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!!!

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