Fall Update :: Mommy

:: Mommy ::

It has been a very long hard year. But very rewarding. I can not believe how much my life has changed in one year. It seems one year ago was forever ago. But at the same time it feels like it was just yesterday.

A year ago, autism was just a word. A diagnosis that meant very little in my own life. I did not even know what it really meant. It was just a word. A year later, while I still know very little about autism in the grand scheme of it all, my life circles around this word, around this diagnosis. Around my child with autism. Some days I still do not believe it. I just want my old life back. Not to say that I would trade this life in for another. But I miss friendships. I miss having time for me. I miss being a typical parent. I wish I could understand my child more than I actually do. I wish my life was not full of therapy. But I also hate living in the world of I wish and what if. This is the life I have been handed and I am doing the best that I possibly can.

I have to admit this life has become very lonely. I do not have time for friendships. The ones that I do have are because they are the ones who make me important in their lives. They are the ones that call me and text me. They are the ones that stand by me and walk beside me when I am having a bad day. That number has thinned a lot in the last year. I know it is because of me. I just do not have the time to give to having friends. It is sad, but true. This life has become lonely. I used to once meet with friends almost daily. Go for lunches or meet-ups for a girls night out. I can not tell you the last time I just met a friend for lunch or had a girls night out. It has been at least 3 months, if not longer. I no longer hear from many friends and it is always a sad reminder when I see that several of them met up and knowing they no longer invite me because I always say "I can't make it." So the invitations stopped. This life is lonely. My once social butterfly personality is now hindered by the life I have to live for my children, to make sure they get the best they can get. That is worth all the sorrow. The improvements that Marshmallow makes daily, makes every lonely, hard day worth it.

I have a busy life. But it is my kid's life that makes it busy. I spend hours stuck at home, in therapy or driving. All while Skywalker is also in tow. Every day is busy. Monday, Wednesday, Thursday & Fridays J is here from 1200 to 1600 for ABA therapy with Marshmallow. Sometimes I try to do somethings around the house, but for the most part I am involved regularly in this time with him. I am trying to pull more of his home school materials out during this time, so J can use them to work on various goals with Marshmallow. I have karate Mondays, Wednesdays and Saturdays for about 45 minutes with Marshmallow. Tuesdays are booked with OT and Speech, we do not get home till after 1600 most of the time. I try to schedule appointments for Skywalker while Marshmallow is at preschool from 0800-1100 Monday to Thursday. Sundays we go to church in the mornings. Fridays I bible study with a few ladies in the morning with the boys before therapy with J in the afternoons. Saturday and Sunday afternoons are really my only free time. The only time I have to get things really done around the house or take the boys out of the house. Until J started, K would come for therapy with Marshmallow on Saturdays, so having Saturdays open is fairly new. Not to mention we try to have family time in the evenings if possible once C gets home from work. So no, I really just do not have time in my day to meet friends any more. My life is crammed into these little 2 hours time blocks in the morning while Marshmallow is at school. Plus I have Skywalker still breastfeeding every 2 hours all day and night long. So even though I may be able to get away in the evening, with Skywalker in tow, I am tired. I am exhausted. Because I have not slept longer than 2-3 hours straight in over 2 months. Life is tiring and busy. I run all day long and still do not stop at night.

I feel like I have to explain why I fell from everyone's life in the last year. This is why. I wish I had time. I wish I could build those relationships or repair the damage done. Sadly, it just will not be happening. Not now. And not really for a while. It saddens me. I can not be the one to reach out, I need to be the one reached out to. I have learned who really cares. I know life is busy for everyone. But I was expected to drive to everyone and everywhere for so long, very few come to me. And right now the only way is to come to me. My day is stuck at home so Marshmallow can have therapy. I can not leave. I have to be here. It is my life. I wish others would really understand that. I know there are a few who do. I wish more did though. I am so grateful for the few who do get it and understand. For those that reach out to me and keep me grounded. They are angels in my life.

I have my saving graces. I have a couple of amazing mom groups and support groups that have been my outlet for the last year. I wish I could make more meet ups and build these relationships more in real life, instead of on line. But I will take what I can get. Many of these moms walk this same life. They also just do not have the time. Their lives are just as crazy and busy. I appriciate these women so much. I do not say it enough or tell them enough. But I appreciate knowing I am not alone. I appreciate every time they invite me out, or check in to see how I have been doing. Ask me how the boys are doing and how appointments and such went. I wish I could form these relationships more. One day I hope to have the ability to do so again.

So for now, this is me. I am still struggling with everything happening in my life. I mourn the life I once had. But am grateful for the life I do have. For the ability to be my son's biggest advocate. I know that without everything I have been doing and everything that I push to do for him, he would not have come as far as he has in the last year. Autism is for life, but we can make it the best we possibly can for him. I work daily to give him the best I can. I know some days I fail as a mom, and certainly fail as an autism mom. But I am still here. I am still standing strong for my son. I am standing strong for Skywalker too. I will be his biggest supporter too.

I am here, I just can not do it all. I have to learn to be okay with where my life is currently. And what everything that has happened in the last year really means for my life. It has been a roller coaster of a year. And I know this roller coaster will not be ending any time soon.

So for now I find my happiness in the small things of everyday life. The little things that make me laugh and smile. I have to find the joy in all things, not just the big things. Without it I would never get from one day to the next. I have to find a blessing in everyday.

Moments like these. Having a great day at the zoo with a sleeping sweet pea on my back. It is love. I will do anything for these boys because I love them so much. It is love.

Fall Update :: Skywalker

:: Skywalker :: 

Well, Skywalker is 6 months old. Half-way to his first birthday. I am not quite sure where time has gone or where it keeps flying off to, but it is going somewhere.

Skywalker is so different from Marshmallow in so many ways. He always surprises me. He does things that either Marshmallow never really did or I just completely forgot about him doing. Skywalker is hitting all his milestones with ease. He is actually tracking ahead and hitting many 9 month milestones already. He is currently on his way to becoming a furniture cruiser with all the pulling up and standing he is doing lately. He crawls now with gusto and sits himself up with ease. He loves to tell me stories, babbling all day long. He absolutely loves his feet and is constantly sticking them his mouth. He has the sweetest smiles and the cutest squeak of a giggle. Definitely stealing our hearts the same way that Marshmallow did.

Back in September, Skywalker had a seizure while we were spending time with family in NH. We are not entirely sure what caused it or why. We did take him to the ER just to be sure that he was okay and nothing more was going on with him. Thankfully, he has not had any more since then. We have taken him to a neurologist to have it looked into. They had him get an EEG to see if there was any abnormal brain activity. Everything thankfully came back normal. If he has another seizure they will repeat with a longer test. They will also want to do a brain ultrasound or an MRI pending his age. The neurologist has no concerns about it though as he is developing normally and hitting all his milestones. Typically a child that suffers from seizures will be delayed with milestones as it interferes with how the brain functions. So for now, we wait to see if it will happen again. 

Currently the only concern with Skywalker is his weight gain. He seems to continually be falling off his growth curve. He was originally a big boy in the 50-75^th percentile for weight. But lost weight from 3 to 4 months dropping him to the 15^th percentile. And at his last appointment he only gained a few ounces from 5 to 6 months putting him in the 5^th percentile for weight. We did a swallow study in October, as he chokes a lot while breastfeeding. The swallow study showed that he was not having reflux or issues swallowing. That does not mean that there is not issues happening, they just did not show on the test. We also had his lip tie revision done at the end of September. I was hoping this would help with some of our struggles that we are still having with breastfeeding. While it has gotten better, we are still having some difficulty. I am currently looking at getting another opinion on his tongue tie to see if it is worth having that released. As many of the issues I have having with breastfeeding are pointing at him having a tongue tie. The doctor that preformed his lip tie, did say that Skywalker has a tongue tie. That it is a deep posterior tie that did not seem all that significant, but after seeing a lactation consultant again yesterday, we think it is best to have it evaluated again. As it may be more significant than it is appearing to really be.

In addition to further looking into his tongue ties, we have also now been referred to a pediatric GI. So just waiting for them to call so we can set up the appointment. For now, I am just continuing to feed him every two hours and we have begun adding solid foods two times a day as well, in between breastfeeding sessions. We have a weight check tomorrow and another then he turns 7 months old in a couple weeks. We are hoping he will not continued to fall in weight.

Everything else is going grand with him. Marshmallow is really warming up to being a big brother and seems to sometimes enjoy having Skywalker around. Skywalker sure loves being a little brother and loves his big brother. He follows Marshmallow all over the room and tracks his every movement. It will be fun to see how they interact as Skywalker continues to grow. It is exciting watching their bond form. I have a feeling Skywalker is going to totally be the annoying tag-a-long little brother, the shadow that big brother really does not want to have. But at the same time I see Marshmallow totally starting to love on his little brother, he really thinks at times that his little brother is a doll for all his games. It certainly is fun to watch. 

  

Fall Update :: Marshmallow

It has been too long since my last real update. Life has just been busy with have two little ones to chase around all day long.

:: Marshmallow ::

As you can read in other recent posts, he has been doing amazing. We are constantly shocked at how far he has come in such a short amount of time. A year ago was when we really started on the this journey, and we were told that falls on the autism spectrum. It has been a never ending roller coaster since. I have not had much time to stop and breathe. We have just been chugging along, bulldozing it as we go. I just know I can not stop. And the results of doing it it all, is clear as day. No matter how tired or worn out I am in doing this all, every moment has been worth it. Yes, we have good days and we have horrible, no good, I want to start over days. Some days are just long and frustrating for us all. And for as much as it may be frustrating for me being a parent, I know it is just as frustrating for Marshmallow with all his limitations and not being able to to express himself the same way as a typical preschooler. But we all push on and keep moving forward. One day at a time, whether a good day or a bad one. We move forward. 

Back in September/October we lost our therapist. She no longer works with the agency we are using, so we had a bit of a break where we did not have someone coming for his ABA therapy. We still met with our BCBA//Hab-M to keep her posted on his progress and keep moving forward with his goals on our own, until we had a new provider assigned to his case. Well mid-October we got a new one, we shall call J. As soon as I was told that the new provider was going to be a male, I was stoked. Marshmallow has always like men better than women, even as a baby. I knew it would be a great pairing for him. And sure enough, within moments of J first coming over Marshmallow was dragging him all over our house showing him things. It took no time at all for them to build a relationship. J has a ton of experience in this line of work and has a sibling with autism as well. So none of this is new to him. We are definitely excited to have him working with Marshmallow! 

The first couple weeks was just doing some pairing and J seeing where Marshmallow was at on the currently list of goals. Just getting a feel for what all Marshmallow needed, while building that relationship. He was able to attend a party with us that a fellow austim family had for Halloween. It was perfect. J got to see how Marshmallow is doing socially and how he interacts with is peers in a relaxed setting. J also took some time one day to stop by and visit Marshmallow at school. To see how he is doing in the classroom setting and to hope to get a good gauge for some new goals there as well. After a couple weeks, he has started to work with Marshmallow on his current goals. It has been going very well. I just need to do better at helping to make that time better organized and have our day planned out a bit better. Right now a HUGE focus has been on Marshmallow adjusting to Skywalker being mobile and wanting to play in his space, with his things. Sharing is hard. So we have been creating some of this, to really force Marshmallow to work on this area. He does well on small scale, but lots to still work on. We also have tons of other goals that deal with communication and various skills. They are always changing as he meets the ones we are currently working on. Most of the time he just flies through his goals, making such huge progress.

6 months ago one of his goals was just getting him to label items. Like door. Not out of need or want. Just to label things in his environment. Now, he tells me "Butterfly outside", "Skywalker crying", "Clouds raining" making all sorts of observations and wanting to share them with us. We have always been working on using words for needs and wants as well, and have gone from 1-2 words for these requests to full sentences. Sometimes needing prompting, but he always gets it. He will say "I want popcorn, please." And if I do not put butter on it. He will ask for butter. Or ask for a bowl to put it in. He is filling in the missing gaps. Asking for what is missing. He has just come so far in 6 month with his communication skills.

Another big change has been in his social skills. 6 months ago he needed someone else to initiate play with him and keep him engaged. Now not only does he fully engage with his peers on his own, he also initiates play with his peers. He will grab a hand or tell them to come. He has a sparkle when he plays with his friends now. He also pretend plays a ton more. He takes everyday activities and puts them into play. His imagination has gone wild. He has a blast when playing with his Legos or his Little People. He makes up these big scenarios and plays them out. He also knows the names of the friends we see regularly and gets excited about seeing them when I tell him that we are seeing certain people that day. This is not the same boy from less than 6 months ago. 

Last month we decided to add in Occupational Therapy to his schedule. The main reason for this is for Marshmallows sensory issues. As his communication and social skills have flourished, we have noticed an increase in sensory behaviors. This is very typical. Lots of ebb and flow in the autism world. Steps forward in one area and steps back in another. Marshmallow has been stimming a lot more lately. Such as the arm flapping, spinning, and jumping. He also is having harder times focusing in crowded areas and is bothered a lot more by noise. He constantly covers his ears and tells me things are loud. He hates when I run the washer machine or dryer with the laundry door open, as it is loud. He will go shut it or tell me loud covering his ears. So at OT they are helping him manage when he has sensory overloads. They are working with him in the open gym area focusing on an activity while he wants to bounce around to everything else going on in the room. They have him doing some fine motor skills as well to just help fine tune some of them, especially in the personal care area. Such as putting on his shoes and socks. So for now we have added an hour of OT a week into our routine. 

He has been chugging along at speech therapy as well. He has been doing fantastic. They have him working with another little girl during his sessions to help with the sharing and social skills some more. It is good for both of them. We have talked about adding in feeding therapy at some point as well. But we have found some things that have been working to get him to eat different food. Even if just one bite at a time. It is a start. So we are putting that on hold to see if he really needs it. 

Preschool is the last piece that we have been working on. He is doing amazing. You can read more about school in this post :: Fresh Start - Preschool. In short, I am so glad we decided to pull him from the public school and put him in a typical private preschool. He is doing amazing. I know he is behind his peers in what they are learning, but he is learning. He is gaining so much from his classmates and his teachers. He has a great support system there. I know he would not be doing as well if we had decided to keep him in the public school.

In addition to sending him to preschool, we have the ESA (Empowerment Scholarship Award) to use for his education. I decided to get a ton of things for us to use at home to allow me to do some home school preschool with him. I have so many of the same resources available at home that they use with him at school. It is wonderful to be able to reinforce his learning at home. I try to spend a little bit of time everyday doing something with him. And do a bit more on Fridays, Saturdays & Sundays. I am always looking for new resources to get for us to use at home. Things that target his current goals in ABA, speech and school. Right now our big struggle is colors. He is just not grasping colors. So I have been doing a ton to help him work on knowing his colors.

Overall, I can not express enough how proud I am with Marshmallow. He constantly surprises me with new skills. It is amazing to see.

Zoo Adventures

We love going to zoos. Even before kids, we enjoyed going to different zoos. I can not even tell you how many zoo trips we have done in the nearly 4 years of Marshmallow's life. I even had a zoo membership in 2014. So we have gone A LOT.

We had the opportunity to go to the zoo for free yesterday, as part of a special needs day they were hosting. I could not turn down the opportunity to get out of the house and have an adventure with both boys. So to the zoo we went.

Marshmallow went to the zoo for the first time yesterday! Crazy statement right, since I just said we have gone numerous times. Well, today is the first time he was aware he was at the zoo! The first time he got it. The first time he knew he was going to see animals, and really the first time he could label each of the animals. Or even cared that we were looking at animals, or at the zoo in general. He was so excited about being at the zoo. 

I mentioned the zoo several times to him in the last week, and told him that we would be going on Saturday. He was playing a ton this week with his Little People Zoo, which was perfect. I told him Friday night that in the morning we would be going to the zoo and that we would get to see all the animals. I said it several times and asked him where we were going. He told me to the zoo. I asked him what animal he wants to see and he told me monkey. I am actually FINALLY having a real conversation with my son. I can not even begin to tell you how I feel about this. It is AMAZING. 

So yesterday was the first time Marshmallow really went to the zoo. The first animal we went to see was the zebras. We got close to the fence and I asked him what animal do you see? He told me "zebras" and his face lit up with excitement. We walked around the zoo today looking at all the animals. He told me what most of them were and pointed so many of them out. He seemed to have a ton of fun. His favorite part was visiting the farm section. They have a play area there and a petting area with goats. Also with a couple tractors to climb on and a pretend cow with utters you can milk. He had an absolute blast. And yes we did get to see many monkeys through out our day.

It was an awesome trip to the zoo! I made sure to take plenty of pictures to document our adventure. I can not wait to go back and visit again.

Checking out the desert tortoise.

Climbed up into the giant clam shell.

Milking the cow.

Decided to ride the dragon on the carousel. 

Sounding his trumpet while watching the elephant.

Playing in the farm playground.

Bushing a goat in the petting zoo area.

Watching the big monkey up close and personal.

He was all about the map. My tour guide for the day.

Seeing where we were going next.

Showing me the way.

Tractor fun! 

Looking at the turtles in the water. We counted them together.

Watching the warthogs.

fresh start : preschool

This post has been a long time coming. It has been sitting here waiting for me to finish and it just kept getting pushed back more and more. The past few months have jus been a whirl wind for us.

Last spring, we applied for the Empowerment Scholarship Award (ESA) for Marshmallow. To receive this award, you have to withdraw from the public school system and fall into one of the qualifying categories. Marshmallow qualified under special needs because of his autism diagnosis and developmental delay. This award gives us the 90% of the funding the school would have received for Marshmallow attending public school. We then can use this funding for his education the way we want it to happen, adhering to their rules and regulations (of course).

      

We took a lot of time and thought before deciding to do this with him. We were nervous about how this program would really work for Marshmallow and if it was the right decision for him. I spent most of the spring calling various schools to find out about their programs and if they would be open to having a child with delays in their school. I still really wanted him in a preschool and not just home schooled for several reasons, but mainly for peer interactions. Most of the preschools were receptive to the idea, the only hang up was being potty trained. So we spent the rest of the spring and summer focused on getting him out of diapers and 100% potty trained. Grammy was Super Grandma and came to the rescue. She was a huge part in getting Marshmallow out of diapers and into big boy pants! I am forever grateful to her grandma super powers. They work wonders, always, with Marshmallow. So blessed to have her willingness to help with the hard stuff in his life and really go to battle for him.

      

After much looking, we eventually settled on one. With another as a back-up, that did not have a potty trained requirement. Thankfully it became a non issue as all summer he only had ONE accident at school and as school got closer he rarely had them at home. Since starting he has not had a single accident! Anyhow, the preschool he is attending is set up for 2 days a week, 3 hours a day. But we decided to enroll him in both classes, so he is actually going 4 days a week, for 3 hours each day. We did this in hopes that the repetition in curriculum and routine would be both to his benefit. So far he seems perfectly fine with the repetition, they do change things slightly from one class to the next for the 4 students who go everyday.

      

In making this decision, we knew that preschool tuition would be out of pocket. As originally, we were under the impression that ESA would NOT cover preschool tuition unless it was a specific special needs preschool. We did look into a couple special needs preschools, but the benefits did not outweigh the negatives. It would not have been worth it for Marshmallow. So we sucked it up and figured we would be paying for school either way, if he did not have a delay. However, in October I found out that they opened the scholarship up and now allow us to use it for ANY preschools tuition. Which is a huge help for us and takes a little pressure off. We did pay for the first 2 months out of pocket though. But every excited that we are able to use the scholarship money now.

   

Marshmallow's first day was August 24th. And so far school has been AMAZING for him. That is actually a complete understatement. I know that I have shared how the preschool last spring was doing a ton for him, but this school has been 3 times better in all ways. No, he does not get therapies while there (such as speech), but what he does get is so much more. He is in a class with majority neurotypical peers. Peers that he can learn and model from on a daily basis. He is learning how typical children interact, play and learn. He may be behind his peers developmentally, but being able to model after them is the next best thing. He needs to be challenged and encouraged. He just was not getting that at the public developmental preschool. His class there was all delayed peers. While they were all different, none were typical. He had no one to really look up to and model himself after on a regular basis.

     

Marshmallow started the school year, excited. But he was shy. He was still working on 2-3 word sentences. He was still not fully engaging in play with peers. He needed a lot of direction. He tended to follow they peer who was the loose end in the routine (the one not always following directions). We were still working on responding to questions, instead of just saying needs and wants. He was beginning to engage in the environment around him and label things. But not really understand the world around him.



In the months since beginning this school year, so much has changed. He has made HUGE strides. He has continued to hit his goals with gusto and then some. He surprises us daily with his improvements. The week of Halloween we went to a Halloween party with a group of his friends from a local autism support group. Sadly, we have not been able to get together often with them and the last time we made it to a meet up was right before Skywalker was born. So 6 months ago. Every one of them was shocked at how well Marshmallow is doing and how far he has come and how much he has improved. He is a completely different child than he was 6 months ago. 6 months ago he would barely parallel play with his peers and at this party he grabbed one of his friends by the hand and told her to "come" and engaged in initiating play with her. Not only is he engaged, but he is INITIATING!

       

He is definitely not the same child from a year ago. A year ago when we were just starting this journey. The child who would not even look when you said his name or engage in play without being told how to play. He is using sentences (still with lots of prompting), but he is doing it. He is trying. He just continues to make such huge strides forwards. It is AMAZING to watch. Everyday he impresses me with something new.

      

Next week we have our parent teacher conference at school, and I am looking forward to hearing about how he is doing from his teacher's perspective. And to see what we can be doing to help him further at home. For now, I am so glad we made this decision last spring. This has certainly turned out to be one the BEST decision we could have made in advocating for our child. It has definitely helped to have him enrolled in a school that encourages his growth and supports him every step of the way. I can not wait to see how he does the rest of this school year!

         

By the way, I love that his preschool posts pictures weekly from the school day. I get a little peek into his day without being there!