World Mental Health day is October 10th! I love that we have a day to think about our most important organ, our minds. Zumba decided to dedicate a whole month to this and in regards to what Zumba and Zumba instructors do for the world’s mental health, a month seems more fitting. As a parent of a child living with the label of Autism, Mental Health is a huge interest of mine.
Yesterday kicked off the first day of the “Wisdom of Trauma” movie release and 7 day event of talks and content discussing the unseen epidemic of Trauma in our society. I often talk about the connection I have seen between trauma and Autism in my own life. The generational impacts of trauma, that can dysregulate the body/mind connection have been my focus of recovery for Jace and myself. As I am watching the movie, I open a page to write, so many emotions and connections, that I just have to put them somewhere. As I type this through tears of relief, knowing that I am not alone, that we are all alone, together, that life is pain and the beauty of healing, I am empowered by the ability to share this bc, we don’t have to be alone. I hope this post brings you relief and comfort from your traumas as well. And when all else fails get to a Zumba class, preferably mine lol, and dance it out! Give your brain a break and give it a beat!
Some of my favorite points Dr. Gabor Mate makes:
2 basic human needs: Attachment and Authenticity; how the need to attach out of a sense of survival as an infant and child shapes our relationship with our authentic selves.
2. Generational Trauma: It’s not your parents fault! Letting go of blame can seem like an impossible task. It goes back, it happened to them and their parents and so on. Generational trauma dissects us into groups experiencing similar traumas ie; genocide, slavery, economic, societal, and racial expectations. For example, when my ancestors moved to America, they had societal expectations to contend with as well as racial expectations put upon them, not to mention what they experienced in their homelands. This shaped the way my ancestors raised their children, and so on until it came to me and even I was raised believing that I had to prove these stereotypes wrong, focusing far too much energy on past ideals rather than my own natural ideals.
3. Addiction- Gabor sees addiction as a response to trauma, treat the trauma not the addiction. No longer are addictions seen solely as drug or alcohol use, addiction is anything that takes us away from our loved ones, harms our health, or suppresses our authentic self. It is a response to the void left by traumatic experiences and a way to self soothe our trauma. It can be anything from a syringe to an iPhone or a pair of designer shoes or even unnecessary late nights at the office. These are considered escapist behaviors in which we engage in behaviors that allow the conditioned mind to get out of the way for a moment of temporary joy, inevitably leaving us dissatisfied and craving the next fix.
4. Perception of reality: Often times, we don’t respond to what happens we respond to our perception of what happens. We are not responding to the present moment, we are responding to the past, a past trauma, and often we are alone in this perspective which creates anger, confusion, and buries the truth and facts.
If this content interest you please click the link below to learn more about “The Wisdom of Trauma” movie and access talks from the worlds leading experts in this field of mental medicine. I do not have any affiliates with this organization nor am I being paid for this, I am just a huge fan of Dr. Gabor Mate and his work.
We all want to be loved, adults and children a like. And when we are loved, when our needs are met, we feel supported, confident, and empowered and all is right in the world. So how does this help when parenting? It reminds us to parent with love first, and responsibility second. Once we are fluent with the way our children respond to love, once we are in tuned with their needs and motivators, we can gain their trust and in turn guide them with cooperation, respect and love to healthy development.
I’m so excited to share one of my favorite visual tools that I use to remind myself of this focus. A simple chart I came across while feeling frustrated in another relationship of importance, my marriage. I found myself feeling resentful, exhausted, over entitled, and unfulfilled. I was in a rut and I put myself there by holding my most loved ones to expectations unbeknownst to them. My expectations. The expectation that they will love me as I expect them too and if they don’t then I will self destruct and hold them all responsible. That’s crazy, right? But all to common, maybe not so dramatic but common. And we deal with it, we live life banging our heads against a padded wall going maybe someday they’ll get it, if I beat it in their heads enough, maybe they will care about the things I care about at my intensity. Why would I really want that anyway? I love these people for who they are and what makes them unique to my heart.
What if instead we empathized, one of my favorite words when it comes to parenting. What makes my kiddo happy, what puts a smile on his face, what lifts his heart? Not mine, not what makes me feel safe and cozy and cared for but from his perspective.
I am a physical lover, I love hugs and cuddles, and spooning, and nuzzles. And although I may enjoy that and maybe my two year old does also but my teen on the spectrum not so much. Physical contact makes him visibly uncomfortable. That’s not to say he doesn’t return it, but that’s because he knows its my love language, it makes my heart rise when he hugs me on his own, my smile cracks from ear to ear when he kisses me on his own, and he knows it, he’s so smart.
So how do you figure out how your child loves, when they have challenges communicating simple daily needs, or any words at all? Observe and learn. try some different approaches. The chart below is printed out over my computer because that is the place I tend to get most frustrated with my children because I am not trying to focus on them but myself.
This moms site has some great printbles to get you started for free, after a simple email subscription, and I do suggest you print it out and put it somewhere your kids seem to get your goat most, maybe the bathroom, or kitchen. The visual concrete reference will help to create this process of rethinking your approach when parenting and hopefully ease frustration. I did not invent the Five Languages of love, no, just lucky enough to stumble upon Dr. Gary Chapman’s ideas in my research to better my communication and understanding skills in my nuclear family.
True love, unconditional love, is not easy, it does not just happen. You have to do the work and commit to change no matter how uncomfortable it may feel in the beginning. You have to make the effort to see another way of life, of love. As with all new habits, it has to be habitual for results, but when we falter we have to be kind enough to forgive ourselves and start over. Good luck guys, please comment below and share if this chart helped you out or even if it didn’t.
While I was home schooling J, I used his love for tech to my advantage. Unfortunately there is a lot of unproductive technology out there which can lead to stimming. So I tried a lot of different apps before finding some great ones that keep him focused and learning, and having fun. Here are 5 Apps I used to turn my son’s iPad into a learning tool.
1. Pictello– at $19.99 it’s the priciest app on this list but worth it. J has communication challenges and this app supports sentence construction. It also allows him to create a social story of his own with pictures, video, text, and sound.
2. Shelby’s Quest– $4.99. This app focuses on fine motor and visual perceptive skills. While I was homeschooling I used this during our Occupational Therapy sessions with great success.
3. Endless Alphabet, Reader, Numbers, and Wordplay– Free. Originator Inc. is the team behind these great apps. They each focus on the title indication, they teach letters sounds and words, reading skills and sentence structure, counting and basic addition, and spelling patterns and phonograms. The app itself is free however the packs to add additional words and content start at $4.99 a pack. I suggest trying the free trial first before committing to bundle packs. J loves this whole series so much I’ve even purchased him new packs as positive reinforcement as a reward for good behavior.
4. Albert– $0.99. This app is so much fun and very challenging, think “Dumb Ways to Die” but for kids. It utilizes all tools of the iPad and even works on iPhone. It also teaches sequence as you are following Albert through out his day waking him up, helping him bathe and get dressed as well as other daily tasks like driving and grocery shopping. These mini games are challenging and as with all the apps I’ve listed I suggest playing it with your child, J and I take turns on Albert and even I don’t pass the challenge sometimes which is a great opportunity to teach J about what to do when we lose at a game.
5. Dr. Seuss Books– Oceanhouse Media brings the beloved Dr. Seuss’ books to life. An interactive book, your child won’t just read but also be able to play and record. J and I like to go page for page while we record the story. The classic “Dr. Seuss’ ABC’s” is a free sample so you may want to start there to see if your child enjoys this format before purchasing other titles. Great for kids who can get a little rough with actual books. Titles start at $2.99, they tend to go on sale every so often, usually around Dr. Seuss’ birthday (March), that’s usually when I stock up.
These are just a few apps we’ve come to know and love in our house. They serve as a great opportunity for J and I to practice appropriate play skills such as taking turns and encouragement. They are also great while on the go as they keep him entertained and learning. I’ll add some more that we use soon. Let me know if you’ve had any success with these apps as well or any you would like me to include in the next list. 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.
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.
Once I had decided to take the plunge and home school J there were lots of things I needed to do logistics wise.
Letter of Intent – First I had to get in touch with my district’s superintendent and notify him of my intentions to home school. This is done with a letter of intent. This will keep you out of any trouble intimidating administrators may say you are about to be in for your decision to home school. I even had one administrator tell me that what I was doing was illegal and I could go to jail for this! Imagine that? Someone telling you that you can go to jail for trying to help your child especially when they have no other options or solutions to recommend. As long as you file this letter with the district before July 1, your good. I filed in October because I was not planning to home school, it just became the most logical option after my son woke up one day and refused to return to school. He physically planted himself in his closet in his room and refused to leave it for fear of being forced to return to school. We tried everything, coaxing, remaining calm, yelling, screaming, physical force, punishment. It got to the point that my son would even refuse to use the bathroom for fear of being forced out the house. My child is not small so it wasn’t like I could pick him up and throw him over my shoulder. Even my husband and father couldn’t physically force him nor did we want to. It was quite a sight. He would go limp so we couldn’t grab him, drop to the floor inside and outside and kick and scream and cry “no school, stay with mommy”. He was very verbally limited so to hear him clearly state no school was concerning. Why no school? What was happening that he couldn’t communicate to me that would make him behave this way? I had to give him words and that was my first goal for his IHIP. Here is a link to what a letter of intent looks like: letter of Intent
Here’s what my letter looked like, names and addresses have been changed for privacy purposes:
27 Home School Lane
Brave Lady, NY
October 22, 2012
Mr. or Dr. (in my case)Superintendent
P.O. Box 000
To Dr. So and So,
I am sending this letter of intent as required of Section 100.10 of the Regulations of the New York State Commissioner of Education.
I intend to home school my son, J who will be entering grade 4 for the 2012- 2013 school year. J has a diagnosis of Autism and was previously enrolled in special education classes at Such and Such school. Our curriculum will consist of ; Speech, Occupational Therapy, Social and Developmental Skills, Physical Education, Health, English, Math, Geography, Social Studies, Science, American History, Independent Living Skills, Art and Music.
Then there are the meetings the district calls to try to talk you back to sanity, because honestly no parent of a special needs child has any idea what an undertaking this is until you’re in the deep end of it all. They offered alternatives but none seemed to fit the bill for what my son needed at this point in his education and there was this immutable voice inside me saying he needs this, he needs you, he needs to be home. I would not suggest that anyone with limiting health conditions start this but if you do keep in mind to take care of yourself as best as you can. Organization and schedule/routine go a long way as I will discuss in later post.
IHIP– The unfortunate thing most people don’t know about special education is that it’s all lumped together, regardless of the child’s diagnosis or age. Most public programs run from the age of 5-21 years old which is something I always have a problem with. This would never happen in a typical school so why is it ok in a special needs program when appropriate peer interaction is a social skill most children with an IEP would need? For those of you new to the special needs community an IEP stands for Individualized Educational Plan. Every student in special education has one. So instead of having programs tailored to specific disabilities and the common concerns associated with these disabilities these IEPs are ideally tailor-made to address every educational concern for a special needs student. When I decided to home school my son I had to come up with an IHIP which stands for Individualized Home Instruction Plan. Lucky for me I was always very hands on with J’s IEP construction and reviews so I was familiar with the format. I also found a sample on the web that gave me a great place to start.
Here’s a link to the site in case your thinking of making an IHIP: Home School NYC
This sample really got me inspired and opened my mind to the possibilities of academics, something that was seriously lacking from my 10 year old’s scholastic career. I was so thankful to find it because it was not suggested to me. I did not receive much help from my district in regards to making this an easy or informed decision. I really had to research everything on my own, thank God for the internet! Most districts would not be happy about a parent home schooling their child Special Ed. or General. So it’s not something that’s encouraged or supported more than the requirements by law. It took me about a month of evaluating my son’s skills and learning exactly where he was educationally before I could finalize his IHIP. I’ve changed the names and personal info for privacy reasons but the rest was what I hoped to accomplish. Here’s what our IHIP looked like:
INDIVIDUAL HOME INSTRUCTION PLAN
NAME OF CHILD:J
GRADE LEVEL: 4
TODAY’S DATE: December 20, 2012
SCHOOL YEAR: 2012-2013
EXPECTANT DATES FOR QUARTERLY REPORTS:
1/30/2013, 4/15/2013, 6/30/2013
J will be using various methods/tools for fourth grade instruction in all the subjects specified in Section 100.10 of the Regulations of the Commissioner of Education. The corresponding subtopics may include and are not limited to:
J will learn, to read and write numbers, sequence, odd and even, geometry via shape identification, measuring ,time telling, chart and timeline making and reading. Addition, subtraction, fractions, quantity and value, grouping, sorting and basic money skills. We will also lay the ground work for multiplication and division by skip counting and fractions.
The English Language
(Reading, Writing, Spelling, phonics, grammar, vocabulary)
J will learn how to write size appropriate, proper use of capital and lower case letters, identifying vowels, increase his comprehension and vocabulary, enunciate and identify sounds by learning phonics, identify verbs and nouns, adjectives and pronouns, possessive nouns, creating short stories, reading different forms of literature, such as poems, short stories, chapter books, fiction and non fiction books.
(U.S. History, Geography) history of the American flag, the star-spangled banner, the pledge of allegiance, native Americans lifestyle, settler lifestyle, the history of bridges and famous New York state bridges. This will also be accompanied with trips to various museums such as the museum of natural history, the metropolitan museum of art, the museum of moving motion, the statue of liberty, the Brooklyn bridge, the Empire state building, and the Dimenna Children’s Museum of History. Geography will be taught via an introduction to map reading in regards to our local, national and international regions. World cultures, Regions of the world, Continents, Earth’s resources, Climatic regions of the world, and Using a globe.
Environment of the local region, Biological organization, Classification systems, The insect world, The reptilian world, Plants and animals of the past, Structure of plants, Seeds, Ecosystems, Balance of nature, Human body, Weather’s influences, Weather instruments, Climate, Cause of seasons, Oceans, Air and water pollution, Magnets and electricity, Light and color, Solar system and the universe, Living in space, Scientific method and scientific inquiry
Personal and mental hygiene, Dental health, The body and its functions, Skeletal and muscular systems, Care and proper use of the body, Principles of digestion, Basic food groups, Good nutrition habits, Safety
Music/Visual Arts/Phys. Ed.
Wide exposure to all forms of music, classification and basic history of music, musical scales, basic Piano keyboard. Arts and crafts, trips to art museums as stated above in Social Studies. Structured dance lessons (latin, modern movement, traditional basics).
Structured play, ( bike riding, running, Calisthenics, seasonal sports, indoor and outdoor play) 3 hours per week.
Related Services/Speech, OT
J will also receive necessary services such as Speech and OT as provided by the school district of (our town).
Instruction methods/tools may include and shall not be limited to: reference materials (atlas, dictionaries, globe, maps, encyclopedias, non-fiction books, videos, the internet), workbooks, worksheets, hands-on activities, experiments, projects, newspapers, magazines, frequent field trips, group activities, classic/contemporary literature, research, journal/narrative/essay/poetry writing, games, creative thinking, predicting/forecasting, gathering facts, written peer correspondence (pen pals), music CDs, CD ROMs, piano keyboard, art supplies (clay, paint, crayons, pencils, sketch pads, felt, chalk, etc.), play, conversations, and real life.
Primary instruction for J will be provided by JRED, his mother. Supplemental instruction will be provided by others, as necessary.
Once you submit one of these your district will take you much more seriously, mine did and I started working closely with the director of pupil services who was so much more helpful and knowledgeable. I still work closely with her in all the planning for my son’s education. I always feel like she has his best interest at heart and really tries to work with us to troubleshoot any problems that may arise. We were really blessed when she came along.
So now that my Letter of Intent is filed with the superintendent’s office and my IHIP is also submitted to the pupil personnel office in my district, its time to form a curriculum. This is the fun part believe it or not, because this is when I actually start to form lesson plans and decide what J would be learning for the next three months. This is where I can get creative and really cultivate a learning experience just for him. You could plan ahead for the whole year but I liked having the freedom to adjust my lessons to how J would respond to the new material. Some things would require more time for comprehension before we could move on like addition and subtraction. That was a tough concept, it really worked best with tangible items like little counters or beads. He really likes when we use food like little goldfish crackers or cereal puffs. It really depends on what works best for your child. The key is to let them go at their pace and not to get frustrated when it differs greatly from your own. Here’s a site I found useful, they have a lot of great resources for home instruction if you have the funds to invest:
For math I liked the UNIFIX blocks because I could write the numbers on the side to reinforce the value. You can buy 100 of these for less than $15 on Discountschoolsupply.com. Here’s the link below if your interested.
One of the things I did when forming my son’s curriculum was writing up a list of goals I had for him. This gave me direction and a base to come back to when I felt as though we took a wrong turn some where. This is no small task. It took me a good couple of hours to sit down and really think about what I could do and what J could do. I had to be realistic but I also didn’t want to limit him, I wanted to challenge him and see what he was capable of. I laughed as I wrote that last sentence because of what did happen on several occasions when I was “pushing the limits” as you will read about in later post. I also kept my daily curriculum in tuned with the school and national calendar. I always tried to have our lessons coincide with what season we were in as well as corresponding holidays. I will go more into this in later post.
Well I hope that helps you get off to a good start if you are debating home instruction. Keep in mind home instruction is not just limited to a child not enrolled in a center based program. I still carry on some home school subjects at home to keep J busy, but we’ll talk more about that later. Any questions on home school, IHIPs, or curriculum please don’t hesitate to comment.
When I started this blog back in 2013 I had no idea how consuming home schooling would be. I definitely had no time to contribute to this blog the way I wanted to. So it’s been forever since my last post and I have so much to share. I can finally sit down and formulate all this great knowledge into something understandable for the world. J is back in a center based program. Home school was amazing but it kicked my butt mentally, spiritually, physically and financially. I learned so much about him, how he learns, how he communicates, and what the best approaches to his challenging behavior are. I learned even more about myself like what I was doing wrong, how creative I could be, and how strong of a person I really am.
If I had the resources and help, I might have considered homeschooling indefinitely. J learned so much when he was home the results were undeniable. His reading skills improved drastically, his independence soared, and he was beginning to look at the world with an inquisitive eye I had never really seen in him before. However the lines of mother and educator were blurred and there was never any time off. It was non stop and exhausting. I was losing myself in his world of Autism. I was neglecting my husband, family and friends. I let go of my goals and aspirations. I was neglecting myself on almost every level, I was existing for one sole purpose, J.
Most days this didn’t matter, I knew this was temporary, that I had a limited amount of time to help him and I had the rest of my life to help myself. Other days home school would consume me so much I would fall behind on everything else I was responsible for and then I would stress. And then the chest pains started. I would get dizzy often and wake up and go to sleep with headaches. I lived a very healthy lifestyle other than all the stress of home schooling, so my mind spiraled out imagining what was wrong with me. I started home schooling J in October of 2012 and by February 2013 I was diagnosed with Anxiety and Panic Attacks. My doctor said I was on the verge of having a stroke or a heart attack at the age of 31 if I continued living at this level of stress.
I wouldn’t be any good to anyone if this happened, so I made it my mission to find a program that would work with me, that would look at all I learned and apply it. In the coming weeks I will share stories from our home school experiment, ideas to help issues we tackled, and strategies tried and true. I will discuss further why returning to a center based program was better for J and myself. J is now 13 and as most parents of teenagers know, the rules have changed! I will discuss how we are managing the new hormones, the debate to medicate, social skills, and everything else that comes with pubescent territory. I look forward to sharing this pivotal part of my life with you and hope that it leaves you inspired and empowered or at least a little more positive.