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!!!

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!

#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...

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 

fight

I knew from the first day I had to write my request to be released from one county and approved for another that there would come a day that I would have to fight. I knew that one day someone would say "no" and I dreaded this day. Especially now, because you see right now, my little boy who is 7 years old and non-verbal; he loves his teacher, he loves his therapists, he knows his school, he knows his classroom, he knows the teachers, he knows his routine, he knows his friends and they all know him. They all know how to talk to him, they know what each grunt and gesture means, they speak his minion type language they laugh with him and know how to discipline him. To take him out of this environment would not only hinder his education, it would devastate him. The part that kills me the most is that he won't be able to tell me that. He won't be able to say "mom this pisses me off" instead he will act out in behavior and he will appear to be a "bad kid" when in all actuality it's all because someone somewhere claims that they want the best for students and schools and education and that they "understand" why I am fighting, their concern stops right there. The words are spoken from the people who have the power to do something about this but it stops there. Their hands are tied because it all comes down to money and that's really the bottom line. Why not require a small transfer tuition like other districts do, if it's all about the money? I know schools can only hold so many people, but how can you move students who have done everything right, who have gone through all the right channels to be in the schools that have the best for their kids, and you know there are those who are cheating the system and using loopholes or just blatantly lying about their residency... but instead we go after those who do it right ...
 I am on the agenda to meet with the board on July 2nd and plead my case... I hope I keep my cool, I hope they understand, I hope they see his need... and it would be icing on the cake if they would allow Tripp to attend too, he was so excited to get to go to NP with his big brother. To walk him to class and see him in the hall....
Before school was out I had one of the best IEP meetings I had ever had about Ty's education and the plan that we have in place to help him reach his goals... I know I am all over the place with this and I know I probably haven't explained exactly what is going on so here's the short of it.

We are a transfer student from a different county. In Mississippi a student is allowed to be released from their home district if the bus route is over 30 miles and then can transfer to another adjacent closer district. In section 37-15-29 it says "No child shall be required to be transported in excess of 30 miles on a school bus from his or her home to school, or in excess of 30 miles from school to his or her home., if there is another school in an adjacent school district located on a shorter bus transportation route by the nearest traveled road. Those children residing in such geographical situations may, at the discretion of their parent(s) or legal guardian(s), enroll and attend the nearer school, regardless of the residence of the child"
So we have no problem being released from our home district, but we are having a problem being accepted into the school Ty has been attending in the special education program for the last two years. According to them we have to attend the closest school from a direct route from my house to the school. From all the research and all the phone calls I have made (MDE, state reps, school districts, superintendent, etc) and from reading the law, my interpretation is based off of school bus route not distance from home to school? So my hope is that they will agree with me. My hope is that I come across professional and polite .... we will see.... I don't really know how to end this other than to ask for prayers. There are so many other families effected too and I would ask that you pray for them as well. thanks for reading.

Awareness and Baseball!

Four years ago this month I posted a note on facebook that eventually turned into starting a blog. I wasn't real sure about blogging at first, but it has really helped me to track our progress and it's almost like free therapy! HA! I went back and re-read that first post and a few others. It's just amazing to me how far we have come in 4 years. The fear of possible encounters and challenges is still there but the knowledge and know how of what to do to handle it has come a long way. I sure don't always get that right and there are many days that I still handle things the wrong way, there are still days that I ask God "why", there are some days that I want to just smack a few folks in the face and shake them and tell them what I think about them or what I think about their reaction towards Ty or treatment etc ... but I would like to think, for the most part, we have learned a lot and have done our best to get the boys involved in as much as possible and have created our own "normal" if you want to call it that.

Speaking of our own "normal", it's baseball season and if you know me then you know I absolutely love baseball - correction I love softball - but I have boys, so now I love baseball! ha! Who knew that could change?! Last year Tripp played T-ball and it was just a little circus and fun and crazy, kids running everywhere and lots of laughs and happy thoughts and everyone got a trophy and no one won or lost. Well this year he is playing 6-year old ball. So they keep score. I didn't think that would make much of a difference in my actions from the stands.... yeah, I was wrong. Those that know me and have played any sport or any game for that matter with me, well you know what happened at that first ball game. I'm sitting in a chair with Ty taking pics of Tripp through the fence, and then the game starts. Our team batted first so I was still very calm until Tripp got up to bat, it was crazy, I wanted him to hit the ball like we practiced (my heart was racing and I was praying "Lord, let him hit it" seriously... praying) but he didn't - he struck out and was ok, he still had a grin on his face and ran to the dug out to get his glove and hit the field. So he goes to third base (my favorite spot so I was extra excited)! A ball is hit just barely rolling through 3rd and short and onto the grass behind them and they just stare at it. All of us parents are yelling "get the ball!" and the kids are just staring at each other like "no you can have it, no it's your turn you get it" - no urgency whatsoever, meanwhile the other team is clearing the bases .... my softball dug out voice came out more than once during that inning and the rest of the game for that matter. Then off I go to the dugout fence once he came in: "Tripp, buddy, you gotta get the ball and get the other team out ok" ... Tripp says "oh, ok, can I have a gatorade" ... insert your favorite Brian Regan joke here. Well he goes back out to third and there are two outs with runners on 1st and 2nd and the ball is hit straight to him (sam is coaching behind third base) and Tripp catches the ball and runs and tags his base and we all go nuts!? He ran in from that out like he had just hit a grand slam, his face was beaming and had a grin from ear to ear and he was passing out high-5's like he'd been doing this all his life lol. At this point the other team is crushing us 6 to 1 ... but we ended up coming back through some comical base running and non-intentional bunts and the final score was 10-7 - we lost ... but they had fun! As I was walking with Ty to the car I just thought "yeah I guess I will be that mom" but I didn't even care. And it made me think, how many times does God look at us and watch us strike out, or play by the wrong rules and run the wrong way, fumble around with whatever life is throwing us and instead of just swooping in and taking over - he lets us do it. He may be yelling from the fence but He lets us learn. He lets us experience those moments of accomplishment when the crowd goes wild. He lets us experience striking out and that encouragement of "maybe I'll get it next time" after, so that we will grow. So that He can shape us. We won't always get it right but it doesn't mean He gives up on us.

That brings me to Ty and the Miracle League. If you don't know what this is, it's a baseball program that allows kids and adults with disabilities play baseball their way. A rubber field for easy play for everyone, real uniforms, coaches, etc and everyone has a "buddy" to help them play. The Miracle League is a wonderful thing. I want Ty to always have access to everything Tripp does but baseball isn't one of those things that I can just sign him up for. I mean he would probaly have just as much interest as half of the kids playing in Tripp's league but for safety concerns and other reasons it's just not smart for me to sign up Ty for "regular 7 year old baseball" and so that's why I am thankful for the Miracle League. It allows us to try new things without too much extra stress. Ty didn't have alot of interest in batting or fielding last year and we struggled to play two innings but this year we have been practing more. He was chasing balls and bringing them back to me when Tripp was batting yesterday, so now we just have to work on his interest with a bat and a T?! We can do this! ha. I am really excited to see how he does this year! He has really been into watching Tripp practice and I am sure he thought I had completely lost my mind at the ballgame monday?! But I think the interest and his willingness to somewhat follow our instructions is there?! Who knows maybe he will grab a hold of it and love it!? There is only one way to find out. But most of all I love that the miracle league gets families together and allows the kids and adults to be the center of attention for a good reason. Not because of a tantrum or because they have special equipment. Nope. Just to be the center of attention, and the center of cheers as they play ball. That thrills my soul in a way that I really can't explain.


All of that to say, life is crazy. There are so many times that we take over and do things our way or we get mad because things just don't seem fair and we mess up regularly. But God is bigger than that. Jesus is bigger than autism and He is bigger than any battle we are facing and anything we are chasing (I love that song by the way). Even though you may think this isn't where I thought I'd be - He already knew and He knows that plans He has for you. Just keep seeking Him. He's got this. :)

Thanks for reading! love yall. If you're in McComb on a saturday come see us play!

birthdays...church... and advocacy

Birthdays and craziness…
Has February already come and gone? I now have a six and seven year old? Is that even possible? Am I old enough for that? Ha! We didn’t have “birthday parties” this year for several reasons but mainly because I just wanted to take the boys and go do something fun and celebrate! Tripp requested that we go stay at a hotel – the one in town – 8 minutes from the house….. So we convinced him to go to Hattiesburg! He didn’t understand why we had to check out that next morning – he really just loves a hotel! Maybe we should get him out more! That boy just cracks me up; his logic and reasoning blow me away sometimes, never a dull moment! So for Ty’s birthday we were going to do the same thing but he came down with a terrible case of strep. When I say terrible I mean it! Ty has never been that sick, ever. He would get the shakes and kept running fever even when we were on an antibiotic. At one point his mouth was covered in ulcers and his gums would bleed and all he could do was drink water. One night I was in the bed holding him and he was just shivering and trying to talk to me. He was using his hands and just a “talking” and my heart just broke and tears poured out. I broke because he tries so hard, and here he is hurting and shaking and he can’t tell me what’s wrong. We play twenty questions and he has gotten really good at the head nods and telling us “yes” or “no”. But what if I didn’t have time for twenty questions?! All kinds of scenarios ran through my head that night and I tried to ward off all of the “what ifs” but it just came down to me wanting him to be able to speak and how important that is in so many ways. Anyway, we ended up making another trip to the doctor and they switched his antibiotic and gave him a shot and he was good to go in no time! So all of that to say that we are rescheduling his birthday weekend!

I LOVE MY CHURCH FAMILY…
I don’t think I can ever truly express how much I love my church family. They are absolutely amazing! Their love and generosity just blows me away. They are so wonderful, just absolutely some of the most amazing people I have ever met in my life! They had Soup-er Sunday again this year for Ty and raised over three thousand dollars for him! I fought off tears the entire day. I just love that they love Ty and Tripp and us so much! They are our family and I hope one day I can return the favor and spread the love and joy and compassion that they show us on a regular basis! They don’t just help us by raising money and awareness. They are intentional in involving Ty in activities and talking to him when he busts through the doors and runs through the sanctuary like the happiest kid in the world. He runs straight to the open door in the hall to shut it and then across the front of the church to the other side and shut the other hall door. All the while “talking” at the top of his lungs and buzzing past people that jump in front of him to steel a hug and a kiss and make him talk to them. I just absolutely love that! They are also pretty amazing at stopping him before he runs out the door when he slips out of our hands or wiggles lose from a hug! Maybe the next t-shirt should be jerseys because Ty turns us all into linebackers! Lol
Ty can make all kinds of noises on a wed night during worship and not one person looks at him in a way that says “don’t do that – or shhhh its quiet time” nope if anyone even turns to look at him (because everyone is used to his outbursts and his singing and jumping and excitement) it’s to laugh with him or to smile and encourage him to be him! Just really makes my heart smile! I can tell when someone new comes in and they are caught off guard and I’ve heard someone say “oh that’s Ty” with a big smile as if to say “isn’t he having fun!” And then just get right back to whatever they are doing. It’s just a wonderful place and I love that Ty is able to learn about Jesus here and I really love how well the LOVE and GRACE and MERCY of Jesus is shown not just in their words but in their actions. Simply amazing. I love them! From the bottom of my heart!

Advocacy…
So I got to attend a statewide parent conference yesterday in Jackson. The opening speaker almost had me in tears. At some point in her speech she said “when is the last time you asked your students what they wanted to be when they grow up?” I could feel my eyes start to water and my heart drop– now for the record I don’t know when I’ve asked Tripp this question either, but he will just tell me at random what he wants to be and we talk about all those dreams. It just made me think - What are my expectations? Where do I see Ty in 10 years? I don’t want him to just complete school. I want him to get a “real” diploma. I want him to know I have faith in him. I want him to know I have high expectations and that if he wants to be a surgeon or a boss of company or a fireman or grass cutter or whatever kind of dream that he may have... Well I want him to know that we are in his corner. That we will fight for whatever he wants to do. We obviously have a lot of hurdles to cross to get there. The number one priority being speech right now and after that potty training and we are working on self-help skills too. He has been doing chores with us at home some, it cracked me up when I figured out he wanted to help. I was putting laundry away and we had just given the boys a bath and Ty walked into the bathroom and grabbed a shirt and threw it on the couch with all the clean clothes. I laughed and told him “thank you” and gave it back to him and asked him to put it in the laundry room and he did! Then I gave him some socks to put away and he took them straight to the trash can! So I laughed and the next time I gave him laundry to put a way I walked with him and showed him where they went and he put them up! With the biggest smile! Like he’s saying “I can do this mom”! And all I can do is smile and think of other ways for him to help! He’s also been putting his bowl and spoon up after breakfast and “talks” to you the whole time to make sure you see him doing it. Tripp always gets excited for him and says “look at Ty! He put his bowl up! Good job TyTy! Way to go buddy” He’s such an encourager! I just love their connection!
One of the sessions at the conference was about advocacy and how to be an effective advocate and how the child could be their own advocate, etc. But when they can’t, when there is a language barrier then you can’t just sit back you have to push and expect what others don’t. We have been so blessed to have teachers and educators that advocate for Ty – they give us ideas, they ask us those hard questions and help us make informed decisions and they care and I can tell they want the best for Ty. Obviously every system is limited by money and resources but I would take “heart” and “passion” any day over resources. So I pray that I can be that advocate for Ty and I hope that my expectations will seem “too high” and then I want him to blow us away with his abilities! Because I know he will.

Well that’s all I got today. Thanks for reading! I love yall!