Perspective…

Last Saturday I got a call from our pharmacy… Our insurance was in a contract debate and they could not process our prescriptions. I panicked! She told me the only place that was accepting the insurance was Meijer. We had left Meijer a long time ago because of prices for out of pocket meds, plus how long it takes to get meds filled, and the lines to pick up. Plus for our family size, it gets confusing and I prefer to have a smaller pharmacy helping me out.
Today, I got a personal call from the Pharmacist at our local Hometown Pharmacy, by Tuesday morning we should be able to return our meds and our business to our small, personable pharmacy πŸ™‚ I totally did a happy dance!! But the thing that me smile the biggest was… She called me personally and first. My family is important to them. They have helped me with so much!!! It may not be a big deal but it was HUGE for my family!!!!

This week has had some stressful bumps with regards to bussing. In the past I have shared frustrations about Isaac being safe ON the bus. He is definitely in a good spot right now. He is able to walk to his bus with me near by, I greet bus driver and Isaac gets on, hangs up his backpack and goes and sits down on his seat, the bus aid buckles him in. But routinely when I leave I hear happy noises! This is from the same kid that was suspended from the bus (understandably) for being aggressive. This is the kid from way back that I used to pick up and put on the bus…

So if all that is going well, what is the problem. Well, it takes more than 2 seconds to load/unload a student (a special needs student) some people seem to be way too impatient. For the most part, we have understanding neighbors, some have observed when the bus goes and they, on their own changed their personal departure time. That area is super busy for about 15-20 minutes every morning at that time. I have a neighbor that has seen me get honked at, yelled at and other loveliness. And she has been positive and encouraging. I know others that know us, driving by they have seen stuff. Over the past several years as we faced many struggles with Isaac, including me having to get on the bus to buckle him in or unbuckle him… They changed the stop from a typical red flashers stop to a full – pull the bus off the road hazard stop. ( 4 ways – but main road traffic continues while we get him on safely. However I have one neighbor that has complained, yelled at Isaac’s amazing bus driver. Well actually both of the adults in the home have yelled at the bus driver 😦 they have complained to bussing.

Initially this week upon the new/latest complaint and bussing telling me how we needed to make a change, again, to accommodate someone else…. It really upset me, frustrated me. I got defensive. Keeping Isaac safe is always a huge priority.

I was upset, self protective and defensive… Took a step back, prayed about how to handle things… I considered a thank you note to a few neighbors who are super kind and gracious and patient. Still not sure how I want to handle that but it struck me that instead of being defensive I should pray for my neighbors. I am embarrassed to share how long it took for the idea to pray for my neighbors and that they likely do not know Jesus and that (as well as Isaac’s safety) should be a priority.

There are many things that can be changed by prayer, my attitude and my perspective. My lengthy post can be summed up in my eyes as… I am not in control– God is. I was considering another area of my life where God was waiting for me to release control over to Him, to trust him with this one particular situation. But I am repeatedly reminded that God wants all of me. Not just the easy parts…

~ one tired momma

Advertisements

Nine Years

So, it’s been nine years since the robbery that sent me on a downward spiral of PTSD and everything that goes with it. Some times I can’t believe it’s been that long. It feels like it was maybe a few months ago. Other times it feels like a lifetime ago. I forget things like people’s names I knew back then. Either way, so much has changed.

I’ve been told that I’m making progress. Frankly, I don’t see or feel it. I guess that’s part of the PTSD and depression that make me feel that way. I can only see the old me and know how different I am now. Sure, there are times that I may appear to be ok, but the truth is…I only let people see me during the good times. There are plenty of other times that I don’t want you to see.

I still struggle with feelings of inadequacy. I feel like I’ve let my family down because I am not able to work. And I’ve tried. I’ve gotten a couple jobs in the last few years. One job I didn’t even make it to orientation. The next job I did ok with while I was alone doing the training modules on the computer, but once I had to join everyone else I just couldn’t do it. The anxiety I feel is dabilitating. Of course, I saw myself as a major failure. My family was struggling and I did nothing to help.

Kind of a strange and scary thing has begun to occur with more frequency… I will be out of the house and I’ll completely forget where I’m going. And even have no idea where I am. Recently I was driving down a road I’ve been driving down for 26 years, and I lost where I was. Nothing looked familiar. Sheer panic raced through my mind and body. Thankfully it didn’t last too long and eventually I came up to an intersection that looked familiar.

I look at situations like the one described above and I start to worry/ wonder about the long-term affects of PTSD and the meds I’m taking. It scares me. I can’t find anything that shows test results or research done with any conclusive information.

When I think about 9 years of PTSD I think two things. First, I think about people I know who have struggled with it for many more years than I have. They are surviving, just like I will do. I also think about how my life is now with the “new me”. I still don’t know exactly how to be this new me. I’m still figuring it out. I keep trying to do things the old me would/could do. I get frustrated quite a bit when things don’t work out…things like when I tried going back to college, when I tried to work at those jobs, and when I try to do things like going to a crowded store or to church or a family gathering without taking my anxiety meds.

So, 9 years… I don’t know what to think or feel about it. I’m happy I’m alive and I’ve had these last 9 years to be with my family. I still mourn the loss of the old me. He wasn’t by any means perfect, but I had 33 years as that me. I had finally figured a few things out. Now the learning has started over again. I’m trying to do the best I can with the me I’ve got. So, please be patient.

I’d like to thank anyone who actually read all the way through my rambling. Your support means so much to me! Thank you and God bless you!

-mark

He’s got skills!!

Ok, so this has happened off and on over this past summer… Isaac will ask for “clippers”, when asked what kind, he normally says “for my fingers”! The other night he appeared to be resting quietly in his room, no screaming or wall kicking… All of the sudden Isaac burst into our room, came over to my nightstand and just pointed… When he points it is not a straight finger point, he kind of makes his finger “flash”… Not good at explaining it but he went from no pointing years ago to this. πŸ™‚

Anyway, Just now I caught Isaac appropriately using the nail clippers. He is unable to do his own toe nails but…. He can occasionally do his fingers!!!

I know this may not be cause for most to get this excited… I mean, our 8 year old can clip his own finger and toe nails. But I am so excited that Isaac, my 16year old, can use nail clippers correctly!!!!

My momma heart is bursting! It is moments like this that I grab my phone to take a picture, then I want to call my mom and tell her. She always rejoiced with me at the tiniest things! I am pretty sure she would tearful with joy over this, like I am!!!

Go Isaac!!!

Getting back in step

So the kids just finished their second week back to school…

1 in college, sophomore year.

2 in high school ( well age wise 3… It is tricky to place Isaac at a grade level)

1 in middle school

And 2 in elementary!

Several struggle without a routine and need the consistentcy, and I cannot maintain that strick of a routine over the summer! Or on breaks.

Two of the kids are in new to them buildings. All in all, I really see so many positives so far this year.

Madi is enrolled through her school to do half day in school and half day in cosmetology school. She seems to be happy with that right now!

Aidan is in 9th grade… But given his height and body mass, people often think he is much older. He is in marching band and he has put in many many hours on personal practice outside of the required rehearsals. He is doing great! He was very disappointed that he was unable to march last night due to a few bloody noses too close to heading out on the field. He has one more football game to play at and then weekend competitions begin! Pray for him as he balances school, band and stuff at home plus as we figure out the best way to help him with allergies and all that goes with that.

Brendan also moved to a new building this year. His first time having a combination locker. And the weird set up of classrooms… He has adjusted well so far. I told him he would have that locker combination down and the path to the correct classes before the end of the first week of school. I think he would grin at his accomplishments. He also plays in the school band. Both Aidan and Brendan play tuba! Brendan seems to be adjusting as expected, many times change is super difficult for him. But I feel like he was receptive to some suggestions we made to help things for smoother.

William is in 4 th grade! We were thrilled to see God work in all the details.. he has the same resource room teacher, the same para pro!! And there was one teacher we were not comfortable working with again. And had been praying for months about that. And he did not get that teacher. But, upon looking up his teacher on the school website I mentioned her first name Mark said, I went to school with a girl with that name …turns out, it actually is her! So we look forward to many new adjustments as he continues to grow …

Jon is in 3rd grade he is very excited because at their school they do a water safety class at a local indoor pool. He also, loves to giggle and kind of goof around. This kid routinely has a very kind heart!!

I skipped Isaac. It is hard to label him with a specific grade level. His ability and skill level were technically about 3rd grade or below, age wise he would be in 10th grade. He has begun this year in an amazing way… First day of school, he walked off the bus by himself and got himself in to school and in to his classroom!!! At Wesley they have lots of staff getting students in and out of the building. Isaac used to need at least one staff member to not only walk in with him but hold his hand or loop a hand through his bus harness, because at that point Isaac was prone to bolting and running off. So far this year, that has not been an issue. He is adjusting to new AFO’S, new glasses and a new school year. I shared recently on Facebook about Isaac’s new glasses. One thing I have found that I am since becoming not just a mother but Isaac’s mom. I have this boldness to educate others about Isaac. About autism. About how God made Isaac unique! But in all honesty, God made each of us and we are all individual and unique!! But some kids with autism are just so amazingly wired, that I can’t help but step back and be completely awestruck!! Isaac has his quirks, we have been honest about a lot of them! Helping him grow and learn to respect boundaries has been a lengthy work in progress. For example: Sunday at church Isaac was a little louder than he has been the past few weeks, so I wrote Shhhh on a piece of paper and pointed to it… Isaac responds with a slightly louder than was ok and says oh sorry Mom… Lol!!! I of course struggle to not laugh out loud at him!!!

But my point about Isaac was, he has come a long way! And the first 2 weeks of school have never been better. Today was a little rocky at times but when Isaac senses stress, in me for example, he responds to it in a different way. He may become louder than normal, he may sob, he may have a variety of responses. But the point is…. Isaac is way more aware than I used to think he was. And today, something as simple as “mom, I need your help” instead of hitting, kicking or screaming at me, brought me to tears.

Anyway, I too have a special thing I do one day a week when the kids are in school! I go to a Bible study. Mark does all he can to enable that! Meaning, if a kid is sick, he insists that I go and he can take care of them. Someday, I hope the kids realize all that dad and mom has done for them, because we love them.

If you stayed reading this long…. Good job!!!

And as always, prayers are welcome.

~kathleen

Isaac’s camp week!

Isaac has been home from camp for 1 week now, and we are already looking ahead to next year! Next year he will be in a different program.

I enjoy the pictures from over the years. Isaac knew when camp was and was counting down to his week at camp!!

Isaac has a one on one worker. His own personal counselor. I was impressed by the way one of heads of special needs recognized Isaac from his previous times at camp. I am so thankful that even though a few years ago, Isaac broke several windows at camp, and had a bit of a rough week. That was a rough summer all around …

This year I received pictures of Isaac having fun and being alongside his typical cabin mates!!!

Isaac’s cabin 2018

It was exciting to see that Isaac had cabinmates similar size. I recall the year he was super aggressive, he has some much smaller guys in his cabin and I was concerned for their safety! But of course, staff at Springhill ensured everyone’s safety!

This year I sent this one shirt that was super neony and BRIGHT!!!

Isaac and his neon shirt!!!

One of the many things Isaac likes about camp … Crud wars!!!

Joe ( Isaac’s one on one) and Isaac.

Isaac and Janzen ( one of the special needs leaders)

We had many people help me sending not only Isaac but Brendan as well to camp!!

Brendan in the back with orange shorts.

Madi also went to camp but I didn’t get any pictures of her 😦

Our oldest, Lucas has been serving at Lake Ann Camp in Traverse City. I was sent sent these treasures …..

Lucas is on the left:) his campers buried him!! πŸ™‚

No clue what is going on here but it looks like fun!

We want to thank many who helped with travel expenses, or needs for camp, or the actual camp fees. We are extremely grateful.

Next year the program is a bit different and it will include Isaac helping with service projects around camp, it could be cleaning bathrooms, or whatever they ask of him! We are praying for wisdom as we work with Isaac day to day to prepare him for life and for next year at Springhill camps!!!!

~kathleen

The New Normal

It’s 3:39am and I can’t sleep. One of the joys of PTSD. Sometimes it’s nightmares that awaken me. Sometimes it’s anxiety or hypervigilence.

I’ve been living with PTSD for almost 9 years now. So, in some respects it’s not really “new” to me. Yet, as I look back on my almost 42 years of life, it really is something that I’m still getting used to. It still catches me off guard. I still have times that I may think I’m doing ok, but PTSD has a way of slapping you in the face and reminding you that things are definitely different now.

I’ve described having PTSD as living with a tornado. It’s a violent twister of feelings and emotions. It’s a whirlwind of depression, anxiety, anger, guilt, hypervigilence, rage, and confusion. However, unlike nature’s tornadoes, this one never ends. In fact it follows you everywhere you go. It sucks you in and controls your life. Then it spits you out, leaving it’s devastating effects behind. Only to follow you once more and start the whole process over again.

I’ve cut out a few medical snippets that help describe some of the things I live with:

I know it’s difficult for the general public to grasp what really is PTSD. I hope my definition and the articles I’ve posted here help your understanding. I don’t really know why I find it so important to share this information with others. I think it may be as a way to try to get others to understand why I am the way I am. For those of you who knew me before October 13, 2009 it’s a way to explain why I’m so different now. In a way, the man you knew before has indeed died. What you have in me now is what’s left… The new normal.

-mark visscher

AFO’s

Hello there!!!

Wait, did you think I said UFO? Nope, not about UFO’s!

This is an update on Isaac and his Ankle Foot Orthotics!!

Isaac and I took a trip to Grand Rapids today, ( one of my 3 trips to GR this month) to pick up his AFO’s.

On the ride there, I quickly discovered that the cord to connect my old iPhone to the stereo didn’t work, Isaac was pretty bummed that he couldn’t listen to his music on the way to GR. However, we did manage to get it going later in the trip and Isaac sighed with relief and said thank you Mom!

So we drove in to GR, it takes about an hour, depending on traffic, to get to the place where we needed to go. He really did well. Once there, it was pretty busy and there were limited chairs, an older lady pointed to the two remaining chairs near her and said these are open… Isaac said oh thank you! And plopped down!! Then they were behind as some of those kinds of appointments take longer than they can predict!!! Plus their computer system was messed up, nothing they could control so we practiced patience! So we waited at least 30+ minutes in the waiting room! Isaac did great, other than he kept yawning and then others caught on and we all laughed about it! To keep him occupied I handed him a book from the kid play shelf beside me. He read The Foot Boot and The Alphabet Book. Sort of aloud. He tends to mumble or start out in a clearer tone then drops his voice. But he was visibly reading and following along with his finger. The older lady beside me called him a “nice young man”!! Warmed my heart!!!

But considering he normally does not do waiting well,…. He did fabulous!!!!

We got into the room and the specialist marked a few areas that needed adjustments and he went to work on that and that took at least 20+ minutes. When he returned Isaac and I were almost asleep in the room! The AC turned itself off, so remember those yawns earlier?!? We were both fighting yawning and nodding off!!!!

Anyway, once we got the orthotics on Isaac we had him stand, it did affect his balance, like we expected, but he was ready to try them out! The biggest issue is the shoes!! The ones he has are from Christmas but they are worn down on the arch side of the soles… as that is how his feet curve…

Look at this picture, look at his foot… Can you see the way he almost walks on the arch side of his foot??

I know it is a little tricky to see because it is dark down there….

Anyway, the specialist encouraged us to try a new pair of shoes as that would help the AFO’s be most effective. I got all excited thinking it I have a new pair at home I can use for him… Oops, they are size 13… He needs a size 14!! And AFO’s take up a lot of room!! Check out the following pictures out:)

So, some have asked why we do a fundraiser…. One reason is to help Isaac go to camp. So far his way is paid and we are trusting on gas money as that takes 2 trips to drop him off and pick him up! From Muskegon to Evart MI ( Springhill camps)

And now he needs a new pair of size 14 shoes! He will gradually build up endurance to wearing them, to make sure he has no sensitive areas, no where where the skin is rubbing raw. So far today slightly pink but nothing bad , of course it is 80+ out and humid as all get out and most people have pink or red feet for a bit once they remove tennis shoes in weather πŸ™‚

I try to be always aware of that as he does not tell me they hurt, or if his feet are tired… And if I remember correctly, he tended to tire more easily for a bit while he adjusted. Today, stairs were slightly tricky and his gait was a bit abnormal for him. So we will keep an eye on that and see our chiropractor and in a week we will do a short video and send it to the specialist! It will save a trip to GR for a consult, if he feels it is ok, we stay home. If not then we can schedule an appointment!

As you think of us. Pray for Isaac. I was just so impressed with him today. He smiled and said a clear hello to the specialist!! They have been working on greetings at school and in therapy! And when it was time to go Isaac told him thank you!!! Then he told the ladies at the front desk good bye in his sweet voice!! We made a few stops on the way home but I know I am exhausted and I really have not done too much other than sit today! To drive, to sit in the waiting room, or when I stopped to say Hi to my Brother:)

There are so many of you who do pray faithfully for my family! I cannot thank you enough for taking my family before Jesus!!!

As you continue to pray, some of you may be able to help financially. This summer we had hoped to purchase a family zoo pass for the John Ball Park Zoo in Grand Rapids, we considered a family pass because it will pretty much pay for itself in one trip! And we try to go to a few zoos if we have the pass. There are 2-3 others around that we have gone to in the past, we have driven to the Binder Park zoo in Battle Creek or to the 2 zoos around the Lansing area. We are also looking into the many free options around Muskegon this summer!!

Recently someone asked me about something Isaac likes to do but maybe we can’t afford… I laughed and said, well, he loves to go to Goodwill, Dollar Tree, Five Below. Wesco for slushies, and Family Video for movies πŸ™‚ around his birthday we ration out his birthday cash and allow him to buy some things he thinks are fun! But then after that is gone, we tend to have problems helping him understand that his money is gone! He thinks his wallet just automatically refills!!! He isn’t trying to rip us off or anything, he just truly doesn’t understand that we don’t have extra to just toss at him every day when he goes out into the community!!! And some workers help him work on that and explain, we are just looking! Others can be push overs and let him get a slushie and they pay for it…

Anyway, this is about all I know from today’s adventures:)

So thankful for safety while driving! Isaac has in the past banged on windows or the dash and that is very distracting. At one point, I needed to watch traffic to pull out from a parking lot onto a busy road and he was doing his hand stimming and it was blocking my view, I calmly said, hey bud, I can’t see through you and I need to be able to see so I can pull out, are you able to keep your hands out of my way for a minute? He sat on his right hand!!! Some of you who work with him will get how huge that was!! Once I pulled out I said oh Isaac you did great thank you! He giggled and made his happy noises! Just two years ago it took at least 3 of us to hold him down while he had violent meltdowns and was self injurious and also damaged a great deal of property. Moments like this today when he sat on his hand in an attempt to stop stimming….. , it blew me away!

This heat is tough and we are thankful for the 2 window AC’s that we do have! And yes we could use more but boy, are we thankful for what we have πŸ™‚ and for fresh, clean cool water to drink! Perspective!!

Thanks for taking your time to read and to pray! If you do feel led to give… Our PayPal email is kvmoose@yahoo.com

Thanks and Have a great evening:)

~Kathleen

Mental health awareness lives here….

*this post was written a few days ago and we have prayed over whether to share or not…. We are sharing.

No clue where to start. So so very much has been bouncing around in my head… Before I get too far in, this is Kathleen writing.

We got through April which is autism awareness month. You know when people who care and may love our kids make a big deal about autism awareness or share a post or whatever, but they don’t really get what it is like May 1, when all the hoo haw is done… They don’t get what living this life 24/7/365 is really like. The good moments are so exciting and I know personally I try to post those moments! But it has gotten harder to get any support or encouragement when things hit the fan. ( Or kick the wall) Just when we feel like we have made such progress with one kid, another kids behaviors reveal we have way more intense work to do. And I am not giving up here. But I am waving my white flag. Ok, not really waving it, I am too exhausted to do that. I am kinda propping it up while I duck my head to cover the tears and the look of complete bone crushing exhaustion….

Wait wait, people may say, didn’t you say Isaac is sleeping better? Yes, as a letter of fact, right now he is.. for how long I never know and summer and breaks are ahead and the night wakings and schedule flops return. But in this moment while he is sleeping better, why am I not well rested and refreshed? Seriously??? Really?? Do you have any clue what it is like in my home for me? No, I am not seeking pity or a pat on the back or anything. Just bearing my heart… After years of intense care providing for multiple kids with special needs, many many health issues have been poking up this past year for me.

I am struggling to regulate my blood sugar, stress plays a role in my meal schedule and my blood sugar readings. My blood pressure… It had been low, like really low was my normal. Then gradually went up. Low grade meds for a bit then in the past few months, meds have been doubled once, then doubled again… And I still get high readings. The living in constant stress no matter how hard I try to breathe or choose to calm myself. Much is demanded of me and sometimes, my telling them to take a deep breath and helping them walk through calming techniques is the only way I can actually apply what I know, and outwardly things look calmer for me but inwardly, I know my stomach is in knots and my heart is racing and pounding in my ears. And anxiety for what might happen next, all the while mentally thanking God for getting me through what I just walked through two seconds ago….

Much is demanded of me. Didn’t I choose this life? Parts of it! I walked into my marriage praying God would give me children. Because from my teenage years, that was what I felt God was calling me to… To motherhood. We didn’t plan or expect the bumps and detours we would face. 16 years ago after I delivered Isaac, I recall at about 6 weeks, how horrible I felt, I was facing my worst stretch of post partum depression ever. And nursing Isaac and getting him to sleep was a real challenge. A very dear friend came along side and we sat there crying and nursing our babies while our other children played in another room.. I recall from birth that something was different… I have no clue why Isaac has autism. I know that God allowed it and He is walking with me, many times carrying me as I am too weary to walk.

May 17, 2007…. We heard the words we already knew were true. “Isaac has autism”. Never did I think I would later have 3 children diagnosed with autism. Several with ADHD. Several undiagnosed with ADHD. One with a severe mood disorder. Never did I think when we found out we were expecting our youngest how our world as we knew it would be turned upside down so drastically…. The phrase “the new normal” doesn’t fly with me. I am not sure I ever really knew what normal was!!!! ( Feel free to take that however you’d like!!) But my daily life was so different from my friends, my family, my husband’s family…. My church friends…. I felt so alone…I never could have predicted what “in sickness and in health” would look like and of course mental health issues are looked down upon in many a church. Depression was declared sinful because you just didn’t have enough faith… And how can you be so down if you truly believe in all Jesus has done for you??? Well, my reality is daily, moment by moment walking with Jesus and still feelings, ups and downs of emotion and stress. And depression. My post partum depression was treated as that until a few months after our youngest was born. I hit a crossroads. I was trying to care for my husband who was in a very very dark place, after the armed robbery that left him physically fine, but left him otherwise, not himself. I never knew that one could have PTSD for anything other than war. But when nightmares and day terrors/ panic attacks rage on, in the midst of crying out to Jesus. Fighting to get my husband the help he needed while he was terrified to leave the house was beyond difficult. All the while caring for the kids. Most of our kids do not fully grasp why dad can’t work, why sometimes dad has to leave the room because it is just too noisy and overwhelming. Or why dad doesn’t feel comfortable playing catch outside… ( Thanks to the former company he worked for having him followed and spied on….) So, caring and loving my crew takes a special person. I had no idea that my dream of motherhood would look like this. No clue that I would go from us living comfortably financially and being able to budget well and take care of any debts and get food or clothes whenever we needed them to accepting any hand me downs… Finding food trucks and food pantries to make ends meet and being creative in the kitchen to make that not show for the kids…. And God has led many people to walk along side or those who say, here is money for this kid to go to camp… They say “We love you. We don’t feel we can help in another way but we can do this….”

God has used many people to walk into or pass through our lives to deliver many blessings. Many needs have been met in the most awesome of ways!! Oh the stories I could share of God’s perfect timing!!!

But in spite of God’s awesome provision and carrying us…. I am the one to juggle the menu and food shopping. We are faced with growing kids and a disability income that while it is a lot for many families for a family our size… It is very tight.

I never thought I would be in a situation like I am today. In two short years, we will be filing for guardianship of our Isaac. He has made so much progress but independent living is not in the books for him. There is just something so precious about that boy. So unique and while wired in a special way, he is just perfect the way he was created! God placed Isaac ( and his six amazing siblings) with Mark and me. God knew all that was going to happen to lead to this very moment in time. With therapies, doctor visits, counseling, and meltdowns and holes in the walls, with shoes with holes and no soles ( literally) with poor health and the need for me to make noticable changes to take care of myself so that I can take care of the people in my direct care. While I envisioned a table full of children, laughing and happiness flowing around my table. I am faced with meals where someone says something ( not even anything bad or hurtful) and someone else takes it wrong because that is how their brain is wired…. And my plans of a peaceful meal are turned into kids dropping in tears or throwing dishes or food or hurtful words and sometimes kicking or hitting walls…. Nothing like I planned. And as awesome as I am, I have yet to master calmly dealing with everyone at once in those moments!! ( Not really ever gonna happen!!) We work with whomever we can when we can and when they are hopefully most receptive to direction or redirection.

I never thought I would be reduced to gushing tears even while I try to breathe them away…. the weight of what we face, what I face daily is mindboggling. At times the comments below are encouraging “wow, I could never be as strong as you” or I” could never do what you do.”.. But at other times, it feels like a sucker punch. There are times I go running to Jesus telling him that I can’t do this and I dump it all at his feet…. Then some well intentioned person asks why I am not doing this or that, and that surely if I did it this way, it would work way better.

I am past the point of processing life in a timely manner and even with my best intentions at planning and preparing and budgeting or whatever…. Life still seems to pile up on me and I feel like I am crushed and suffocating under the weight of all that is demanded of me on a daily basis.

I have no great finale to this in mind. But as I listen to our Isaac giggling and squeal in delight to the Veggie Tales video is playing and rewinding and playing again…. And again…

I just want to say, I never ever know how to respond to “hey, how are you”? Because there is the simple answer of I’m fine… Or oh you know, tired…. But I struggle to be bouncy and overflowing with laughter and that mindset because so much of my life is focused on how to avoid the next meltdown and how to keep everyone safe, clothed, fed and most of all well loved.

Today my heart is aching. There is more on my heart than I could ever attempt to corral and throw into black on white….

Today I am simply being real in the moment …. I am struggling. There is no perfect answer. There is no “magic wand” to make it all perfect in someone else’s eyes…. My world and I my family…. We are who we are. I know for me….I am broken, seeking Jesus in every step that I take….

~kathleen

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 πŸ™‚

~kv

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 πŸ™‚ 

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 πŸ™‚ 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. πŸ™‚
Thank you for your prayers and love for my family:) 

Blessings, Kathleen