Hey! It’s been a while! I logged in this morning and realized my last post was back in March after our best vacation ever! Do I have an excuse? Not specifically. Life is busy – give me a break 😉
So here we are…
September. There I said it! Usually I am filled with a small bit of excitement, guilt and anxiety as I head back to my classroom each fall. I am anxious of the unknown, I feel guilty for having to leave the kids – especially since Tucker keeps asking me to “stay at Tucker’s house and no go work”, and lastly, excited to see my students again and get back into routine because I really do love my job. This year I have a little more excitement as I start a new position. Still part time, but I’m leaving the middle school and heading down to K/1! Best of all, it’s still part time and I’m sharing the class with my sister – cool eh??
But I’m not the only one taking on a new job this year. That’s right, Ledger is too. My big boy is heading to Kindergarten! This week we were lucky enough to go to the school to sit with his teacher, EA, principal, and resource teacher. We discussed some of our concerns and most importantly, put his allergy policy in place. We left the meeting to pick up Ledger and bring him back to the school. He was able to see his classroom, meet his teacher and meet his EA. He was very calm, and responded well to the new environment. He went for a walk with his EA around the school and she even got one of the world famous Ledger hugs! I think she’s under his spell already 😍.
On Wednesday, the special needs bus will be picking up our sweet boy. Mama has to work so Daddy duty is in full force. Don’t worry – he has been given orders on specific photos that need to be taken! Ledger is starting a new chapter. I pray it’s not too much for him. I hope the kids are kind. I ask the teachers to be patient and flexible with him. But most importantly I hope he smiles and laughs. He is a fun and loving boy and if he shows this to his new world, everything will be okay. Go get ’em buddy 💙
As we sit here on our couch, watching another movie because we’re trapped inside during another snow storm, I can’t stop thinking about our best vacation ever! Just over a week ago we spent 7 days in sunny Florida and I truly believe that’s where we are supposed to live!
So what made it the best vacation ever? It was full of relaxing family time. For some of you that might sound a little boring but we very rarely get to relax with Ledger. He is always keeping us busy as we need to change activities often due to meltdowns and lack of interest. We spend a lot of time trying different activities that he might like, or buying different toys that he might want to play with a time or two, but normally he shows very little interest. We spend most of our days travelling back and forth in the car going to and from intervention, eating, watching movies, and trying to do small amounts of seat work while working speech and OT exercises into all of the above. Ledger spends his day pacing through the house with spuratic vocal outbursts. He has emotional mood swings that can change at the drop of a dime. He is constantly looking for food which we feel is usually out of boredom. He has eczema and scratches himself until he is sometimes bleeding which leads to a meltdown due to irritation.
In Florida, we didn’t see those behaviours like we do here at home. Why you ask? We asked ourselves too. He was so content. So at peace. Swimming is definitely his thing. He loves it – and he’s really good at it! He (not kidding!) even smiles underwater! It is his happy place being outside in the pool. After supper we would walk down to the playground every night where he would play happily on the slides and swings. And bed time? What a blessing…he went to sleep great, and stayed asleep all night! Minimal vocal outbursts, he wasn’t looking for the snacks that he wants at home and he spent so much time smiling! When we’d run out for an errand and drive back into the neighbourhood he would let out shrieks of joy in the backseat just knowing that we were heading back to the pool house again! The combination of sun, fresh air, and exercise was such a great combination. Not just for him, but for all of us 🌴☀️.
I write this blog for many reasons. I write for awareness, and to let people know some of the ups and downs of autism. I try to stay positive and focus on mostly ups, but getting a few downs in there helps to paint a real picture of my unexpected life. I write it for other parents, because whether we have special needs or neuro typical children, we all share that crazy unconditional love for our little ones. I write for my boys, so they can remember the great times we’ve had and the rough times that we’ve overcome. I write for myself, because often people run into me and ask “how are things” and unless they have a lot of coffee, a chair, and a few days… they aren’t really going to find out how things are!
When I first started writing a year ago, I got excited that some of you were following my blog. Your kind words and support encouraged me to keep sharing. A friend sent me a message the other night saying she overheard two mothers at her child’s music group talking about ‘Ashley’s’ blog. She said they were speaking very kindly and she felt that I had truly impacted them based on what she could hear. I run into people that I haven’t seen since high school (which now is over 14 years ago!) that say they think of us often and enjoy following the blog, even though it makes them emotional at times. I’ve heard that I’m brave, and courageous, and strong, and all of these words are so kind and thoughtful of you.
Last night while I was at my moms for our weekly Sunday dinner, she spoke to me after everyone else had left. She told me that she had been approached by a group of people who wanted to help us. They weren’t sure how but they wanted to do something. I tried to keep it together, but those super-power crazy emotions kicked in and I let some of my famous crocodile tears fall. I’m not sure what to say other than we are swelling with emotions at such generosity and kindness. We know people, friends, and family, think of us often and everyone offers to help “if there is ever anything we need”, but Jeff and I are both so very touched by this offer. We are so thankful for the special people we have in our lives and we hope they know how much we appreciate all of their love and support.
Final thoughts: Tonight, before bed Ledger was listening to some music. He was marching around carrying his leap pad up on his shoulder like a boom box. The music is closest to his ears this way and he had a huge smile on his face. It was a song from one of his cartoons he likes to watch. As I danced with him in the living room we giggled and I listened to the lyrics:
“When trouble comes my way
No matter night or day
I know my family’s gonna help
And make it all ok”. 💙
We are so blessed…
We usually start our day anywhere between 4:30-5:30. This morning it was 5:30. Ledger was awake and he had gone into our closet to hang out. He likes it in there. He looks in the mirror and sits on a bunch of overnight bags that somehow give him some comfort. This morning though, he climbed into bed with me and was cold. His hands especially. And he smelled like raspberries. He had gone into the fridge, took a yogurt (yes he’s allergic to milk, and no it wasn’t a dairy free brand) and ate it with his fingers. We quickly got some Benadryl into him and gave him a shower. No hives, no itching, no throwing up. A few months back he had gotten into some peanut butter ice cream and did all of the above. Its my day off so I kept him home from intervention this morning just incase he had a delayed reaction. So far, he seems great and is jumping on the couch while watching Toupie and Binoo (his fav cartoon right now!). He loves jumping – we even have our couch cushions duct taped where he has worn them out! Check it out – how can’t you smile?
I’ve been trying to write this blog for two weeks now. It’s not a fun one, and more than once I have given up and walked away from it. Today I read a post from Autism Daddy – a blog I follow and it made me get my butt in gear. Check him out when you get a chance: autism daddy His son seems a lot like Ledger, and he posts a lot that we can relate to. I’m always saying to my husband “listen to this!” because he seems so comparable to Ledger. I’m guilty of what he’s saying today though. So many stories on autism are always happy or heroic or successful individuals. But that’s not the only side to the disorder. I do try to lighten the situation because I try to be a positive person and see the best in each day and situation, even though sometimes that seems like an impossible task. Often after I read feedback from you, I feel like I’ve softened the story to make it seem like we are calm and very manageable. That’s not always the case.
Today I’m jumping in with two feet. Kindergarten orientation. Not so manageable. And the farthest thing from calm. We tried this last year and we were actually more successful then than we were this year. Ledger was very agitated as soon as we arrived. He didn’t want to sit down. He didn’t want to wait for the activities to begin. And he didn’t want to be in a new gymnasium full of new people. I tried to get him to sit beside me. This only resulted in screaming and throwing himself on the floor. I tried to get him to sit on my knee, which resulted in flapping out his frustrations – directly on my face. Yes we had visuals. Yes we had fidgets. No, he was not cooperating. Did I mention this was before they even asked him to do anything?
We quickly escaped the gymnasium, Ledger screaming, and me, shamefully wiping tears from my face. Jeff was trying to help him walk out his feelings. His ASW was trying to show him some visuals and I was trying to get it together. A kind teacher at the school showed us the sensory room and told us to take as much time as we needed. So sweet of her! Ledger did seem to decompress. However, he was not working up the courage to go back into the gym. Again with visuals, lots of prompting, screaming and even more tears from mama, we got little bits of time in the gym followed by longer periods of time in the sensory room. We did this for about 45 minutes and decided that was enough. I didn’t want to put him through anymore and to be honest I couldn’t get it together myself so I needed to get out too.
New things are hard for Ledger, and for us. If it’s hard on him, it’s hard on us. I hate seeing him get to the point that he needs to slap his hands against something to get out his frustrations. He didn’t hurt me physically but he crushed me emotionally and mentally because I couldn’t help him. I couldn’t explain to him what was happening and he couldn’t understand why he was there. The teachers were very kind and did not push him in any way. They gave us the space we needed and were very understanding when we left early. I’m sure their eyes were opened and so were some of the other parents and children in the room as well. It’s awesome that they have a sensory room that is already set up so that if he needs a break he can go. But it’s still hard as a parent to mentally wrap your head around the fact that he’ll be there in a small secluded room while his classmates will be learning new skills and building new friendships. I know, that’s probably making me sound pretty selfish to think that right?
It doesn’t matter that we’ve been living with this for 3.5 years already… it’s not getting easier. I’m a mom…and just like any other mom, when you see your child is uncomfortable, unhappy or just very frustrated with something, you are going to share those feelings. The difference is, you may be able to communicate with your child and calm them down with reassurance. We don’t have that luxury with our boy. I’m very scared for next year. More scared than I was with the initial diagnosis. Because I don’t know how he’ll react. And it’s the unknown that’s so scary. I pray and I know that the teachers will be professional and accept him just like they do with all children. I pray that he will become comfortable in that new environment and that he will be treated with respect from his teachers, workers, and classmates. I pray that they will meet the sweet side of him that we often (but not always) get to see at home. But most of all I pray that he will smile, which he didn’t do at his orientation.
I just received this email from wordpress.com, the blog host. I love the stats they have given me! 41 posts this year, 7,300 views and 22 countries! How’s that for autism awareness?! Thanks everyone! Our journey continues in 2015…
The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.
Here’s an excerpt:
A New York City subway train holds 1,200 people. This blog was viewed about 7,300 times in 2014. If it were a NYC subway train, it would take about 6 trips to carry that many people.
Click here to see the complete report.
Today Ledger had his first Christmas concert. It was for his preschool program that he’s in. There were 36 children and if I had to guess, then I would say about 100 guests!
His teachers we’re so very accommodating! They asked for any pointers or helpful hints that may help him through the morning; they were more than accepting when I asked if we could wait until show time to arrive so that we could eliminate waiting periods; and they even saved us a seat at the front incase he needed an escape off of the stage. They’re all so kind and considerate!!
All of the children came out on the stage together and Ledger waited with his support worker until the other students were all lined up. He stood off to the side and down off the stage, holding on to a Mater dinky car, and smiled as he heard his new friends, and some cousins, sing along to three Christmas songs. His support worker held him close, got him to wave to us he even got him to stand up on the stage for a short time.
I’ve got to be honest…I tried hard…and I very proudly and successfully swallowed the lump in my throat and the tears in my eyes. Having a child with autism as their super power, means mom has a super power too. It’s called super-duper-roller-coaster emotions. They’re uncontrollable and super unpredictable. It’s heartbreaking to see that he can’t tolerate being on stage because he can’t stand still. Or that he can’t sing along to the lyrics with his cousins and his new found friends (who are so happy to see him every Tuesday and Thursday morning) because he can’t find the words to sing along. Or maybe because during Christmas you see the excitement in the other little children’s eyes but he can’t understand the magic of the elf on the shelf, or of Santa, or the joy of gifts, because his brain doesn’t allow him to display that sense of wonder and imagination.
But those crazy mom emotions are diminished by even greater ones. The emotion of pure pride, and joy, and love! He’s my boy :). I am so proud that got up there on stage, and that he stood in front of a room with 100 loud parents with bright camera flashes, and a strange man in a bright red suit with a large white beard! He very easily could have froze at the door and not gone in. Or maybe thrown himself on the stage, or even worse hit his support worker because of sensory overload. But he didn’t. He was smiling! He was happy! And that is what gave me the lump and the tears in my eyes. I held them back, and I will many times over the holidays through the up and downs of the Christmas season. But if you do see a tear fall, or almost fall, look at Ledger’s face instead of mine. He’s probably smiling and my tears are only a display of that pride, joy and love we all have for such a sweet little boy.
This morning I had a follow up meeting with Ledger’s intervention team. I walked into our scheduled meeting the there were only two people there. Our clinical supervisor and his speech therapist from intervention. The meeting started as usual – with me stating any concerns or requests. I told them the only thing that I can seem to think about lately. The one thing that is consuming my life – September. They nod with an extended blink and give me the yes, we are trying our best smirk. The mood is quite somber and I am expecting them to say that they are prepared to try their best but that he may not make the gains he needs and that other children can make…
But instead, the clinical supervisor sits up excitedly and begins to speak. She tells me that although Ledger is not making huge gains, the smaller steps are starting to show. His engagement is improving, his vocabulary is expanding, he is showing more personality than before, and is even showing excitement towards his peers. For many parents, this is so easy and expected of children. But for Ledger, all of these things have been (and continue to be) so difficult for him. It was so awesome to sit and hear some positive comments even if they are the smallest little gains.
Since our diagnosis 3.5 years ago we have set up quite a team of professionals from ASWs, intervention specialists, OTs, SLPs, preschool, and of course our family and friends. We all want the best for Ledger as we are all working towards that goal of trying to get him prepared for school in September. Often times I wonder if I am pushing him too hard. It makes me reflect on my expectations and I often feel guilty that even though I have provided so much support he isn’t getting a lot of time just to be a kid. I get looks, I get eyes rolled at me, I get stares. I ask a lot of him and I am very strict with him but only because I want better for him. I want to make sure he can make all of the gains that he can even if they are the tiniest gains and expectations of neuro typical children. He works hard, and so does everyone else on our team and I couldn’t be more proud of who he is and all of the small gains he has made.
Friday was your last day working with our little boy. We have been with you almost everyday for the past 15 months. You have seen the ups and the downs. The happies and the sads. The gains and, unfortunately, the losses.
The first day we met you were firm and you were bold. I wasn’t sure how Ledger would react to you. I wondered if you would be all work and no fun. I wondered if he would listen to you and if you could help him make any gains. I wondered a lot, and wished even more.
You have been beside him to try to make each day meaningful to him. You helped him with engagement. Everyday you worked with him and did your best to come across more interesting to him than the exciting world that he is so often lost in. You helped him through his first round of kindergarten orientation. Even though we didn’t follow through, it was a good learning experience for him. You helped him to learn about his little brother since you have been his worker since the day Tucker was born. You helped him understand how important it is to be a big brother an how mommy and daddy need to share some of the time that has always been his. You have been such an influence to Ledger in so many ways over the last year.
Picking up Ledger on his last day with you made me realize that he also made quite an impression on you. As you wiped your tears, you told me you were struggling with separating from him. You snuck some change into my pocket and told me to buy him a smoothie, because you know those are his favourite. You gave him a hug, and although he didn’t show it, I felt the connection between the two of you.
Yes, in the beginning I worried and I wondered and I wished, as any mother would. And you did nothing but your very best with our sweet boy. You did such a wonderful job. You were bold. You were fun. You were strict. You were loving. You made a difference in Ledger’s life and for that, we thank you!
Well I’m back to work and have had almost zero time to myself. I thought I’d take a few minutes to update you on what’s been happening with our family lately.
Busy busy busy!! I’m back to work after being off with Tucker for a year and boy is it busy! Thank god I only work three days a week because I’m pretty sure I’d have a mental breakdown if I didn’t. This year, I am working Monday – Wednesday. When I go to work, Tucker goes to a great home on my way and gets to play with another little guy who is only a week older than him! We’re so glad that he gets the socialization with a child his age. He’s happy to be dropped off in the morning (it took a few days of tears haha) and I know that he’s getting great care :).
Ledger’s schedule is busier than ever. For the past 2.5 years, Ledger has been going to intervention every morning from 8:45-12:15. As most of you know, this year he should have started kindergarten. But with an October birthday and his additional issues, we decided to keep him back for the year and give him the most that we could offer. When mama goes to work, Ledger is looked after by his grandmothers. They alternate days and are so helpful to run him back and forth to wherever he needs to be that day! Ledger is still going to intervention on mon, wed and fri mornings, as well as tues and thurs afternoons. This change was made because we got him into a fabulous little preschool program! He has a full aid (thanks to mama filling out quite a bit of paperwork!) and he seems to be enjoying the social setting as well as the letters and numbers.
On Wednesday evenings we have private speech come to our home. She is so patient with Ledger and always tries to find something that will spark his interest. She’s even teaching him some sight words and Ledger’s interest for reading is on the rise!
We also have private occupational therapy coming into our home about once a week. His OT has a ton of energy and it’s contagious! You can tell she has such a passion for working with children and seeing the best in everyone. We’ve been working hard with her to set up the best program for Ledger’s sensory needs so that he can have everything he needs in order to have a great day!
Every other Friday we also have early intervention come to the house. This is a free service (can you believe it!!?!?) through FACE which stands for Family and child education. She comes in for an hour and brings activities for Ledger to do which help him with engagement!
Ledger also just started his Making Waves program again! For 1/2 hr on Sundays he gets one on one swimming with a volunteer med student. This is by far his favourite therapy of all!
At the end of the day some nights he is exhausted, as are we! But he is doing great accepting all of these new people into his everyday activities. In just a few weeks we’ll be heading back to the school to register him for kindergarten again. He wasn’t ready to go this year, and he might not be ready next either, but we’re doing our best to offer him every opportunity to prepare him for next year and the challenges to come.