakes and when correcting BE PATIENT AND KIND. Share your own stories about how you learned this skill or why you enjoy said hobby, they may not be able to communicate much back but they are listening.
Let me know if this post helps or share your own stories and ideas for activities you have found to be enjoyable below. Thanks.
We had an outing with J’s team mates this weekend and I basically set this event up for disaster. First mistake, I scheduled a visit with grandma and grandpa Saturday night. He stayed up pretty late hanging out with his grandparents and I didn’t state the importance of getting him to bed at a specific time either. It had been a while since he slept over so I forgot how out of sorts the transition back makes him. I didn’t even stop to think that it would have an effect on his behavior for the outing.
Before we left for the party we had dinner and I gave J an ice cream cone for dessert, mistake number 2. The event was on a Sunday evening normally I like to be home by 6:00P.M.on Sunday nights to give J time to settle before he starts the week. His behavior had been so good lately that I thought it would be ok. Mistake number 3. The party was at one of his favorite places so I thought it would be awesome for him to experience it with his buddies and didn’t want him to miss the opportunity even though it didn’t coincide with his routine.
When we go to this place as a family we tend to go late at night towards closing when most young kids aren’t there, since small kids are J’s biggest trigger. Being that this was an event for kids on the spectrum I figured it was private and closed to the public, but I didn’t ask, and it wasn’t. Mistake number 4. There were little kids everywhere and the noise level was up there, something I didn’t prep J about. It was definitely too much for J. His dilated eyes darted everywhere and he couldn’t keep still. He was clearly over stimulated and very uncomfortable. We decided it best to go.
As we were heading over to the area where our party was congregating to say our goodbyes, J’s behavior spiked and he started to gear up for an outburst. Within seconds he honed in on this one little kid and lunged to grab him, something he will do when he has reached his max. He usually just squeezes the person wherever he grabs them, but sometimes the squeeze is very hard and definitely scary to a small child, as my boy is 5’9″, 130lbs. I stopped him just in time, looked at the kids father and mouthed “I’m so sorry” as I escorted J outside. I told him “you do not grab little kids.” I followed it up with a punishment of no iPad for the rest of the evening and took him home.
It had been such a long time since we’ve seen this behavior from J, so long since we’ve had to leave some place because he was overwhelmed. The place was too loud for him, his triggers over ruled his ability to cope. On the ride home J went on crying and repeating his usual “remorse script”. To those of you who don’t know what scripting is in terms of Autism, it’s a phrase a child with autism will repeat over and over, sometimes they learn it from a movie or overhearing someone say it. To someone unfamiliar with them it would sound irrelevant or like nonsense, but I knew this particular one’s meaning having heard it similarly used before. It meant “I’m upset that I messed up, I’m upset.”
As I drove I tried to tune him out and began to dissect what just happened. Unfortunately when it comes to J, I’m a dweller, tend to over analyze, and I am my toughest critic. Besides the 4 mistakes I listed above, I found several more things I could have done differently as I replayed the last 20 minutes over in my mind. It took every ounce of my hormonal second trimester self not to cry about it in the car. When we got home I asked Big J to get little J ready for bed, I needed a moment to just cry it out and deal with the emotion away from J. I was feeling so disappointed. Disappointed because he grabbed a little kid, because he couldn’t enjoy himself with his buddies, because I couldn’t do anything about it and I felt like I failed him, like I let him down.
It still might have gone the same way no matter what preparations I would have made, the thing is, I would have felt better about it personally. It would have just been something J couldn’t do and I would have been OK with that, but when he falters because I didn’t prepare him enough, I feel like a failure. Although it may have been something I have zero control over, when I don’t prep well, I feel like it’s completely my fault.
When I do this to myself my husband tells me “nobody likes a Monday morning quarterback”, it’s his cheeky way of telling me it’s over, it happened, just do better next time. And he’s right, I can spend so much time beating myself up, listing my mistakes, that I miss the fact that we tried! We tried to get J together with his buddies, so what if it didn’t go perfectly, we took him out.
He made a mistake grabbing the kid, but everyone is OK and it was an opportunity for him to learn from that mistake. All kids make mistakes and so do parents. Things won’t always run smooth, it’s what we do afterwards that defines us. It was a learning moment, for both of us, as parenting a child living with Autism tends to be. A moment to see our mistakes, deal with the consequences, forgive ourselves and hopefully do better next time.
J had this project over spring break that was clearly to get us parents out of the house and more engaged with our kids. I never mind assignments like this, anymore, because it’s something I kind of assign to myself. It’s not always easy to go out with J but I always feel better after I brave the unknown and conquer. There was a time during my son’s diagnosis when I did not want to leave the house. It was right around the time when his tantrums were becoming out of control, around nine years old. He was no longer small enough for society to disregard and he wasn’t obviously a special needs kid since his physical development was above percentile. Which meant I got a lot of dirty looks and judging eye rolls from strangers who all too quickly summed us up as a young mother and her ill-behaved brat. I felt so much pressure and stress every time we walked out the house. What if something set him off? What if I couldn’t control him? What if he hurt himself or others, or me?
After several very intense, exhausting tantrums in public, I was done. I imagined people thinking “why doesn’t she just keep him home?” So I did. I did all my errands during the day while J was at school so I wouldn’t have to venture out with him. I figured this was just the way my life was going to have to be now. Luckily I was working part-time when all this started happening so I had some weekdays off to take care of everything without having to drag J along with me. Although life was less stressful for me I realized his tantrums were becoming worse. I was now having difficulties at family gatherings and little things like neighborhood walks. He began to show signs of his now infamous sensory trigger, young kids and their loud high pitched yells.
I hated the path we were going down, he was only nine, I couldn’t really keep him inside forever, he wasn’t Bruce Wayne living in a mansion with all he needed and I couldn’t afford an Alfred to look after him. I wasn’t doing him any favors. He had to learn how to function in society. What would he do as a an adult when he needed to eat, or go to work, or visit a friend? I had to give him these skills no matter how terrifying the task seemed.
I went through a long process to get to the place we are currently at and although it is not perfect , we still have some difficulties, I have the tools to handle most situations. It’s what I imagine being on the bomb squad must be like, your still terrified that this explosive device will go off and obliterate you and everything in a 10 mile radius but the knowledge of how to handle it gives the feeling of control that allows for the confidence to finish the job successfully. Once I knew the triggers that set off J, I knew how to strategize for them. My confidence and preparedness not only calmed me but it made J less anxious as well. He could see I was going to work with him, we were going to get through this together as a team. I understood he needed my help and that was a comforting thing for him.
Anytime we go into “uncharted territory” this is how I prepare:
I explain to J simply WHERE we are going, WHAT we will be doing, WHO will be there, and WHEN we are coming home, if necessary and time allows, I will write it out for him on a dry erase board the night before and add it to his calendar ahead of time.
Noise cancelling headphones that attach to his iPad, fully charged and loaded up with all his favorite apps, songs, and videos so he can block out sounds that cause him distress.
A good night sleep so he has the energy to handle his sensory challenges better.
Back up tech like an iPod or cell phone with some songs or games on it and extra batteries for his headphones.
Chewing gum. In the past I would also bring clay dough, or Theraputty to help relax him. Theraputty Link
Keep the sugar intake down and give him lots of water.
Research the place for my own knowledge where it is, what it looks like, what we can expect.
Know and respect his limits, if it wasn’t part of the original plan don’t push it.
Ignore judgmental people, easier said than done but self explanatory
When I can do all these things J usually keeps calm and even enjoys himself most of the time. Planning is a big part of our lives as you may have noticed from previous blogs. A little planning goes a long way for J and for my confidence as well. What are some strategies you have adapted to help with your special needs child’s triggers? If you have any questions or just want to share your success stories on getting outside with Autism please comment below.
Today was J’s first day back to school and although I always hope for the best I always prepare for the worst. J has a hard time with transitions which can be pretty typical for kids on the spectrum. Usually, I can prepare him with schedules and notes on the calendar, but when it’s something he dreads like school, the prep just brings on anxiety and prolongs the behavior. He started last night.
As soon as I said to him “J, it’s time to get ready for bed”, his happy mood quickly became the foreboding rumble of thunder that is heard before a thunder-storm. To the untrained ear, they would just be sounds and grunts but I know what those exact sounds mean, “I am not happy and you are about to incur my wrath!” I quickly felt my blood pressure elevate and my heartbeat quicken, “fight or flight” kicks in on a hair-trigger, but I took several deep breaths and did my best to remain calm, “if I lose it so does he”, I thought to myself. J began imitating me inhaling and exhaling, which made me laugh and reminded me how much I love this kid and how special he can be.
With my mind a little clearer I focused on redirection, reminding J of his “stars”. Since J has such a difficult time going places or doing things that challenge his sensory comfort zone, I came up with a Positive Reinforcement Plan(PRP). He wasn’t a big fan of stickers until I found these gold stars. They meant something to him and he wanted to earn them, especially since earning a specified amount resulted in a prize of his choosing. This method of positive reinforcement was a huge help when J returned to school after home instruction and to this day it still keeps him motivated. It also keeps his aggressive behavior down. He knows if he acts out at school or on the bus it will affect his star for the day and take him longer to earn his prize.
I call this method “The Star Student”. Like the five points of a star there are five characteristics of a “Star Student” and to earn a star sticker, J has to embody them in some way, breaking a rule like yelling or hitting will make him lose his star for the day. Although he gave me a hard time this morning and complained up until the moment he got on the bus, he redeemed himself by being a “Star Student”, so he received his star for the day.
The behavior I saw last night and this morning had to have consequences or else I’m sure I’d see them again. So his TV time before bedtime was lessened, and it seemed that he understood why. I gently explained to him that he can not yell and scream at mommy in the morning, and if he does a better job tomorrow he will get his normal TV time back tomorrow night. He took his punishment like a big boy and went right to sleep, ahhh, is there anything better than when you get them down on time.
Here’s what I do to keep Jace motivated with his PRP:
Identify an inexpensive but highly sought after motivator for your child, this shouldn’t cost much more than $5-$20, depending on your child’s level of maturity and your budget. The cheaper the better as this will be a weekly prize. You can also do a daily reward that is either an activity or something
small as well to promote daily good behavior. For example- J works daily for TV time and a cup of ice cream when he gets home from school
Autism or not boys need structure and discipline, a boy with Autism needs it even more. It’s hard to be a drill sergeant mom sometimes, especially when your tired and all you want to do is cuddle them up, hopefully, he’ll thank me for it someday.
Well it’s Easter Sunday and I thought for sure J would sleep in today. We we’re up late last night watching HOP, but once again the unpredictable spice of life that is Autism has awaken him at 4:30 AM. He woke up yelling and screaming, I figured he must have had a bad dream, maybe a bad cramp. Trying to reason with J when he is awake is its own task, add the delirium of being half asleep and it’s a whole other beast. I brought him a glass of water along with my “A game” of patience and went to investigate.
Apparently his anxiety about leaving his iPad charger at grandma and grandpa’s house woke him up. I know he gets anxious about family gatherings so it made perfect sense. We have a big, vociferous family, so the escape of having his iPad and headphones when he needs a break is a great comfort to him. I had the bright idea to teach J about being more responsible with his belongings. So instead of going back out later in the evening to retrieve it, my parents live in the same town, I told him I would get it in the morning and enforced it with”remember your things next time”.
At 4:30 AM he made it very clear this was the source of his anxiety. He needed me to reassure him that I would get the wire several times before his emotions finally simmered. I was tempted to go out right then and there but I chose to teach him about responsibility and there was no backing out now. After about an hour of moaning and groaning he finally went back to sleep, and so did Big J.
I never rediscovered the comfort of my bed so I figured I’d make the best of it and wish you all a Happy Easter or Passover, which ever you celebrate. Hopefully the Easter bunny leaves me a pillow for a nap since I’ve already given myself the lesson of learning when to pick my battles, especially when a good night’s sleep is at stake.
Getting J to sleep on time did not become difficult until around eleven years old. Once those puberty hormones arrived so did his independence. Watching a child with Autism and limited verbal skills express independence is like watching fireworks, it’s so exciting to watch, you don’t care if the embers are falling right on your head. So I allowed the bedtime routine to lapse a bit. Then the behavior came. In the morning J was so grouchy and uncooperative and just generally gave me the business. Yes just how every parent wants to start their day with a tween screaming in your face. We were still doing home school at this time and I noticed he was much less attentive and his aggression and outburst were far more frequent throughout the day. Who does their best when exhausted? I know I’m more pleasant and less irritable after a good nights sleep. Now imagine if you didn’t have the verbal skills to express this feeling, that was J.
We had to get back to a routine. So when eight o’ clock rolled around I was quick to put him to bed, but he wouldn’t go to sleep he would turn on his tv, or play with his toys, or read his books. The more stern I became about J going to sleep the more aggressive he became. I didn’t feel he should be rewarded for going to bed on time, that’s just something he should do for his own benefit. So a rewards system was not something I wanted to put into play. I started to look at everything leading up to bedtime and I realized some key factors that were sabotaging the whole bedtime routine:
Dinner should be at least 3 hours before bedtime – I wasn’t so great about getting dinner ready by five o’ clock especially when I was homeschooling. We finished up lessons around four so I was usually trying to relax from the long day. I realized I would much rather relax with my hubby once J was asleep. I made it my mission to have dinner ready no later than six o’ clock. If I made dinner too late I didn’t punish J by forcing him to sleep only an hour after dinner. I gave him his three hours to digest and even if he went down at ten or eleven it was without a battle.
Exercise – The nights that were most difficult were days that we were stuck in the house. J was so restless at bedtime. I made a conscious effort to get J outside everyday that the weather was not dangerous. Even if we just went out for a walk, I made sure he was outside for at least sixty minutes and at least four days a week.
Create a routine – J hated the words ” it’s time to get ready for bed”, just those words alone could send him into a full-blown meltdown. I started to understand why, there was nothing to look forward to except the inevitable moment when he would get in trouble for not going to sleep and his mommy would be mad and annoyed with him. Who’s looking forward to that? So I created a routine, first we brush our teeth together, then we wash our faces, and then it’s shower time for J. After that its pajama time and two book story time, one for us to read together and one that I read to J. I even wrote this out on a board for him so he could have a visual until the routine was second nature like it is now. Lastly, hugs and kisses, lights turn down and a reassuring message of “I’ll see you in the morning my love.”
Create rules for bedtime – Just because I created this wonderful routine doesn’t mean it worked straight away. J would still get out of bed or on uncooperative nights, kick and bang on the walls while he wailed and screamed sounds of unfairness. After calming my temper, letting go of my worry that the neighbors could hear J carrying on, and trying to understand why he would do this after such a smooth bedtime routine, I realized he needed rules. He didn’t know what he couldn’t do until it was too late and he was being punished for it. So I wrote and laminated a sheet of “Bedtime Rules” and tacked it up, next to his bedtime schedule in his room. We went over every rule together and I made the rules very simple with as few words as possible. One rule was “no yelling and screaming at bedtime” and once he knew this was a rule he understood he could be punished for it.
Create fair consequences for breaking the bedtime rules – The TV was the big enforcer for us. J always wanted it on, so if any rules were broken the TV went off. I always gave him a warning before that happened and made sure he heard me say, “this is your last warning”, even if it was his first and only. That let him know I meant business. If I had to, I followed through, those nights were rough, but once he realized I would even go so far as to physically remove the TV from his room he got with the program. I was wise to create limitations on bedtime TV; one movie or two shows and then bedtime. If J had it his way he would stay up all night watching movie after movie. He was not allowed the remote, we would pick what he wanted to watch together and I would allow him his remote back in the morning, after six.
Be clear – With J I had to be direct and clear with every expectation I had for him at bedtime, any uncertainty, weakness or unnecessary chatter, and he saw his opportunity to knock the structure down. It all had to be very matter of fact. If bedtime was at eight thirty and I knew it was going to be later for some reason, I would let him know, ” we ate a little later tonight so bedtime will be at nine o’ clock” this way he knew I was still the authority on bedtime. If he gave me sass about handing over the remote I reminded him he could get it back in the morning after six o’ clock and reminded him about the rules. I had to specify the time, one morning he actually came in my room at four o’ clock while my husband was getting ready for work screaming “morning, remote please!” As long as I stayed firm and stuck to the terms I laid out for him he was great, I was amazed at how well he adapted to the routine after a few days, even more so with in a few weeks.
I had my evenings to myself again. It is hard work to establish a routine but well worth it. I remember when it first started working and J would be asleep by nine thirty, me and Big J would look at each other like what do we do now? We figured something out.
*TIP- At one Point J kept popping out of bed with all kind of excuses, he needed to use the bathroom when he didn’t, he wanted water when he already had some. I borrowed this tip from ” The Supper Nanny”. Supper Nanny Tip for Keeping Kids In Bed. His first time out of bed, I would lead him back by the hand, remind him it’s bedtime, tuck him back in and give him hugs and kisses again. The second time I would remind him it’s bedtime again but a little firmer, tuck him back in, hugs and kisses again. By the third time and then on, no verbal communication just tuck back in. J used to get so angry once he knew what I was doing, this too became a routine. He would flip out in the beginning but once he realized his interactions with mom were done for the day and it was indeed bedtime, he actually gave up and stayed in bed. After difficult nights I made it my business to spend more quality time with J during the day so I wouldn’t feel guilty when he pulled this at night. Knowing he got enough of my time during the day made me feel confident enough to enforce this.
Even now at thirteen we still follow the bedtime routine and as long as we do, bedtime is successful and J is much more cooperative throughout the day at school and at home. I hope this post helps anyone out there having trouble getting their little ones to sleep let me know how it goes or if you have any questions.
I had my son early in life and although I had a natural knack for connecting with children, I just did not have the tools to deal with what lie ahead. Autism challenged every approach to parenting I thought I would have as a tool. This became very apparent around the time J turned three.
I couldn’t reason with J when he was having a meltdown nor intimidate him to stop with sternness or the threat of a spanking. It was so frustrating, watching my boy scream and cry until blood vessels broke under his skin, giving the appearance of red freckles. I would try everything, or at least what seemed like everything to me, holding him, soothing him, restraining him with a bear hug in the hopes it would tire him out and keep him from hurting himself, singing to him, bribing him and a ton of other things that were temporary fixes. I had never dealt with a child I couldn’t calm. It broke my heart, I felt pain that there was no comfort for, I felt helpless and overwhelmed and since I was alone with him most of the time I would dwell on it and crumble. I was not acquainted with feeling this powerless and my sadness quickly turned to frustration, resentment, and anger. How could my little boy want to cause me so much pain, worry and grief? I was only trying to do right by him, care for him, love him, guide him, and he was making my life so difficult. Why did this happen to me, what did I ever do to deserve this? I didn’t want to be a parent that spanked but it seemed he was leaving me no choice. Well, spankings did not work either, in fact they made things drastically worse.
Here’s What I Did Wrong- Beside spanking, yelling and losing my temper, I made it all about me, what I was feeling, how this was all affecting me, how my life wasn’t what I wanted it to be. I was still young minded, selfish and self involved. I had not yet learned the sacrifice and selflessness that unconditional love demands. My son had no one else but me to help him and I was falling apart right before his eyes. I wasted too much time dwelling on my situation, that I missed opportunities to gain control of things. I let my frustration and anger create hopelessness and distance between us. That’s not to say I didn’t love him, I smothered him with love, but there was no connection, not like there is now. Yes what I was going through was not fair, and it was a lot to process at twenty-two along with being a new parent and all the other things going on in my life, a failing relationship with J’s father, moving back in with my parents, and a blossoming career put on hold.
What I Would Do Different-
The first thing I would tell young JRED to do, stop dwelling, at least while she is in front of J. It’s very counter productive at a time when our attention should be on teaching J through play. We should be observing and trying to understand him, what sets him off, how to avoid or limit this. Children believe we are super heroes and at some point in life they may realize we are not, but hopefully that’s at a point in their lives where they are confident and educated enough to understand why. We have to give them the feeling that life is safe and stable and like we can keep them protected even if it is an illusion we are creating for them. That illusion is a gift, almost like taking them to Disney World. You know it’s not realistic but you want them to believe in magic, to be a child. The reality of life will naturally find them, no need to bombard their childhood with adult concerns they do not have the capacity to understand.
I would tell her to focus on letter sounds and words with J. Simplify the reading material so that he can mimic sounds and words. Work with flash cards and teach through play, tickling, and games. Don’t yell just correct patiently, simply, without visible frustration. Show pride painted across our face when he does good. Minimize the reaction when he does wrong.
I would tell her to deal with her feelings in a healthy manner, away from J. She is in mourning, mourning the loss of an ideal that she created in her mind long before J was even born. Those feelings definitely need to be addressed to make sense of them or at least get them under control.
I would tell her to talk to people she trusted after J was asleep or away from the conversation. I would tell her to seek out professionals and other parents who have gone through this that can shed some light and much needed advice.
I would tell her to exercise and make time for herself to clear her mind even if it was just an hour a day to blow off some steam so it wouldn’t be taken out on J.
I would tell her to write, keep a journal and write anything she felt, poems, diary entries, songs, drawings, anything that helped her process her feelings to the point of some clarity.
I would tell her to have faith, and be strong, and to pray. To see this as an opportunity, to find the purpose in the detour life put her on, and if she can’t find the purpose, create one.
I would tell her to cherish this time, Autism or not J will never be this small again. Enjoy watching him discover the world even if it’s not at a pace society expects a child his age to be, go with it, follow his lead and be a witness to his life.
Lastly I would tell her to let go of what she thinks her life should look like to please others or because of what she was taught. I would tell her to let go of the shame of returning to her parents house for help and appreciate the fact that she even has that option. I would tell her not to worry about being a single mom for fear of what others would think of her or her child, a happy single mother is healthier and stronger than a miserable married one. I would tell her not to worry about her career and money, they are not going anywhere but J’s childhood is. I would tell her not to worry about making everyone happy. I would tell her that she can not control others and how they feel only herself, that she is the only person responsible for her happiness, not a man, nor society.
Then I would hug her hard and tell her she will get through this, people have gone through worse.
Like schedules and routine, organization keeps stress down and my mind clear. Having a special needs child and being organized seems next to impossible, but it makes life much easier. Not just structurally, but mentally. It is said that our homes and spaces reflect our minds, and one look in my downstairs closet would show you there’s much I put away and forget about. That’s why it is so important to set aside time to organize my home and my mind. This became quite clear during home school. Thankfully To-Do-List made life much more Do-Able.
Once dinner was done and J was down for the count, I was so tired that I wouldn’t even want to talk anymore. I spent the day talking slow which is challenging for me as I speak a mile a minute. Much energy was also spent on being extremely patient, repeating words again and again, and exaggerating enunciation that by nine o’ clock I was sick of my own voice. Not to mention all the other things I had to do once home school hours ended, I was spent. I would have headaches and my voice would be so hoarse no amount of tea and honey would soothe it. It seemed like the only down time was bedtime. I would tell my husband, Big J, “just talk, you do the talking, tell me all about your day” which was surprising to him since getting me to shut up is usually the challenge. Midway through his recollection of the day, my exhaustion would conquer me and I’d knock out.
I realized I had to do something to get ahead of this rapid pace I was setting for myself during the day. I worked in midtown Manhattan for years before turning my total attention to J, so I was accustomed to a fast pace, busy life, but the work day ended at some point. I left the office and it’s troubles behind until the next day. I had to come up with some life hacks for home schooling. I had to get organized. So I asked my mom to take J for the day. I spent the day balancing my life by creating realistic goals and limits on work so that I could spend time off from being J’s teacher and more time being mom, wife, and me.
I sat down with a pen, and paper and wrote out two list. One was titled “Things to do for Me”. The second list was ” Things to do for J”. Writing down all the things looming in my mind made it much less daunting. The panicked feeling of “oh! I forgot all about that” was gone, because each task was accounted for on my trusty list. It may sound silly and simple but they help and I always feel such a sense of accomplishment when I can cross something off the list “and sigh of relief, its done”. I could also see options for what could be incorporated into the home school schedule, like my workout during PE, visiting my family as a social activity, dropping off donations to the church, recycling, paying and mailing out bills could all be great living skills opportunities for J. I just had to get creative in my thinking and brave in my planning. Outings were and sometimes still can be a challenge. I’ll talk more about how I handled that in a later post.
So with my mind mentally organized I didn’t feel so overwhelmed, I knew I was going to have time to watch a movie with Big J after little J went to sleep because I didn’t have to run to the post office or workout, or grocery shop. I already did that during the day with J. I even had time put aside to write and do research about Autism after we ate dinner. I asked Big J to give me an hour of alone time while he spent some quality “guy time” with little J. Yes! I even learned how to ask for help and how to delegate. I didn’t need to do it all on my own as I had myself believe.
I typed up about two weeks worth of lesson plans. I got everything ready for them like supplies, worksheets, bookmarked websites, and anything that I would normally find myself scrambling to do with the 15 minute breaks I had between each lesson. Our breaks were short to keep J on task, any longer and he would lose interest, get into mischief, and be much more difficult to refocus. The faster I could move through subjects the better. I could now sit down next to him during a break and have a cook of tea and recover before the next lesson. This planning made me feel empowered and inspired, even if I was only cutting up eggs for the Green Eggs and Ham counting game we were going to play in math.
I imagine this is what most teachers do daily, prepare as much as possible ahead of time. I never studied to be a teacher so my teaching skills stemmed from playing school when I was a child and being a student myself. I always did like being the teacher when we played school, but we were not “playing school” anymore, this was J’s future and this was hard, challenging work. I regard good teachers as great strategist now.
Being organized helped me add more elements of fun to the day. I was more care free and able to be in the moment because I wasn’t worried about preparing for the next moment, it was already prepared for. There is so much in life that can not be anticipated, but with a good amount of organization and planning the unexpected becomes manageable.
Feeling overwhelmed comes with the territory of raising a special needs child and children in general. If you feel like you are drowning or just can’t seem to get it all done try making list to gain mental organization. Start with the time sensitive priorities at the top. Understand that you may not check everything off in one day and allow yourself enough time to properly tend to each. I like to give myself due dates especially for bills or tasks that have deadlines. If this feels like it adds too much pressure don’t write deadlines just what needs to get done. See what you can ask others to help out with. Then execute! Make it your mission to get at least two things or even one done a day. Be realistic about how much time each task will take to do properly and then make that time. Before you know it that list will get smaller and smaller. I hope this helps, please let me know if writing lists helps you out or if you have any questions please don’t hesitate to comment.