ramblings and iep meetings

There are a lot of things I need to be doing right now. I have an essay and a paper to write but I keep racking my brain and decided maybe if I blog it'll help me process it all. It's my therapy. So yesterday I had a couple of meetings at the school. One was about Ty's toileting habits, they are still a work in progress. The other was about his eligibility for services at school. Let me start by telling you how amazing this team of teachers and therapists are - they really are phenomenal. The dedication, determination and ability they have to read their students blows me away. As I sat and listened to them talk about Ty and how they wanted to make sure we were all on the same page so that Ty is pushed and challenged and expected to do the same things everywhere; my mind kept running. I rack my brain daily on what to do for him. After the meetings were over, I went home and cried. Not because they did anything wrong because they didn't. They are doing everything right, to a T! I broke because it's overwhelming. There's so much to process and so much that needs to be done and so much of it seems like I should have had it done yesterday, last week, last month, last year, etc. As a parent none of us ever feel like we are doing any of it right so I don't expect to have all the answers. But oh what I would give to have the answers. What I would give for just a day inside Ty's head. Heck I'd take an hour if I could get it. There's so much I want to know. So when I come out of those meetings and everything I already know is shown on paper and discussed the only thing left for me to do is break. I am sure I already appear to be hanging by a thread on a 'normal' day ha!(what's normal right?) I can't imagine what I look like on a day like yesterday?! Those meetings are just exhausting, I don't know how those teachers and therapists do it?! They have to have those meetings for all their students?! They really blow me away.

So one of the things I need to find is a toy or a prize for Ty. It needs to be enticing to him. The best thing ever! A strength and weakness of Ty is that - at times he just doesn't care. If he's in trouble and isn't allowed to have his "favorite" things, oh well, that's not his favorite thing anymore. I remember when he was little, I use to always say that he didn't have that "one" thing that he fixated on. Most kids with autism have something that becomes their "thing", cars, trains, dinosaurs, piano, drums, etc. But Ty was always content with just about anything. He loved rocks, pictures, minions, balls, doors, plates, bowls, spoons, two of just about anything but there wasn't a "oh this is his thing". So finding a toy that can be a reward to entice Ty to comply with our requests is quite a challenge. If I'm honest, sitting here typing about it has got me a bit anxious - when I sit down to type a blog I never really know where it's gonna go. I start with an idea or things going on in my head. But once I start typing it all just kind of comes out. I delete most of it, ya'll would for sure send me away if all my thoughts made it here ha!

As I process all the information at these meetings, I go back and forth between, 'yeah I've got this and I can do that' to 'what in the world am I doing and why have I been trusted with something so important'. I know everyone has probably felt that way at some point and time in their life?! Right?! So I guess all of that to say, I think we have come a long way but we also have a long way to go.

update on life and super heroes

I really need to blog more... there is so much to tell yall! So a brief summary of the last 6 months. We moved! I have the same job, just different office. We live in an amazing school district for the boys. We have an awesome church family. We have new doctors, daycare, teachers and even made some new friends! The boys have transitioned really well into the new school. Ty challenged everyone for a while and I do mean REALLY challenged us all, but I think he is finally settling in.


He is really good at keeping his abilities a secret. Kind of like Clark Kent and Superman, Peter Parker and Spiderman, Bruce Wayne and Batman... you catch my drift! He never likes to show us what he can really do and every now and then you'll catch a glimpse of it. For example, I tried for months to get him to use his communication device to type his name. Look at your keyboard - the T and the Y are side by side. I couldn't have planned it better if I tried, his name is on any keyboard, in order, all he has to do is touch them. We went round and round, hand over hand, begging, bribing, pleading ... he just wouldn't do it. I started to wonder, "maybe he can't, maybe he's overwhelmed" self doubt poured in like an avalanche of emotions. Then one day as I was trying to get him to type "iPad" he looks me square in the face and types "TY" .... now fast forward, we are now working on sentences and most everything he says starts with "I want ....". It takes a lot of work to get him to communicate because he really does try his best to get what he wants with as little effort as possible. (typical 10 year old right?). So a lot of our conversations start off with him grunting and pointing and me pretending to not know what he wants and saying "use your talker Ty". I'm not gonna lie and say this was easy, because it wasn't - isn't. But it has shown me a whole new side of him. Last night we went out to eat and all during the meal we would ask him questions in an attempt to get him to use his talker to communicate. Do you like it? What are you drinking? etc ... It is typically met with some resistance but he did finally answer and answered quicker than before. So we are progressing. When we got in the truck he got really loud and wild acting (again typical 10 year old). He likes to mimic a dog barking when he gets really excited and he can get crazy loud with it - so as he is doing this his aunt B says " alright Ty we aren't doing that barking mess" Ty then types on his device "bet....bet.." I turn around and ask him "Ty did you just say 'bet' sarcastically??" He grins from ear to ear and nods his head. I couldn't help but laugh. We just sat at dinner attempting very basic conversation with him about what he is eating and drinking. I even did hand over hand to make him show us and then had him do it independently so that he would use his device. Then we get in our vehicle and without missing a beat he responds with sarcasm appropriately and quickly with a word that all the kids are using and that I don't even know how to find on his device?! So when I say he is kind of like a super hero that hides his abilities, this is why. Most comic books have the alter ego of the super hero to appear to be much weaker and appear to be the complete opposite of the hero hiding inside. There are times that the heroes abilities are accidentally revealed due to a dire situation and people are left in shock and wonder. They question themselves on what just happened look around and ask those around "did you just see that?". With Ty there are so many days and nights that I rack my brain and wonder, "am I pushing to hard, am I pushing enough, can he do it, is he just refusing, etc etc" and there are so many times that I say "did you see that?!" "did he just do what I think he did?!". Now I know being amazed by a 10 year old using sarcasm appropriately isn't exactly something all moms are proud of lol. But for me, it showed me that we are right. He does know, he is capable, he is funny, he is smart and apparently quick whited. And he can play just about anyone like a fiddle. He is currently surrounded by some amazing people, his teachers are phenomenal, we have friends and family who are pushing him to do his best and not just settle for the minimum and it makes a huge difference!


In my last post I talked about things I thought I'd miss out on - one of those was my boys playing sports together. Well Ty and Tripp have both been on the same football team this year! When I tell you that this community is amazing, it is an understatement. The people here are just awesome. They have taken us in and loved on us in so many ways, I don't think I could ever really explain what that means to me. Ty hasn't learned all the aspects of football and he doesn't play in every game. He is learning how to be a part of a team, how to listen to the coaches, how to follow instructions of someone other than just mom and teachers. He is learning team work and that no you don't get the ball every time ha! (ok, he is still working on that one). He did get on the field one night and I'm not gonna lie, I cried. I ran and hopped a fence so I could take pictures and videos and then I cried. He didn't do anything. He stood on the field. But that's not the point. It's baby steps and it's teaching him that if he wants to do something he can, he just has to practice and work for it. We have one more game and I really hate to see the season end. The boys have been so sweet. Tripp has really improved this year too. He is getting more aggressive on the field and he's gotten faster - he's still too big to be a running back (his dream spot) but he learned to love and embrace the job of 'center'. He gravitates to Ty on the sidelines and makes sure he gets his water and that he doesn't run on the field at the wrong time. Sometimes he acts like a grown man in a child's body when it comes to his brother. (which is good and bad - but that's a whole nother post for another day). So all that to say - I never thought I'd get to see my boys play sports together and they are. Another one of those times that God smacks you in the face and says ok Mandy I got this. James 1:6 tells us to believe and not doubt. How many times do we ask God for things, big or small and we don't really believe that He will do it. We just ask because that's what we are supposed to do. So I'm still learning, I will not pretend to get it all right, I mess up and fail on a daily basis. But I love those moments when He shows up and reminds me that He hears, He reminds me that not only did he hear my request, He answered it. No it wasn't my timing but it's not supposed to be.


I know I'm getting rather lengthy on this but I do have one more thing to update ya'll on. We have always wondered what else was going on with Ty. I know he has autism but there was just something else there and I couldn't put my finger on it. For years I asked doctors, therapists, teachers and no one could ever pin point what it was. Well his new teachers thought he showed signs of cerebral palsy. It all made sense as they explained it to me, I'm sure I probably looked like I was in a daze as they were talking because I was racking my brain to figure out how I missed this, how could I not see it before now? We made an apt with his new doc and sure enough she diagnosed him with CP. So what does that mean, well I'm not really sure, I'll have to get back to you on that. We will still continue what we are doing now, speech therapy, OT, behavior, etc. Just another day in the books :)


Well thanks for reading! I'm sorry it's been so long, I really will try and not take so long to blog. Ya'll have an awesome day! and if I start calling Ty 'Clark', you'll know it's not Griswold.

Pep talks....

So lately we have been having lots of pep talks. Every morning before school I sit with Ty as we wait for his bus and I tell him: Today I need you to have a good day, no throwing yourself on the floor, do your group work and individual work, use your device to communicate correctly-don't just push random buttons(bc he can use it correctly), listen to your teachers, stay in your seat on the bus, use the toilet not your pullup, don't wig out over doors... And the list goes on. During our pep talk Ty will shake his head yes and smile on most days. Sometimes he will look away or close his eyes and not want to "talk" about it and on the days when he is not nodding yes and he starts interrupting me and jabbering over me and closing his eyes, on those days I expect a note home on his defiance throughout the day. The days he is nodding yes I expect a good report. It doesn't always go that way, sometimes he switches things up on me and every day is a gamble. But today as I sat with him watching for his bus and having his pep talk I saw a video on Facebook. It was a mom talking about things she had hoped for with her nonverbal and severely autistic son. She said she came to a point where she realized things were not ok and not going to be ok. She came to a switching point of praying for quality of life for her son instead of hopes of him being a doctor or lawyer one day. My heart broke for her and still does. Tears were rolling down my face because she still has hope for her son but the reality of it all was that the things she wants to hope for are overshadowed by the things she has to hope for. I thought about Ty. There are so many things I hope for with him! I never thought that I'd be sitting and waiting for a bus discussing with my 10 year old about having a good day and that including: using the toilet, not getting distracted by doors, using a communication device to speak and completing his daily work (a lot of times work that is well below other kids his age, not because he isn't intelligent but because he hasn't shown them that he can do more), still talking to him about using a pencil to trace letters and hopefully one day write his name. I could go on all day with the things I never thought I'd still be teaching him and still hoping for. I expected to need to deal with things like no talking in class and focus on your study habits etc... things I tell Tripp every day.

I expected to put both my boys on the same bus and to hear them come home and fuss and talk and play together. I expected to over hear them talking about a girl they liked. I expected them to play sports together. I never expected Tripp to see his older brother as a little brother and someone he needs to help take care of. I never expected to have conversations with Tripp that involved him asking me if Ty would ever talk like we do. I never expected Tripp to come home and tell me that other kids ask him why his brother comes to school if he can't talk... And his response is priceless, he tells them just because he can't talk doesn't mean he can't learn. Don't get me wrong, I love that he has that perspective I just never thought it would be our life.

So we take one day at a time. I hope and pray that something will click. That he will thrive and show us all what's going on in that head of his. Until then I will continue to have pep talks, and I will continue to have hope for him to continue to grow and learn and I will hold onto our little victories. I'll hold onto the things I never thought we would have in our lives and I'll do my best to see the good in it all. To see how the challenges Ty and Tripp face each day will make them strong, compassionate, determined men one day. I'm sure I will fail and lose sight from time to time but I pray that I will be strong enough to see the good too, one pep talk at a time.