Isaac’s IEP and other ramblings

Recently I attended an IEP for Isaac. Over the past 9 years we have gone through many IEP’s and every 3 year evaluations… I am in awe of the once little boy who entered Wesley 9 years ago. He has not only grown physically but in many many other ways!!! He tried gen ed a few years back. And we tried a different autism classroom. But what we have learned is that Isaac is where he needs to be at Wesley School. He could not handle the gen ed buildings as they are not able to accommodate his sensory needs and his behaviors. So far this year Isaac has blown us away at how he has improved!!!!! While I can look at the many many ways ABA therapy and the team at Wesley and the right meds have helped…. This IEP also landed with an every 3 year eval. I was slapped with the reality that in many ways Isaac has improved however, Academically he has leveled out. These tests showed us some really cool information. He was able to do more testing than ever before. Also, it showed what I already knew. A delay in processing. For example….. You cannot hurry him. He thinks slower. He has an amazing mind and memory. But he processes all information at least a step behind. He has a higher than I expected reading level, but his comprehension of  that information is more delayed than what I thought.  He communicates much better than just a year ago. But realizing what that looks like is anything but a typical 9th grader. While he can be intimidating at 6’2″ and over 250#… He can also be an endearing teddy bear!!!! 

To compare…. Most 9th graders would not likely give their mom a kiss on her cheek before going out with a worker. Or giving mom and dad a squeeze. The belly laughs and unquenchable giggles of a much   younger person:) I enjoy watching Veggie Tales or Disney movies with Isaac. He enjoys a wide variety of music and movies. He loves disney and pixar movies way more than a typical 9th grader. And respecting that about him is something I am so thankful for Wesley School for!!! They accept him where he is as he is but they daily push him to be his best self!! As we look to the years ahead, we focus on what Isaac can do, and work to help him learn the life skills he needs. In the next few months we will be working to get Isaac a state ID, we will also be working with him on what to do if the adult he is with becomes sick while they are out. We are working with him on learning more skills in the home, and in the community. 

Needless to say this winter has been busy!!! 

Mark and I have had a rough January, we ended up with pneumonia. Aidan had bronchitis in December. Others have had viruses and colds but we are coming out the other side of that. The winter weather made some days tricky!! Madi is still in her boot from her surgery in November. She is now bearing weight and making forward progress!!! However, it does leave her foot a tad cold and exposed walking through this fluffy white stuff! 

We are hoping we feel better and gain energy soon to tackle some minor home repairs and some general upkeep. Those things are easier when the kids are at school. 
As we look back over the Christmas season, I am so thankful for the many people who made many needs not be needs any longer!

Any questions about my crazy life, lmk 🙂

~kv

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Family update

It has been a while since I have taken the time to really write and update on our family. Bear with me it is likely to be lengthy.

Lucas has been at Cornerstone University this fall studying audio production and continuing to pursue his musical interests! He has found a church that he enjoys and has made new friends. He has finals next week. I am going to GR on Monday as Isaac has a doctor appt. and I will be dropping off a care package. If anyone wants to send any cards or note or gift cards or treats, let me know 🙂 

Madeline has been struggling the past few weeks. On November 21 she had major foot surgery. She has severely flat feet and other foot issues. The doctor broke her heel and moved it, then screwed it where he wanted it. They did a tendon extension at the back of her leg. And the other part is kinda gross…. They used 3 screws to fuse some bones at the tope of her foot. I do have pictures if anyone is that curious but I figure many would be grossed out. We are very thankful for the care she received. Her doctor is a believer and I felt a great sense of peace going in to the whole process. She has been and will be no weight bearing until mid January. So this new developement of winter weather has been tough. She has a wheely scooter that a dear friend of line graciously offered to pay for us to rent it. I am so thankful for that help. She tires easily and still faces pain. She is falling behind in some areas at school due to having to leave school early because of pain. She has received a few cards and small gifts to encourage her. If you feel led, I know that it would encourage her.

Isaac has had one of his best years of school so far. He has had some behavior issues and struggles like he always will, but overall, this year is going well. With the time change we noticed some sleep and behavior challenges returned. Praying we can figure this out and help him contineto make forward progress. I cannot say it enough…. Wesley school is amazing and I am very pleased with the love and support he receives there. He also receives 15 hours a week of in home therapy. While we greatly appreciate that support he is in need of respite services, we need to find A way to get those services and support for the others so we can maybe take a day break or even get away overnight… It has been over 5 years since we got away without kids. It is needed.
Aidan has not stopped growing!!! He is currently the tallest at 6’3″!  He has enjoyed building on his tuba skills, he went to district solo and ensemble for band. He received a 2 for a duet and a 1 for the quintet he was in!!! I am happy to see him so excited about his progress. He is currently dealing with a bout of  bronchitis. Poor guy!!
Brendan has been doing well with school and loves band and choir class. He loves to give bedtime hugs and tries his best to make people smile 🙂 he is enjoyin being part of middle school Bible study and youth group at our church. He graduated from his autism program but still faces symptoms relate to autism that some days are exhausting for him as he works hard to do his best.
William has made so much progress in school this year. Math is his best subject. He struggles with speech and language. He receives in home therapy to help him and has various school supports as well. I am blown away at his progress! Still behind in some areas but I am just so pleased with the forward progress!!

Jonathan regularly reminds me that he will be 8 soon and he will still be my baby- even when he is old!! He is in speech at school and works hard to do his best. In some areas he has surpassed William, the only problem we have with that is that Will is aware enough of that that we need to be careful how we discuss things.

Mark is continuing to battle the symptoms of depression and PTSD. He also has been treating his sleep apnea for over a month now and we see that helping. He recently got through an MRI to check out his liver, all tests there indicate side effects from his Meds and we both are struggling to lose weight related to stress and meds.

I have been juggling taking Madi to school as opposed to her riding the bus. On top of my crazy morning rouine.  And some days are booked back to back all day. Other days, I push to get the kids to school then I return to bed in an attempt to make up for years of lost sleep;)
As we reflect on where we are and have been…. I find it humerous when doctors tell me to reduce my stress level and take care of myself…. I am well aware of how vital it is, but I also know the true struggle it is to find help so that I can take care of me. If you feel led to help in this area, please let me know and I can share some things that I personally am in need of.
Sorry to be long winded…. As always, feel free to ask for clarification if so desired. 🙂
Thank you for your prayers and love for my family:) 

Blessings, Kathleen

Tuba boy saga

Hi,

So it has been super crazy around here the past month or so…. In addition to my “normal” chaos… 

On April 23 we had a family situation that required sitting in the ER for almost 6 hours. 

On April 25, I got a phone call from my little boys school that our 7th grader Aidan, who had ridden his bike to school that day, had fallen and it appeared that his arm was broken.

Mark rushed to pick him up and get him to the ER, there they discovered that both the ulna and radius on his left arm were broken. The radius was displaced at a 30-40% degree…. ( insert ewwwww/ ouch)

They did awake procedures to get his bones realigned and set it in a splint and sling and sent him home. We did over the counter pain meds. 

On April 28 we saw the doctor and I took pictures of the xrays…


As you can see the bones were lined up and beginning to heal.

On May 3 they switched him to a brace. 

May 12 we were back for a check up and this is what the x rays looked like.


They rewarmed the brace and attempted to make in office adjustments. It was a PA as the DR was not in office that day.

Today when we got there the doctor saw the xrays and his response said it all… Not going the right way….

So he decided to remove the brace and cast the arm with manual manipulation…. He made the callus on the bone pop and this is what it looked like leaving the office today. 

Things are currently  lined up correctly and in a lovely BLUE cast.

I failed to mention tht on May 10 Aidan participated in the middle school band concert. He plays tuba. Can we all picture my boy with a broken wing (arm) carrying and playing a big ‘ol tuba??

Aidan is one tough cookie. He has obviously been in pain at times and has remained himself, he has a sweet smile and a kind heart. I like to give him grief about getting out of dish duty… And last night he HAD to get back in the kitchen and helped to brown meat for supper. 

He has missed some school due to pain, but is still doing well.

Please join us in prayer for his arm to heal and that surgery won’t be needed to fix it.

However, if he does need surgery I am sure we will make it through that.

Lots of other crazy like stuff going on here as well but oddly enough the broken arm takes front burner.

~ one tired momma

Pipe cleaner glasses…

So Isaac fell asleep about 8:30…and slept for 3 hours. Just as I am finishing my stuff and trying to settle for sleep– guess who woke up. And is loud.   
Tonight I grouched at Mark because this morning I intended to get lots done but fell asleep for 3 hours…. I told Mark tonight that taking time for my always bites me… I get farther behind and am no better rested or renewed. Not saying all this to whine for help. But the more I hear things like— I Don’t know how you do it…. Like there is another option????
But I am struggling each day but the option to stop is not there….
Isaac has not had respite in 14 months. Even if we could get an Isaac break, we still have others who are very needy and exhausting!

Just something to think about….. 

As summer approaches, my anxiety increases. NO breaks. We rotate who goes to church so every other week we would get a break. But only for church, and not with each other.
Please pray for wisdom, strength, peace, health…. 

Also consider, the next time you want to say– I don’t know how you do it…. Maybe find a way to help whomever you were saying that to…. Just a thought.


~kv

April 6, 2017

Wow. That is such an amazing title to my post… Days like this my creativity flops! So tired…. I feel like a new parent expresses they are tired…. I have been at this for 17 years…. But the severe sleep deprivation really hit when Isaac was born. 

Last night Isaac was up late and once he did fall asleep– then I couldn’t shut it off to get some rest myself….

Then he was up about 6:30… Nothing ever prepares you to wake up like hearing your child pounding on an already broken window…. Sigh. I spent the next 2 1/2 hours sitting barely on the edge of the loveseat, to keep him safe. So tired that I fell off the loveseat because I fell asleep… Then I sat for I don’t know how long on the floor twisting to keep him safe. My chiropractor is going to comment to ke about how off my hips are… Yes, yes I know! 

Anyway, got up and got him breakfat, he did settle and did do well with therapy today. He has a good bond with this therapist! 

Mark allowed me to go take a nap. He stayed downstairs until therapists left. I had dinner in the crock pot. So thankful for a meal I could pull Out of the freezer on a day like this. So so helpful!!!

A friend shared about how autism can divide the family. Her meaning was how her husband takes their one child to do things and she takes the other, many times one has to stay home with the special needs chipd because the outing would have been too much for them. Another friend shared a similar story and they have more than 2 kids. We obviously have 7 kids. That in and of itself is unique (so I am told).

But doing anything out of the normal with this group is always stressful.  Tonight while Madi was at a friends I decided that after supper we should go for a drive to the lake, to see the waves. 

Just convicing everyone to get shoes on and get to the van was crazy!! I bribed by promising to stop at Wesco and fill the popcorn buckets and grab slushies….

Even with that, Isaac was overly loud and dramatic in the van, shrieking and his LOUD echoing/ scripting made me cut the time AT the lake short 😦

Mark took some pictures at the lake tonight, living close to Lake Michigan is an amazing thing. I am always in awe of the beauty of the lake, all year around!! It just wasn’t as peaceful as I had hoped this time.

I did take a nap today, I heard my phone ring but didn’t get to answer it because I was so out of it. But I received a call and a lovely message from a MOPS mentor. This precious lady stayed with my kids he day we took Isaac in and received his autism diagnosis. She prayed with us and offered such helpful encouragement!!! It encouraged me so much that she took the time to call and leave me a message! More than that…. I know she prays for me and my family. I am so thankful for her sweet kind heart:)

My point- sleep deprivation is bad.

My family is loud. I have a great husband:)
~Kathleen

April update!

It has been a bit since I shared in this format.
I have not shared as much as normal about Autism this month ( April is autism awareness month). Why have I not been as chatty? I have been deep in the trenches that I am not even sure which end is up most days. 
Last spring it felt like Isaac hit a downward spiral behaviorally. Last February (2016) my mom had another stroke. I was dealing with that, with Isaac’s behaviors. Last June Brendan was diagnosed with autism. I was rarely able to step away for a visit with my folks. Most days were both Mark and myself right there. On call, all the time , to deal with the kiddos. We got severely behind on general cleaning and repairs. In the past year our home, which used to look lived in and loved, now looks like a war zone. Major holes in our walls. Broken lamps, broken light bulbs, broken chairs. We moved our folding table out and moved in a heavy outdoor picnic table. In hopes that the chairs not being there would mean they couldn’t be thrown. And the table can’t be easily flipped.
We are in the thick of it. Day in and day out. I was finally able to get up December 31 to see my folks. The in Early February we knew the end was near. I cut corners and carved time out of no where and got up to see my mom, for what I thought was my last good bye. I had to return home the next day. Then went back to my folks. We thought it would only be for a couple of days. But mom held on for 10 days. On February 14, my mom left us behind to walk with her heavenly Father. While I miss her deeply, I do not wish she were back here. She is able to walk in heaven. I bet their is an organ she is playing!!!:) I am sure she is smiling. Greeting friends in Christ, seeing her parents who went on to glory before her.

We traveled to PA for the funeral. All 9 of us. We as a family haven’t really traveled farther than my folks place in mid Michigan since we moved back to MI in Sept of 2008. So it was quite the undertaking for us. But God met us where we were. Clear, safe roads. Lucas stayed with Isaac in the church basement during the funeral so that Mark could be with me.
The week after the funeral we had another service in MI for the many friends and family there. 
I add this in to the Autism saga post to note the added stress and chaos we worked through.

We had issues with the trip, but overall, it went way smoother than we expected or planned for. Isaac enjoyed some time in the pool at the hotel and that really helped motivate positive behavior!!

Spring is tough for us as the weather changes,the time changes. Allergies flare. I can’t really explain it. But there is documented proof that Isaac’s behaviors increase. We do have regular in home therapy support. And he is improving at school and while still having behaviors (which is to be expected) the team is more prepared and Isaac is in a better place medication wise as well.
But as I face tough moments in my days I go first to God in prayer. We have this constant conversation…. He grants me wisdom to do and say the things I need to each moment the day. He provides strength. 
But, one thing I miss….. My mom. while my folks and Mark’s folks too… Were not able to physically help much with Isaac directly. I used to command talk to my mom for hours. I would pause to discipline and direct kiddos…. Hang up and call back when it was quieter… But she listened. She let me cry, talk, share my rough spots. I miss that. I know autism is hard to understand for many. For example…. I have heard the suggestion to “discipline that child more and those behaviors will change right away”. More or less I have been advised to spank the autism out of my kid(s). Well. It doesn’t work that way. Autism is a neurological disorder. It’s like they have a different operating system. Different not less . There is a spectrum to autism. Some have full speech, and the big issues they have are mainly social. Others can be impacted with no ability to speak, maybe a seizure disorder, and more.
Isaac has many great and helpful skills. He is potty trained, he is able to dress himself. Routinely he does still need supervised with this. He is a pretty smart kiddo however there are cognitive delays and there are significant behaviors and stimming. We are working at this the best we can. But in the past 12 months, Isaac has broken multiple windows. All were double pane so we boarded up as we could. But he still pounds on them. He still kicks huge gaping holes in our walls. We have massive amounts of water damage in our downstairs bathroom. We just redid that summer of 2012. But it needs done again. We need to replace drywall. Hopefully with thicker less likely to be kicked through kind of stuff.. and the supplies that go with that . Our funds are focused on food, housing and clothes and medical. The upkeep and damage repairs are beyond our means. We have been blessed with some outside support from a church that we do not attend, the have helped with many clothing and multiple meal needs, they showed up about a month after my mom died with a table full of meals. They filled my freezers!!!! I have been able to pull frozen meals and incorporate those things into my menu and it helps me greatly!!!!
I am trying to explain what life is like for us…. I never will be able to:). Multiple kids do not have the reasoning skills to make safe choices. And while you may say– all kids are like that…. I say- this is extreme and we are stretched beyond our breaking point daily to keep kiddos loved, safe, needs met and things like that. 
If you feel so led to DO something during the month of April to support a family touched by autism, but need ideas. Ask. I have shared lists in the past and am willing to try to type up a new list of current needs.
One thing that we need that you can do…. Pray. I do not take that lightly, I treasure those prayers. I KNOW my mom prayed many times a day for me and my crew. I am sure my dad still does. To sit there with them and know they were praying for us through some of our toughest times….. I am so thankful for godly parents. ( both mine and Mark’s).

Autism is not contagious. It doesn’t go away in 10-14 days like a virus. It doesn’t “look” too different. Meaning, physically you may not know why my child behaved as they do….. Many things are unseen. Many people face many things that others do not see or know. My tidbit of insight is this…. 
Demonstrate kindness to others, whether you think they deserve it OR need it 🙂
Blessings

Kathleen 

Feeling jealous…..

I wasn’t sure how to really say this, but I KNOW I am not alone, at least among other special needs families.

As much as I can skip over political posts and swearing and pictures I don’t care to see or posts that just don’t strike my fancy.. i can skip over- no big deal. 

Want to know what gets me? What trips me up?  People posting selfies of them with their date and saying date night… And some stating they get to be away alone overnight….and some of these people post monthly or at least several times a year…. 

It has been 4 1/2 years since Mark and I got away alone over night. We haven’t had an evening date in years. We have had some keep a few kids. At the most 2 hours… I realize my crew is a lot to handle. But many have asked how they can help… And while I KNOW it is asking a lot. I dream of getting away with Mark. 

This coming week we have a friend who is willing to come be Isaac’s buddy on a day that he has no school but others do have school. He will love that! So will our friend!!! She is an amazing lady who knows how to work with kids like Isaac. But the thing is– she is busy, very busy. And she still agreed to do this for us. That means A LOT to me. The step past lip service. To being the hands and feet! In the weeks prior to Christmas many stepped up to help meet needs, boots, coats, Christmas gifts. I am so thankful for those people who helped that way! So while my comments about seeing other people on dates… While this sounds selfish of me. It is one of the many emotions I struggle with. I have glimpses of guilt that I feel that way. Or that my family is a burden to some. I feel grief from time to time in the most unexpected ways….. Like today when Jonathan stated a whole paragraph to me and I understood every word- not all correct but considering how far behind he used to be, to see that- joy! But then seeing him read and seeing him at Will’s level if not surpassing William… That feels like a sucker punch. Joy on the one hand, sadness on the other…

I haven’t gotten much quality sleep lately. But through it all… I never would trade my kids. ( loan them out for short term breaks;)!!!!!) And my, well… everything gets messed up when we hit these severely messed up sleep spells… I feel like I focus on what I can’t have instead of being grateful for what I do have…. Today I took an hour nap. Today I finally got the summer clothes put in bins and Mark lugged them to the basement… I have been trying to stay on task with my flylady jobs and routine… In spite of complete exhaustion, life doesn’t just stop. 

We grab a lunch out when we can. While the kids are at school… Evenings and weekends and snow days can be really tough. And the thing tonight that helped me past my glimmer of jealousy… I love my husband and want to spend time with him , and he with me … I think that is a pretty cool thing!! I am also reminded by many of my other friends that we are not alone in our struggle… Many other special needs families are desperately in need of a break. A serious break.

I am trying to carve out a whole day with NO appointments that I can hope to schedule a hair cut ( gift certificate) and a massage ( gift certificate) and roam aimlessly around several goodwill or salvation army stores for new to me treasures…. 

I am looking for a day to take- for me. For my mental well being. It will come. As will a weekend or night away with my hubby. It is likely to be many years.. Isaac will never live independently. So affording quality capable help isn’t likely to get easier… But in the midst of exhaustion, jealousy, and other emotions…. I have hope. Because of Jesus and the strength and grace HE alone provides do I face each day….

So- to those of you who have shared date pictures. My goal was NOT to make you feel bad. I am happy for you- I truly am!! But my emotions get me at times…..
Blessings from 

~ one tired momma

“Sleep” study and “snow” days…

Sunday to Monday Isaac was up almost the entire night, he did not have school Monday so after I got everyone else to school– I went back to bed. Then Mark and I worked around the house on some cleaning projects, then we took Isaac out to lunch. I realize McDonald’s isn’t the healthiest option but Isaac is able to eat their burgers ( just the meat- no bun), lettuce, pickles and fries. And he rarely  is allowed pop so that is a fun treat for him. He did so well!! Coated everything in ketchup


He LOVES his ketchup

Every last drip, drop of ketchup

Momma was mean and said “look at me please”

Then after lunch we went to Family Dollar. I wanted to grab a small snack for myself for the sleep study and a drink.

Isaac did so well in the store, he helped push the cart and stayed right with us.  He was looking at multiple movies but when I said- ok bud– only 1 movie please he put the others back with no fussing!!!  He also chose a treat to share with is siblings.
Then Monday evening after supper, in the freezing rain ( have I ever told you how much I HATE freezing rain…) We drove about 15 minutes away to a Sleep Center where Isaac got hooked up to stuff for a sleep study.  He followed directions fabulously, got changed into Pj’s and sat ready to get wired up! The young lady who worked with Isaac was so respectful to him! She asked HIM questions and explained things clearly yet not “dumbing down”. Isaac responded well to this, followed instructions. He was tucked in to bed about 9. And lights were off, food network quietly played for him to relax to. And we waited, and waited, and waited…. He tossed, he turned, he chattered, he quoted movies, he tried to tell knock knock jokes.. He sat up and flopped back down. About 12 I laid down with him and patted his back and spoke quietly to him… He drifted off enough that I went and laid down on my fold out bed. However– I couldn’t fall asleep as I had a massive headache…

Isaac was only asleep about 90 minutes then awake a while longer… The mindless movie quotes and comments like ‘ I really need to sleep now’ followed by ‘ nope, not happening’ almost had me in tears from trying to not bust out laughing!!! I wonder what the techs watching and listening thought of our Isaac?! The young lady helping us told us of a friend she had in 3/4 grade who had autism and how they were great friends! And that he taught her a lot. 

Eventually he drifted back off to sleep.. Not before he said ‘I just wanna go home’… About 7:10 Isaac was greeted for the morning. While he was groggy and sleepy eyed he followed directions to get unhooked from all those wires. He got dressed and we headed home. Isaac got less than 5 1/2 hours of sleep. Mom got less than 3.

About then I get a text from Mark telling me that the kids all had no school due to icy roads… So home to face the day, not the day I had planned on severely limited sleep….
I was able to get Aidan a second opinion with an eye doctor who was willing to help us out. We had hoped to look in to contacts to help him but due to the severity of the sight loss in his left eye- it is not advised at this point. Because at least glasses protect the good eye some.

We will be trying a weekend dilation treatment plan to help  the weak eye. He has muscle weakness and is legally blind in his left eye. We are praying that will somehow change so that he will regain sight. You likely wouldn’t know just by looking at him. His left eye is lazy but angles outwards more than inwards and is less noticable. He has such a sweet spirit about all this and he has an amazing smile. He will be 13 in March, and while he acts very much like a 12-13 year old boy he also is a pretty neat kid who loves his Isaac and in fact will now give me a hug without running away saying gross!!!! Lol!!! 
Then in home therapy and the behavior specialist showed up so that delayed supper prep. All while I still have a nasty head ache and am so exhausted I can’t even see straight… 

I worked with Mark to get homemade pizza made up for the kids. Ran out of yeast and didn’t have enough for us! Lol. I haven’t run out of yeast in years!!! Off to GFS to see if I can find some deals tomorrow after BSF 🙂 
So my grocery shopping didn’t happen. I did take Aidan to Aldi on the way home for a few things but didn’t get my full shopping done… I still need to do that. 

High school exams have been changed so Thursday, Friday and Monday will be half days… Sigh. So when can I take a nap???!!!!

Isaac is resting right now, and as tired as I am, I don’t know if I will have an easy time falling asleep as he has had so many nights of weird sleep…. 

The take away?

I am researching autism sleep studies and how we can get Isaac to be part of one. 

Please pray for rest, mental calm, and renewed energy and hope! 

Blessings!

~one tired momma

Silly me- I tried to sleep….

So I remember drifting off to sleep after midnight. I struggled to relax because I have this knot in my neck- severe pain, even when I attempt to relax. A stress related pinched nerve or more.

I woke about 3:30- I notice Mark was up to the bathroom and Isaac was now in our room- settling in on the loveseat.

3:50…. Apparently Mark and I drifted off to sleep but a loud bang had us both sitting up in bed ( no easy feat when your pain level is “my head is gonna fall off from pain level”).

Beside the loveseat is an old nightstand that holds a few things and displays a few stuffed moose. But the area in front and beside end up being clutter collectors. I had recently semi organized my piles with the plan of returning to them to declutter…. Isaac however has been slamming and tipping the nightstand off and on for weeks. Started about the beginning of Christmas break.

And that is what he did tonight- again. He has a track record for randomness and swiping. Meaning he cleared off the moose and a few books from the top then began rocking the night stand. However– I was sleeping enough to not respond to him so he grabbed it by the back ( all while he is LAYING on the loveseat) and flips it forward. Dumping the contents and the neatly organized binders beside of course fell every which way.

So here I lay- 45 minutes later… Mess still there. Mark trying to get some sleep (His meds are off) and Isaac vocalizing above a mumbled tone with random loud vocalizations…. He is awake, wide awake, wired and needs watching. He has attempted to kick walls, windows and further toss books and binders… Why?? Is he angry? Upset? Hurting? No- not to my knowledge, he is just awake and apparently feels the desire to make sure mom is as well. I do not understand how his mind works. I do not grasp why tipping and swiping things seems so fun for him. He doesn’t appear to be malicious, or intending to destroy something ( right now anyway) so why do this??? I have no idea. Most times lately I have him clean up his messes. But my binders and a small stash of my own clutter on top of said binders beside the stand all fell to where the stand was… The stand was picked up one handed behind and over his shoulder to flip it forward and dump it out. Sometimes it is just not the time to make him clean up as it will only waken him MORE when my goal is him sleeping

Lately I have considered having Mark bolt it to the wall but I figured Isaac will just rock it until it comes loose or kick it loose…

So what could I have done to prevent this? 1) not sleep. 2) never blink so as to give complete attention to Isaac 3) nothing, like normal this is random and this is my life.

Isaac is semi content this moment. But if I close my eyes too long he becomes louder and grabs at any loose stuff from the tipped nightstand mess that I was trying to avoid cleaning up when we need to focus on SLEEP….

Sigh. I haven’t posted too often about this but since he returned to school he slept 2 full nights- in his own bed, in his own room. The rest of the nights he may have just been up late, up early, up randomly. Maybe he was up and awake but semi quietly on his kindle. Why do I “allow” Isaac on his kindle during sleep hours when others have a curfew on their devices? Because it is my silly attempt to keep him safe and occupied so I can close and eye or two and drift off for a few minutes at a time. 

Why don’t I teach him that it is NOT time for electronics and that he needs to sleep?? Apparently if you feel I could just snap my fingers and this would be better– you don’t know autism and sleep issues. We have nights were he is too loud and I do all I can to help him be quiet and get the rest HE needs- let alone the rest of the house and mom and dad.

Many nights he ends up turning veggie tales or 3-2-1 penquins on and drifts off OR has that on and is STILL loud verbally and still continues a self tapping/ hitting path that you just don’t stop… 

I know this sounds cruel but I find great encouragement in hearing from other autism parents on this, vs typical parents who have their 5-10 step plan for correct sleep laid out. Because they get it. I have worked years with Isaac on calm sleep. Some nights due to everything I try he sleeps well. And other nights due to those exact same things that worked the night before won’t touch him tonight and he is simply wide awake. 

I doubt I can ever fully and adequately explain his severe sleep disturbances to you. It becomes so “normal” for me to not get more than 5-30 minutes of sleep at a time or to be awake HOURS during my night with Isaac, that I don’t bother saying anything because you wouldn’t get it anyway and that’s ok to some extent. It isn’t your life so it’s really understandable and ok that you don’t understand or grasp what I’m saying.
He had swimming on Wednesday so he “should” have slept great tonight. Should and reality are very different things.

I had 1 night of full sleep over Christmas break ( about 6 hours) and 1 night of about 6 hours sleep since they returned to school. How on earth can he function on so little sleep?!? I have no idea but this is him. This is our life. Tuesday we had a snow day due to bad weather, enough to warrant a closing to keep people safe. The reality is it was freezing rain earlier and now it is snowing on top of said ice, not mounds of either. But enough to possibly close school again. **** updated to state that all of my kids have a bad weather day****

Add to that even his calming music or a calming show is absolutely hysterical to him and he begins to laugh uncontrollably, loudly, loudly scripting whatever movie lines seem to comfort him….. Over and over and over.

I hear it so often I tend to block much of it out. It isn’t cute or funny to me at this hour, maybe that is my pain talking. Or it could be the lack of sleep, from just tonight or the accumulated severe loss of sleep over the past 14 years.

Then it becomes to early in the morning to focus on getting him to go back to sleep because then I’d have a hard time waking him for school… So I have the pleasure of guessing what the best choice is all while barely being able to stand due to my own pain and lack of sleep issues.

“Seriously, you are so overly dramatic”..…. Really? I dare you to live my life for one full 24 hours. Or a full 7 days, ( 24/7)… I dare you!!!( insert my evil gril and maniacal chuckle)  I dare you think he is alseep and lay down, just as you slightly relax and begin to give into blissful sleep, you are needed NOW!!!  Attempt to sit or lay to relax and sleep at any point in your day, just as your backside hits the chair or couch– bounce back up and juggle kids behaviors…. Exhaustedly stumble to sit, feet so sore from standing that you HAVE to sit, but needing to be involved in a situation that you may “sit” but not be able to relax….

I used to look so forward to my 3 nights once a month when Isaac was at respite. That hasn’t happened since March. And they are closing soon anyway so that isn’t even a light in the tunnel to give me hope.
Why am I still rambling about this?? Because he is still wide awake, then if he does fall asleep– guess what?? My alarm goes off in a bit to tell.ME to get up and dressed. But wait, he is in my room, my closet is blocked due to the dumped night stand. I am so tired I truly can’t walk straight but it is time to start my day…. You know, my quiet time with God, my time to exercise, my time to shower and get myself ready for the day…. Ha ha ha that is So absolutely hysterical…. How do I keep him safe and out of trouble? How do I step into the bathroom or closet to change, wash or whatever?? 

Not trying to make you feel bad or make you guilty and say ” oh that’s so sad wish I could help”. Truth is you likely have an opinion on how I should do things, I know this because enough times over the past how many years have I heard everyone else’s opinion. Like just now, kindle away, I think I hear him drifting off to sleep. Then he loudly, dramatically fake falls off the loveseat, jumps up loudly roars his way to his room, to grab a stuffed animal. He returns, flops on the loveseat, laughs excessively about it, completely bundles himself…. 

Here I sit, listening to the furnace come on, hearing others sleeping. And praying that he doesn’t wake anyone else- at least not yet… 

And now—- no school.but mom is awake….

~ one tired momma

Sleep deprivation…. A saga

​Isaac has been up since 5:30. My issue with that is the incessant giggling…. The hyper dramatics ( falling off the love seat in a fit of giggles)…..

Yeah, sounds silly of me to complain doesn’t it? However, when you are perpetually, daily, consistently,severely sleep deprived it affects every aspect of your life. 

I remember my days as a new mom. I normally just laid down or sat down with said little bundle and nursed them or held them to sleep, ( both of us to sleep!) I had mastered the art of co sleeping safely, and nursing in my sleep so that the only thing I had to really do was change them. Of course we had night issues with fevers, teething, gassy baby and stuff like that. But in all honesty— looking back. It was short lived.

Sleep deprivation for me has been years. Not due to newborns. But due to Isaac. Will also has sleep issues, as does Brendan but they are better able to entertain themselves safely ( most of the time!) Let alone the fact that co sleeping doesn’t work anymore!!! ( hasn’t for years — well, other than Mark and me in one bed but that is not the point) 

I have mentioned how this affects some people, or how it affects Isaac or us as a family. We have worked hard over the years when there severe sleep issues and he is loud of just bringing him into our room, since he shares a room again..  Mark, due to PTSD meds routinely sleeps through Isaac night waking episodes. Not always and he too struggles with lack of sleep but not always due to Isaac related issues.

Isaac is not a quiet child! ( I almost feel like I am writing a paper. I am making statements then spend a paragraph backing that up with descriptive facts!! Do I need to list my sources? Lol!!!!!!

Anyway– my point is this– when kids are on break, it hits in a different way than when they are at school. Some days when they are at school- I am able to get everyone to school and come home, clean for several hours, then crash and get up in time to juggle post school life.

Most days however- I get Isaac to school ( as most of the time everyone else consistently rides their bus to/ from school) and I go to a meeting, an appointment, the grocery store, Bible study, or I get to sit for an hour or so then have back to back meetings. Lately, I have discovered a blanket and a timer in the van are very helpful!!! 

But what now? The kids are home?? 

I laid here writing this while Isaac paced or flopped or poked me with his train track sword…( flexible and he finds poking people to be absolutely hilarious) , oh- and telling himself knock knock jokes. The funny thing there, he acts surprised at the punch line!!  OR he gets annoyed when he says knock knock too many times and no one ( like me) responds so he HAS to answer himself!!!!!

He is now offering me fake food… ( anybody want a wonton?) He repeats so much. Most of what he is saying now is quoted and scripted so there really is no interupting him because he will start at the beginning until he gets it right. Or until he has said it enough times!! 

Sleep deprivation, in the moment does have glimpses of humor, and heart swelling joy when you see the many things he can say/ do..,. But the longer term effects are like no other.
I will share about this again. I will have more nights/ days like this…. Where the sleep deprivation is so exhausting it is mind numbing…. I cling to God. My daily routine is so different than I schedule or plan or hope it will be…. But I take time with God throughout. I rarely start my day uninterrupted by a kid! I rarely can manage to get up before all the kids to have a time of exercise or bible study. But I find my day at least has HOPE ,and I have strength when I pause to praise my Savior and creator. 

As the new yeat hits…. Sleep deprivation survival tactics will be a goal! How do I deal with this and thrive?  I’m not sure it is possible to do more than just survive, but I’m going to try!!!
~one tired momma