a little background

hi, my name is mandy and I have two amazing little boys. My oldest son, Ty, has been diagnosed with autism (which is what you will read most about in this blog); I also have Tripp, who is an amazing little brother to Ty (who you will also hear alot about). I was encouraged to start this blog to document our journey through life and life with autism... my world has been rocked in last few years and i have responded in good ways and bad ... but Jesus has gotten me through all of it...

i hope i can be an encouragement to you, and for the friends and family that will read this - maybe this will keep you posted indepth on what Ty is learning! :) and the adventures of Tripp too

thank you for reading, and if you have any questions, comments or smart remarks; feel free to post them.

Friday, July 24, 2015

still fighting and waiting ....(long post)

Here we are, the week of school registration and my kids are not registered for school. Not because I don't want them in school but because of all of this red tape we are still fighting. Our home school district, Amite County, has released us under the 30 mile rule and is somewhat baffled by the North Pike School District not accepting us. There are probably 20+ families affected by this and some have chosen to attend private schools while others are still fighting to get into North Pike and I believe others have made efforts to move into the district. We were told in our denial letters (that we received in July) that we could attend North Pike for just this year if Amite County would re-release us under a different rule, the "general release", however, according to Amite County there is no such release and they are now waiting to hear from their lawyer and school board to determine what action they are allowed to take at this time. I am blown away by this entire situation and how it came about. We were told in one of the school board meetings with North Pike that they mailed us all letters back in March informing us of this new rule and that we would be reviewed and possibly not be able to attend this year. No one received a letter. No one. When we asked for a copy of the letter, it wasn't given. Today some of the parents and myself met with one of our state representatives and had a phone call with the state attorney and asked questions about clarification of the 30 mile rule. As of right now we have been denied acceptance to North Pike because they said it is against the law for our kids to attend due to us being one mile closer to another adjacent school. However, the law reads that we are allowed to attend an adjacent nearer (nearer than our home district) school because we are released from our home district based on being 30 miles outside of the bus route. Everything comes back to the bus route and North Pike did not determine our acceptance based on bus route, instead they based it on a direct route from our homes to each "nearer" school via map quest. Which is wrong according to the law. So here we are still waiting and trying to get answers and find out if we can be accepted based on the information we were given today. I don't know what will happen because it will still be based on the opinion of the board. I am praying that they allow us to stay.

We asked our state representative if this was the intention of the law? He said "no". Our hope is that we can change the law and allow our kids to continue to learn in an environment that will benefit them and challenge them and allow them to grow and learn with the teachers and staff that they already know and love.

An update on Ty. We have had a crazy summer. I just got home from a trip to Seattle with one of my best friends. We were there attending a conference, the National Neutropenia Network, for people and families living with the rare conditions that causes their bone marrow to quit working (that's the mandy definition). There are many types of neutropenia: congenital cyclic, congenital, autoimmune, idopathic and others that they haven't named. Here's a link if you wanna know more about this http://www.neutropenianet.org/what-is-neutropenia/types-of-neutropenia/. These conditions are so rare that most doctors and nurses don't know how to treat patients correctly and once they are sick and need medical attention it is critical that everything is done just right, and without proper care something as common as a cold, a cut, bug bite etc ... could turn into a major infection and sepsis in a matter of days, hours or even minutes. So it is important for them to have friends and family familiar with their care so that when they aren't able to explain their condition someone else can. The day I left for the conference I got a phone call as I was boarding a plane in LA to head to Seattle. Ty choked on a ball and they had struggled to get it out. It was extremely traumatic for everyone and by the grace of God Ty coughed up the ball on the way to the ER. Sam called me to let me know what happened once it was all over and even though I knew he was ok, it rocked my world. I hate being away from my boys especially when they have had traumatic events. I am a paranoid momma on "normal" days and I guess you could label me as a helicopter parent or maybe even worse than that but sometimes you just have to be. There are so many things that can happen to anyone in a split second and especially Ty. He has started to mouth objects a lot more and is real bad about just shoving things in his mouth; food, toys, plastic bags, just anything. We went to a golf course back in June for a Miracle League benefit and someone handed him a ball and he just put the whole thing in his mouth!? We immediately took it away but it is still scary how quick he pops things in and tries to chew on them or swallow them. Ty hasn't had any issues from his ER visit and as far as we know he is extremely healthy and happy. But this momma and his daddy are on edge watching his every move, more so than normal. We are so blessed to have our boys. After spending a weekend with mommas who fight for themselves and their kids daily to live with a condition that no one really knows much about. A condition that makes hospitals a second home and that forces them to face the reality of life and death on a regular basis. It made me want to embrace this life and each day with a different attitude and to really take advantage of every opportunity I am given. To not be satisfied with mediocre living but to give, love, laugh and enjoy life daily with those around me. To share the love and joy of Jesus with everyone I meet! To not just say "one day we will do ......" but to just do it. I hug and love on my boys all the time... but this past week has made me want to hold onto them even more, give them more kisses and tickles and to fight harder for what Ty needs. To fight harder for what Tripp needs. To give them everything I can in this life and to show them the love and joy that comes from giving your life to Christ. I hope and pray that my boys will see Jesus in me and I hope and pray they will chose to follow Him when that time comes. Our lives are just vapors and I see that more now than I ever have before .... So all of that to say hug your loved ones and tell them daily what they mean to you. Thanks for reading... I know this was kind of all over the place ... we have just had so much going on and it's been kind of an emotional roller coaster in more ways than one. love y'all!

#lettystay maybe we will get some answers on school asap!!!

Friday, July 10, 2015

Ya'll are amazing!

So I really need to just write a post to say thank you! Thank you to everyone who has read our story, who has shared it on facebook, so many of you have changed your profile picture and shared our hashtag on facebook, twitter and instagram... and I am so grateful! There are so many families who are affected by this right now and I hope and pray that bringing awareness through Ty we will be able to change some things. I have met some amazing parents who are fighting for their kids and I hope we are able to make some changes! We are still waiting on the two attorneys to meet and discuss the possibility of allowing the children on the 30 mile rule releases to be re-released under a hardship release for this year only. If this all goes through then I am hoping that it will give us time to change the law. So that we won't have to do this every year and so we won't have to worry about a new "interpretation" of an old law causing so much madness for our kids. Thank you so much for the love and support each and every one of you have shown us these past few weeks. Thank you for the prayers. Thank you for the encouraging words and most of all thank you for loving us! Ya'll are amazing and there have been so many times that I have scrolled through facebook these past few days and had people I have never met fighting for us and it blows me away! For all of you amazing friends of mine, ya'll mean the world to me! Thank you for changing your profile pictures, for sharing our story and for everything else, I don't even know what to say ... ya'll are just awesome! I am surrounded by so many amazing people and I thank God every day for all of you.

THANK YOU, THANK YOU, THANK YOU! ***insert a Ty cackle and face grab here :)

#LETTYSTAY and not just him, but all the other kids affected by this too.... lets do this!

Tuesday, July 7, 2015

#hashtags ...

I used to think hash tags were silly ... I mean when i first saw them I called it a "pound sign" because I'm old and in my day that's what it was lol.... well now I can see what a hash tag is capable of, it can spread awareness and start a movement so in an effort to get my little guy back into the place that will further his education and with the help of a friend I started #lettystay ... we are still waiting on a special meeting from the board at North Pike and until then I'll keep posting and spreading the word... maybe we can change things, maybe we can get the law re-written... you gotta start somewhere.... so for now #LETTYSTAY ...

I've seen folks change their profile pic and post pictures of ty so here's something I made that maybe we can fill social media with ... and maybe, just maybe we will be heard...

Monday, July 6, 2015

the wait after the fight.....

Last Thursday I had my chance to plead my case to the board. It was a really small room, a friend of mine went with me and some other friends who are affected by the new rule were there too. There were parents that I didn't know and some politicians who wanted to hear what the board had to say, I guess that is a regular thing politicians do? I don't really know ... anyway and then there was the board. I introduced myself to each member as they arrived and to the superintendent (we got there really early); and then we waited. The meeting began and they addressed a bunch of random things and signed a bunch of paper work and then came the time I had been waiting for, as I waited for my name to be called I could feel myself starting to shake. I wasn't scared, or even nervous I was just shaky. I had a packet of papers for each board member; in the packet was a letter from his ABA therapist, a letter from me, a copy of the 30 mile rule, and maps of my house measured to the district lines. The reason there was a map and measurements was because by my interpretation and by the interpretation I was given from the man in the State office, I would need measurements from district lines to my house to determine my district. Later I found out this was wrong, because they interpreted the law differently... anyway I can write a whole post on that alone... So they called my name first and before I passed out my paper packets, I told them who I was and showed them a picture of Ty on my phone. I wanted them to see whose education they were deciding on and not just a name on a sheet of paper. I told myself I wasn't going to cry and that I was going to be firm and informative.... yeah well that all went out the window. I was able to tell them who Ty was, where we lived, what all was in their packet of papers, my understanding of the 30 mile rule and then i began to tell them how far he had come and how amazing his teachers and therapists are at North Pike and then my words just stopped.... as much as I didn't want to cry in front of this board, this five member panel, some who couldn't look me in the eye and others I could tell were torn in this decision that laid before them. I struggled to get out my last few points and just sat down... I felt defeated and I really wanted to just crawl under my chair when I was done. But I sat and listened to other parents plead their case. Then the board had an open discussion in front of us and I could see concern in some of them, I could see how they almost looked like it was hurting them to do this... but others seemed to not care and money was brought up, because the district doesn't receive money for transfer students ... well after they talked and one person spoke up to ask if my interpretation of the law was right because as it reads, it could be interpreted that way. He was told no by the superintendent.  Then another board member spoke up and asked if we could all be approved for this year. That way we have time to make plans for the future - well just when I thought we would get the ok, another member suggested tabling the decision in hopes to hear from the attorney general....... so now we wait.....and if you know me, you know I hate to wait.... well as I was leaving the meeting this lady stops me and asks for my phone number. Apparently the girl who I thought was taking minutes for the meeting was a reporter ...and today our story was on the front page of the local paper.... so maybe that will help? I don't really know??? So I guess I'm just asking for prayers.... i know if it comes down to it we can always move... but that's something we are trying to avoid, the short notice, expense of it all, and again changing Ty's environment. .. just some of the things we are trying to keep stable ;) thanks again for reading love yall