autstanding

Some days are just…tough. I try very hard to remind myself how great we have it with my kiddos, our situation, and the love and amazing moments we have together. But then….some days I am only human and I just can not wrap my head around it all still.

For example:

WHY?????!!!!! My 5 year old woke up this morning sweet and snuggly and happy. You never know at this point though what kind of day you will be having. For him, it could go either way. Unfortunately, something was going on in his little noggin of his and he is not verbal in the sense of communicating what is in his head really. Words he has, sentences sure, paragraphs!!! ALL. SCRIPTED. Generally, we as a family, even my ASD/ADHD 7 year old, can figure out what my younger one is trying to say but today…nobody figured him out. He started off by removing his diaper before I could get his onesie on. I know I know….should be first priority! Usually it is. Last night however, my big boy broke out in a serious case of hives, cause still unknown, and our sitter had to phone us and send photos in which we rushed right home, of course. He is fine. Calamine lotion with a cotton ball on the itchy bits until the Benadryl kicked in. Then blissful and mainly restful sleep. Also, my husband is suffering this terrible cold we have all had. It is more annoying than anything, itchy cough at night, that sort of thing. He woke at 4am and I was up after that for a while. Point is….we Parents were tired! We did not sleep enough or well enough. We had a 7 year old in our bed which we love but he does talk a bit and move around.

Back to the point of the story, my 5 year old removed his nappy and emptied the poop stones on the floor. I had to get him redressed, this time with the onesie and the whole outfit!! Shirt, pants, etc. I begin cleaning his poop off or carpet with our amazing super powerful deep cleaning Bissel while my husband tries to get an hour sleep. I finish after about 15 minutes or so and bring the Bissel back through the kitchen on my way to clean it and empty it….put it away. I stop dead at the door as I see my 5 year old sitting on the counter on the other side of the sink and spraying the countertops with water!!!

So…literally, water was FLOWING over the countertops and down the cabinets. Waterfall. Picture it. He had been doing this for a few minutes at least!

I ditch putting the Bissel away and cleaning it out…and begin mopping up the water which of course, as water does, goes anywhere and everywhere it can find a way. The house we are in is old. It needs new grouting and sealing along the backsplash and between the cabinets. Dripping and trickling sounds are coming from behind my cabinets. Pulling out every single kitchen towel from under my sink, I just start throwing them all over the big pooled areas. Instantly, they are soaked through because there is that much water! As I get the water to stop flowing over and contain it a bit, I go see what my little monkey is up to while I am cleaning up his current mess.

He has undressed and is totally naked running around the living room I just cleaned up. Knowing there will surely be more poop to come, I leave the kitchen, towel him off and re-dress him. I go back to the kitchen. I keep cleaning. The kids go outside so I install the new lock for the pantry door to keep my 5 year old out. (That’s another story).

After than, I decide I have a moment to have coffee finally and make it. This still takes several attempts as I am interrupted by both boys constantly.

I wish I could say I had a calm down moment of peace but no. Not even 5 minutes later and I hear chaos ensuing front he living room again. Daddy is dealing with my 5 year old and fills me in on his spectacular smudging of his poop, thick and clay-like, all through the living room. You see, he suffers from encopresis and so the control of his bowels is iffy. The feeling of his dirty diaper is not something he likes so he wipes it wherever he’s at. It is an awful stage that has been going on for 9 months now. Thus the new Bissel. Which I bust out again, reload and begin deep cleaning the length of carpet he has managed to soil. It is an impressive 10 feet or so I would say. This takes me a while.

If only this was the end.

Our diving board needs to go. It is rusted and bolts are missing and besides, they are dangerous. We have been planning on this for a while. I finally asked my husband to go take care of it as my 5 year old can now vault the 4″ gate that surrounds the pool and will often stand and bounce on the diving board. He does this. My 5 year old gets stuck in his climbing tree. Climbs too high up these days. He is also, without clothes. Again. Another outfit and thankfully, Daddy takes the boys to the park to blow off steam!!!! I am here, getting this off my chest and hoping that tomorrow is a better day.

For those of you in need, I finally discovered a great company that sells the onesies bigger…up to age 12 I believe!! They are called CBObaby and go up to age 12!!! Link is at the bottom of this post hopefully it works!

I needed some for my 5 year old who not only puts his hands down his pants when he is needing a change, but will undress all the time and if he has soiled his nappy, will then try to “clean” it off by rubbing his bum, and dirty hands everywhere!!! To say we have been through a few rugs and carpet cleaners would be an understatement for the amount of cleaning I have had to do the passed year!!

Unfortunately, about 6-9 months after my stubborn non-verbal, ASD kiddo decided to finally use the toilet at 4.5, he suddenly decided to stop! I bought the extenders for the onesies but was only able to find a 4t for him at largest, and he’s about the size of a big 6 year old. The extenders were OK in a pinch and moment of desperation to give myself another moment longer to catch him before the mess, but they did not always work, the buttons were different sizes and would not latch. Also, it made it pretty easy for him to get it unhooked and gain access to his dirty diapers.

Another plus is the at these onesies are good quality, thick and yet cool, super soft cotton. They are definitely pricier than say Gerber onesies, but well worth the extra amount! Thankfully it is winter so the extra layer is helpful for the chill in the air as well. I have barely had to clean up after him since I found these and he is even starting to mand for getting his diaper changed rather than trying to run away and hide. Baby steps.

In case anyone is interested, I also found it useful that they offer the onesies in long sleeves, regular necks or scoop necks, as well as other colors.

OK, that is all for now! Hopefully will be blogging more consistently as the holidays have finally ended for us!!!

Link:

www.amazon.com/dp/B01DMVWHHC/ref=cm_sw_r_oth_tai_uPKtCbZ842PW2

The holidays are filled with cheery music, jingling bells, pretty lights, sugary delights….unless you live with ASD. In our home, we did prep work. Front-loading it is often called.

“In 1 week we are going to get our tree”

“In 3 sleeps the family will be here….2 sleeps….1….”

We read stories or watch videos about the holidays, to familiarize and basically warn them of the impending doom…

Each year we pick out our tree, we put it up and the lights go on. My oldest loves to help with the decorating, he loves the lights, the star on top of our tree.

My youngest…sure he loves the lights. He pulls them off he wants them so much. He loves to UN-decorate the tree. Especially the baubles…I mean, shiny balls…what isn’t their to love about them? He loved the star my oldest picked out so much, that he pulled the entire 7 foot tree down several times last year to get to it. Because everything must be inspected thoroughly. Then enjoyed at eye level and zoomed back and forth for affect, for the sensation of it all. And a scene…a family tradition…forget it. He would climb right in or throw the structures and trees.

This year we did things differently. We put up one decoration a day. A wreath, then the tree (we invested in an artificial pre-lit tree this year). Each day we had him put one or two ornaments on the tree himself, and watch each family member do the same. Within a week our tree was decorated. We dug out the star, but plugged it into the wall in the hall rather than put it on top of the tree. This was what saved the tree from being pulled down this year. Fortunately, my oldest was happy to create his very own star with paper and scissors (and tongue sticking out of a silly face of course). NO baubles, too tempting. I even got a train that goes around the tree trunk in the middle of the tree to make it more accommodating to my youngest’s interests as well as set up our Polar Express train beneath the tree. He was doing so well, I managed to buy some cotton and make a little scene with some bottle brush trees and characters from the Polar Express movie I bought on Amazon.com. Unbelievably he only tried to climb into the scene once! He never pulled the tree over to get to the star, and the fuzzy, plush ornaments I bought all stayed on the tree after we all hung them. Miracle!!!

Christmas morning was a big worry for me, each year has presented a new problem or difficult experience for one or the other kiddo. They either did not want to open the gifts, or if they opened them would not play with them for weeks or months or ever as they were too foreign. We still have baby toys kicking around as it’s difficult for them to transition to other toys. This year was different. This year, my dad played his Santa role and they BOTH loved it! My youngest now call’s him “Santa Poppa” and was completely enchanted by his suit and real beard. Last year he fled the room and would not go near him while in the suit. They BOTH opened their gifts, both enjoyed every new toy and continue to….They ripped the packaging open!!! It was messy and lovely. It was a real Christmas. There were no meltdowns, one minor mis-understanding later in the day as they got tired and run down, but it was very minor and over quickly. Christmas Day was magical. We listened to holiday music, lounged in our jammies, ate left over turkey from the dinner the night before, the kids did not, but they ate their usual. They played together and independently.

For two days after…I called it the Christmas Hangover. They. Were. A. Mess. As if all the wonder and magic left that night they went to bed and the next day they woke and literally, for two days they suffered with meltdowns and exhaustion. I did not care though…we made it through Christmas Day perfectly. It felt almost “normal” and as if the ASD took a holiday for a day…we had the magic I have so longed for and tried to create each year for them but failed to do so without overwhelming them.

We put up less and got more. We gave less and received more gratitude. We expected nothing and got it all. Who knows how next year will go, I have learned that each year is different and unpredictable for both kids. But at least I know now, that ultimately it will be OK. They have felt the magic and love and wonder I wanted them to experience. They get it now, why it is such a special time of year, such a special event. Maybe not in the same way others do…but deep down it is there. Now that it has happened once…I know it can and will happen again. It gave me hope and I have not had that kind of hope in a long while.

(Hardly do I feel “hopeless” but rather, uncertain. It is the unknown that is feared most.) I am so grateful that this holiday I saw a glimpse of what may be. It is enough to keep me going. To keep the fight strong and the support and therapies coming…because they can have it all…they will have it all. In their own way perhaps, but definitely, it is there now. Hope.

Today I am feeling more optimistic again.  New ABA company and new assessments are exhausting, but worth it, right??  We hope!  My youngest non-verbal son is a bundle of over-exhausted energy at night with the time change.  My oldest wants to be up  LONG before I am ready to function.  Fortunately, my 5 year old will sleep in even if he falls asleep too early.  My big kiddo who is 7, is like clockework though, so he finds adjusting a bit more challenging.  Fortunately, we have the “OK to Wake!” light to help him adjust to the hour difference in the morning!

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We bought our first one about 3 years ago when A. was getting up earlier and earlier every morning and I was losing sleep.  This happy little light became his buddy.  It took a couple months, but eventually he more or less understood that if he woke before the little clock turned green, he could get up and play in his room quietly.  When the light did turn green, he could come get me for breakfast.  Of course, ASD kiddos struggle sometimes with these constraints and sometimes he would be too hungry to wait.  Mostly, this worked though and now he does not even need the green light to signal that he has to be quiet until I wake, he just is!  This light broke recently, thanks to his younger brother tossing it over the bunk bed and into a wall when he was angry.  I tried to fix it but the little LED bulb inside was busted and would not light.  A. uses this light mainly for a sense of security now.  It has an easy button to push to turn on the timed night light when he is falling asleep or wakes during the night.  I ordered another one on amazon.com just a couple weeks ago, thankful they still make them!  Because A. sleeps on the top bunk, we use only the battery option, however, there is a USB cable that you can use to plug it into the wall with battery as back up in case of power outtage.

It is a durable light inspite of our recent experience of it breaking.  Over the years it has been tossed and dropped and bumped and never broke until recently.  This last toss was a good one and probably due to the various other knocks it has had, finally gave up!  With the time change (clockes going back for fall), this little nightlight has been very useful for regulating A.  Plus, as he and his younger brother share a room now, he knows that he is not allowed to wake his brother until the green light goes on.  We allow him to watch his ipad on his own with headphones, or play quietly in the livingroom.  As the light is portable, s(ince we do not use the cable), he is able to bring it with him and wait for the green light.  Also makes it easy to travel with!

This is ideal for young ones or kiddos who have trouble with the concepts of time.  Great for kids afraid of the dark and gives them some control over the light in their room.  We have found that even on it’s brightest setting, the light is not invasive to his brother who stays asleep undisturbed.  I find it a useful little light to turn on so I can find my way OUT of the bunk bed once I have gotten my boys to sleep as well!

Bonus is that it is not expensive, pretty durable for a clock, can be chordless, travels well,  and not too bright!  Great for kiddos still learning time, has an actual alarm mode which we have not needed yet.  Also customizable with two faces, one is a purple flower face, the other we call a green alien-robot face.  Makes a great gift as well for those kiddos transitioning into big kid rooms/beds or learning about time and needing to wake for school etc.

Happy Halloween 🎃 We’ve managed to paint/carve pumpkins this year. Not all of us together, but at least both kiddos did it and seemed to enjoy it.

Both kids have completed their parade march. My mainstreamed kiddo was with Dad at his school. I went to my SDC kiddo’s school. He did well, but I find myself with a heavy heart. I see all the other kiddos enjoying their costumes, each other’s, the music and excitement and anticipation of the night ahead. My 5 year old appears. Headphones on but smiling. He won’t go without me so I joined the parade. We did one lap of the two! This is an awesome accomplishment!!!

After spending the morning in the classroom with him, I look around at these wonderful paras and teachers. I’m thankful for their passion and belief in our kids. I wish I could see what they see. I love my kid SO much….I also want him to be less Autistic. I want him to talk, to reply, to participate. I want to see him enjoy the things regular kids do and not throw and be destructive. Maybe one day.

At the parade all classes go. There are several SDC classes above my 5 year olds. Will I be standing here next year? Most definitely. What about the year after? And after that?? Will my kiddo progress to the mild/moderate level??? Will we be changing schools? My hopes are perhaps too high.

I am dreading trick or treating tonight.

The holidays are coming…I want to crawl into my bed and not wake until it’s spring.

I love my kids and our world. The world The is our house. Our home. Where everything is just our kind of normal. Going out and seeing the way the other families are, their children, puts a weight on my shoulders I can not lift easily.

How do the parents of special needs kids evolve? Do we ever fully accept? At what point do I give up on what might be and live in the what is??

From day one, my boys have had a lot of bouncy energy.  With my oldest, I figured this energy was typical of boys in general, which of course, it is, however, his need for movement constantly is what I missed.  When my youngest was beginning to walk around and climb, I realized just how much movement and energy there was in my kiddos.  Having other children around on occasion also helped me see that my boys were not just typical boys.  Other children were able to sit for at least 5 minutes at a time to get through a cartoon.  My kiddos, needed to be upsidedown, literally on their heads while watching the cartoon that was supposed to give me time to fold laundry or do dishes etc.  They started climbing the walls…I do mean this literally!  My little one, at 18 months would try to scale the fireplace and get up on the mantel, or try to climb up on the sideboards around the dining room.  We had a tiny tree outback in our small garden, he broke many key branches off of it climbing up to the tip top; I am surprised the tree survived!

During this time, my children were still not diagnosed.  My older kiddo may have gotten his SPD label and been in speech therapy, but no ASD yet.  I was still doing home make-shift OT trying to cope with these little monkeys while my husband was still trying to come to grips with the fact that there was something amiss, and if so…what? Because SPD could not be it, that was not a real diagnosis.

GOOGLE.  Thank  you GOOGLE for existing!!! I honestly do not know if I could have survived without being able to research and find that out there, people were looking up answers to the same difficulties.  I discovered trampolines.  I call it “trampoline-therapy” because that is what it is for my kids.  I came to find out later, post diagnosis, that trampolines were utilized in almost every OT setting.

Our first trampoline was a small indoor one with a bar to help keep them from bouncing off.  We had a strict rule they had to hold on.  The one we picked was Little Tykes.

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Today this trampoline is in our family room where some of their toys live and there is enough space for it.  It is used regularly and has been used over and over by both my boys while watching TV, or in between playing or activities, or just on a whim.  We keep it out always, availible for whenever the urge hits them.  Does it help? Absolutely.  Will it cure anything? Of course not.  It is an outlet for their endless energy and itchy legs.

After 4 years of jumping indoors, my boys have not lost the pleasure or comfort of their trampoline so we keep it.  On the other hand, my youngest needed more recently, his energy far exceeds his older brothers and definitely seeks more joint compression and body slams.  This year he turned 5.  It was a terrible birthday, (for another post), but also quite typical of ASD.  His only highlight and joy was recieving his giant trampoline outside!

For those of  you who have the space, I would definitely consider getting one!

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OK.  These are my recommendations for the day…the second most useful tools we have ever invested in!  The small trampoline indoors is still used daily even though we have a large one outside.  We have not regretted these investmensts.  Start small if you are unsure.  Hope you find it as helpful as we have!

At the very beginning of this journey, I struggled a lot.  It truly felt as if there was no information, no doctor referral or recommendations for where to go or what to do next.  My oldest kiddo was diagnosed after my youngest because of this.  Perhaps it was his bubbly social personality that fooled the doctor, or perhaps the doctor was hesitant to say “autism” for whatever reason.  As I mentioned in previous posts, for my eldest, we were referred to an O.T. for evaluation and to Speech Therapy.  The O.T. we went to was terrible…really awful.  No information, no encouragement, no counciling or point of reference.  NO diagnostic information! We were more lost than ever with a our first label for our son, Sensory Processing Disorder.  What the heck???

“Low-muscle tone”

“Runs with a flat foot and is a bit awkward and slow”

“Sensative to certain textures/pressures”

etc…etc…

Nothing we did not already know.  So what did this MEAN???  Well, being in shock and bewildered, we left that office and never returned.  What do we all do when we need to know more about our kiddos in this day and age? GOOGLE.

So I was up all night, link after link of Sesory Processing Disorder and Occupational Therapies.  My husband was not sold on the diagnosis having never heard of it and unable to find anything legitimately stating it as an actual disorder.  (Which is because it is generally a symptom, or comorbid or another disorder, very rarely…if ever, a disorder on it’s own).

The more I read the more I realized I had to help my son, I had to get him used to things or find ways to help him cope.  I wanted to learn as much as I could to help him be happy again.  He had not been happy in a while and it was breaking my heart.

I took it upon myself to start doing some O.T. work with him myself.  Nothing fancy, I had no clue what I was doing, obviously, but something was better than sitting by and watching my boy suffer.

I bought books.  I read up, studied, GOOGLED some more and went to Amazon to find tools.  The first thing I bought, was an Amazon purchase.  Of all the things I have invested in over the years, these River Stones have been the most fun, most versatile and have never stopped therapeutically helping out my kiddos.

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(I’ve monetized my website ya’ll…it took me ages to figure it out as I’m no tech-genious, but I did it!  I get a small payment, but ultimately, I’m hoping my links to what has worked for me, helps others.  Promise not to link anything that I have not used or found useful!).

River Stones were our go-to during the rainy winter we had that first year of our journey.  We splayed them out throughout the living room, or down the hall, by the sofas…we played a game my sister and I made up as kids called ‘Aligator’ and tried not to fall into the river and get eaten!  The object of this ‘game’ was for my kiddo to stay on the stones, which un-beknownst to him, was exercising his core and working on his balance and body awareness, coordination etc.  If he fell off the ‘aligator’ (me) would chase him round the house until he either got tickle-attacked or he got safely back onto a River Stone.  Endless fun!!

Lava is also quite fun to play with these.  We also made the rainbow and walked up into the clouds one day, we crossed ravines, hopped to islands, played catch me (carefully) with his newly walking baby brother, going quickly in circles on the stones.

These were the first tool I bought and here we are still using them today, almost 4 years later!  His friends come over and love them as well, they provide a great base for imaginative play for all kids.

Yes, here we are!!  Most of the special needs parents I know, are very grateful for the school year to begin.  Admittedly, I am among them.  It is not that we do not want to see our children, or we want them to go away…not for me anyway.  Needing a break is healthy and normal to be a good parent, especially so for special needs parents. However, in my case at least, school provides structure, routine and fills the time that my kiddos can not with their difficulties.  So much of my time is willingly and loving spent playing and facilitating for my kiddos, but I am a mother, not a professional, and I have other responsibilities.  Some mom’s work. Good for them!! I have a job as well.  House work, daily care, therapist appointments for all involved, organization, scheduling, and much more I will not bore you with.

As school is in session now, I am taking a moment to catch up on my BLOG finally!!!  The summer was fun, filled with pool time and sunshine and boredome and therapies….yet it did not feel as if we had enough time to play.

I love that my little one, now big boy at 5 years old, (yikes), loves going to his new TK-school that I was so worried about.  He enjoys the structured time mostly, and knowing what is expected of him.  The undivided attention of paras and aides and teachers…

Then he comes home.  All too soon because his day is short.  3 hours!  We often find something to do immediately after, as coming home right away is a struggle.  Grocery store, Target, icecream shop, toy shop to play on the train table…(we have one of our own but it is always so much more fun there for some reason).  Car wash! Whatever I can think of to ease the transition into coming home.  Eventually we arrive in the driveway and he will not get out of the car still.  G. sits there for a good 20 minutes every day.  No matter what.  I gave up fighting him.  I leave the doors and windows open, park in the shade…and I wait on the doorstep until he is ready.  He never shuts the door when he finally emerges from the car.  Drives me nuts!  But at least he’s out.

Inside our routine is to snack.  Change his diaper.  Whichever comes first.  He got a trampoline for his birthday.  We jump if it’s not too hot out.  Sometimes swim.  I try to engage in play…with actual toys.  There is an abundance of toys in this house.  OT related and not.  Nothing interests him.  Hot Wheels, trains, puzzles, etc.  Nope.  He refuses everything.  Sometimes we can play on the XBOX, however, that is only 15 minutes then my timer goes off and we shut it off.  Too much creates a manic episode of jumping and body slamming and giggles that are borderline meltdown mode.  We use the ipad to work on speech which is alright.  None of it really fills the time.  We constantly have to change activities.  I try to do a quick laundry load, empty the dishwasher maybe…if I can.  Usually though, we sit for a good 45 minutes or so just snuggling while he plays a game on his ipad.  Because really, it engages him for a good chunk of time and I am exhausted.

It is 2:00.  Alarm goes off and I have to get A. Getting G. out the door to walk and pick up his brother, is always the most difficult and stressful part of my day.  I try to prepare him, try to front load him.  I need to make a visual schedule still, but somehow forget after a day of everything else.  Once out the door he goes with the flow pretty well.  It is always getting out the door.  Only for this task of getting his brother.  Nothing else.  Interesting isn’t it?

And this is school daze.  We go through the routines and motions of our day and the boys are dazed after school.  Tired.  I go through the motions dazed…like a robot trying to keep things “normal” and as routine as possible.  Four out of five of our weekdays have another after school thing…activity or therapy to attend.

I have 3 little hours to myself.  I do a lot of housework.  Maybe try to catch a yoga class instead once a week or so.  This is my goal at least…still in progress.  Self care is difficult.  A walk would be a good idea…

School Daze.  They are here.  They are flying by.  The first IEP is looming already….then it will be summer again!  School helps fill our day, helps them sleep well at night…helps them socialize and learn and grow.  It makes our days pass quickly which can be extremely long and exhausting when you have a couple kiddos that need a lot of 1:1 attention and monitoring etc.  I am grateful for school to be in session…I wish somehow it was not such a daze though and somehow more mindful…it goes by too quickly to feel present, but in some ways it takes the stress off of me to provide so much more than I do.

Still…I miss the summer, or the promise that comes with summer.