What’s Best for Him

Our school year is well underway, our little loves are adjusting to their new teachers, bus drivers, and schedules….well most of them. Our littlest guy was not adapting well at all. While his brothers and sister were excited to see what their new school’s had to offer them he was terrified. Completely. Terrified. This year he would be in class without his brother. This year he had a male teacher. This year he would start without knowing anyone. Kindergarten can be a scary place. His preschool had some worries about him starting kindergarten. Academically he was ready. He knows all of his colors, he can count to 100, he knows his shapes, and he can write all the letters not the alphabet. He can even correctly spell his full name. He can even sign the alphabet (forward and backward) I think he is pretty smart for a new five year old. But kindergarten is more than A B C’s and 1 2 3’s. Socially he is not ready. We tried the kindergarten class, but within a few days we knew it was not going to work. His teacher said he would stay to himself, he would not answer (or even acknowledge) anyone that asked him a question. He basically shutdown on us all.

He did not want to get up in the mornings. He cried as we went to the bus. He would not talk about anything that happened during his day. He didn’t want to go to bed at night because he knew he had to get up and go to school the next morning. Our happy, go lucky, always making a joke kid was miserable. My momma heart broke for him. When the school called for our meeting I knew something had to change.

As I sat in a room with teachers and staff that barely knew my son, I questioned if we/I was doing the right thing for him. If I stuck to the plan with him staying in kindergarten he could come out of his shell in a few weeks/months and everything could be okay. He could also be completely miserable and in the end fail kindergarten and have to repeat it again next year. Or we could place him back in preschool and help him build on his social skills and possibly transition him into the kindergarten class a few days towards the end of the year and that way he would be ready for kindergarten next year. The choice was clear. He needed another year of preschool. But how would he adjust to yet another change this year?

Part of me wants both of my five year olds in kindergarten together. But I want what’s best for him, not what I pictured life would be. He needs this. His teacher knew I was worried about the decision we made, so she sent me a few photos through this first day. I can’t tell you how much those photos meant to me. And when he got off the bus from his “second first day” the smile on his face said it all. He was happy, so very happy.

I hope as the years go by he understands why he and his brother are not in the same grade. I hope he understands we did what we thought was best for him. I hope he understands that every decision we make is in hopes of giving him a better life and giving him the best opportunity we can. But those are all questions for a later day. For now I will focus on the smile on his cute little face and know that he is happy and feels comfortable in his new class. Here’s to a great preschool year!!

Today was a Good Day

What a great day, just what we needed. Today was well overdue so I am thankful.  The last few months have been brutal.  This was the first weekend in over six weeks that everyone in the house was feeling well.  The month of February alone our little loves had four double ear infections, three cases of the stomach bug, two upper respiratory infections, four fevers, one cutting teeth, and then my husband had the “man cold”.  We all know that last one was the hardest on all of us, right ladies?  I don’t know how we didn’t catch the flu, but praise God it spared us.

On top of all of that we received test results back from the geneticist for Alex.  It has been confirmed he has Alcohol Related Neurodevelopmental Disorder (ARND).  Eli with his chronic stomach issues was given the diagnosis of Underdeveloped Bowel Syndrome. And I was told I would have to have back surgery again.  When it rains it pours.

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Today it was time to get out of the house and forget about all the bad stuff and just have fun.

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I stumbled across a local autism group called Autism Site Knoxville (ASK).  They were hosting their fourth annual Day at the aquarium today.  When I saw the invite last week I thought it would be the perfect way for us to spend a Saturday morning. And how could we pass up the low cost of only 10 dollars per person?  As the day came closer however all the normal mom worries started coming to the surface.  We had not even made it to church in two months how in the world would the kids do at the aquarium? Would it be to crowed for JR?  How would he do with the noise? What is he had a meltdown? How would my husband and I handle it with all the other little loves in tow?  This would be the first big outing that we had done in months and we would be doing it without the help of our older children or grandparents.  Not going to lie I was a little overwhelmed.  But when your four hours away from family you got to go out on your own at some point. With our family its just a much larger challenge than most.

So this morning we loaded four very excited and two very sleepy children into our 12 passenger van at the wee hour of 6am so we could drive a little over two hours to be there when the aquarium at 8:00.  The event ran from 730 to 1030 but of course we were free to stay longer.  I am so glad we went.  The staff was super sweet and handed out goldfish, gummies, and water to the kids as we came in.  Being that early in the morning the kids were able to walk around and enjoy all the different tanks without being ran over by other people.

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The event organizers had different sensory stations set up throughout the aquarium so if JR or even our other kids wanted to take a break they could.  The lights were softened and the background music was turned off. Everyone there got it.  Everyone there was living in the world of autism.  There were no nasty remarks about behaviors, or looks when he made his unique noises, and no one stared at us.  Okay some people did look at us but it was not because of JR it was because of the size of our crew lol.  He rode in his stroller for a while then walked with me for a while. He pointed out the scary sharks and the huge sea turtles.  And he made it known he did not like the seahorses, after all real horses don’t look like that.

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He made friends with other people waiting outside and made sure to tell all the moms we passed just how cute their babies were.  And no one cared that he was talking to them or touching them.  Most told him thank you or even told him he was a cutie as well, to which he would just laugh and smile.  He really enjoyed himself. Our other kids had a great time as well.  We don’t get to do things like this often unless we have our backup team to help us in case he has a major meltdown or takes off running. He has no safety concerns at all.  So thank you ASK for making today possible.  Thank you for hosting events like this so that children and adults with autism can go and do everyday things.  Thank you for opening it up to all of our children so that we could attend as a family. Thank you for a day we will not soon forget. Thank you for giving us a day were all of our kids could just be kids. Thank you for helping this mom see her son really enjoy himself today.  Today was a good day and we so needed a good day.

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Looking at His future

We had our mid-year parent teacher conference for Wild Man last week. I knew by the marks on his papers things were not going great in the traditional classroom. As a mother of a child who has autism, these meetings are dreaded. I know he is not on the same level as the other children his age, I know that he is falling behind, and that bothers me.

As I chatted with his speech therapist and his autism teacher before going into the meeting I addressed my concerns. They both shared stories about my little guy that brought smiles to their faces and told me it was natural to be concerned but he was really doing great. When his teacher was ready we walked in together and sat down. His teacher went over his test scores which were extremely low. She explained that he does not do well with timed test which was part of the problem but the test are mandatory so she had to give them to him. She then explained that even though it does not show up on the written test my Wild Man has grown leaps and bounds in class. He is starting to use full sentences, he is holding a pencil, he is engaging with other students, he is setting in his seat for at least 10 minutes at a time, he is making friends, and he is making eye contact here and there. All wonderful new skills for my son but all things that standard testing do not look at. I was excited to hear he was doing so well, relieved in many ways.

But I still questioned things like his spelling words, he has spelled one correct out of the last sixty. Only one. Math is a struggle. And homework when he does have it is a nightmare. I don’t want him passed just to be passed. I also don’t want him overlooked. He falls in the middle. He is doing to well to be in the autism room full time but he is not up to level with the regular class. He is somewhere in between. I am thankful he has an aide to help him through the day.

As we discussed plans for the remainder of the year one of his therapists said they wanted to help give him his best possible life. His best possible life. That phrase hit me hard.

As a mom I have thought about all of my kids futures. I see them all doing things like going off to college, getting jobs, moving out, getting married and starting a family. With Wild Man I want these things as well but I also know they may not be a reality. He may never go off to college or hold a traditional 40 hour a week job. He may be with us for our life time. If something happens to myself and my husband who will care for him? There are so many questions and concerns I have about his future, I worry but I can’t let it consume me.

He is in good hands right now at his school. They understand my concerns and they are working on goals they feel he can reach. They genuinely care about him and his education. I could not ask for a better staff of teachers and therapists to be working with him. he has been blessed with wonderful teachers since his preschool days. We will take this one day at a time. I have a life time to worry about his future, for now I will enjoy my silly, loving, crazy little boy. We will get through this together just as I promised him the first time I held him. After all autism is not who he is, autism is just a small part of what makes him my son. My wonderfully, sweet, amazing, brilliant son. I am so lucky to be his momma.

Education and Autism

Let me start off by saying fair/equal education should be available for ALL children. It’s that simple. No child (or their parent) should have to fight for an education that many take for granted. However, if you have a child with special needs I will warn you it’s a fight. Every. Single. Day.

I will say that where we live now seems to have a better system in place then where we once lived. But it’s still a struggle. All I want, all any decent parent wants, is for their son or daughter to succeed. That starts at home and at school.

My wild man is almost seven. He attends a public school. In order for his needs to be met we have an IEP in place (some states call it a 504) Basically it is a plan that lays out my sons strengths and weaknesses. His plan gives him scheduled speech times and OT times durning school. His plan also calls for an aid to help get him on task throughout the day. Sounds perfect right? I thought so at first.

Last year he was in an autism/special needs classroom. The class size was eight children and eight aids plus the teacher. There was a calming room, sensory toys and tools, and even an OT room. He’s teacher taught him to hold a pencil and he finally was able to write his name. He was excited to go to school. He loved his class and peers. It was perfect and he was doing amazing. To amazing according to the school. At the end of the year it was agreed (I went along with it thinking they knew what they were talking about) that he would be placed in a normal classroom for his first grade year.

Normal, an odd word in the land of autism. Nothing about our lives or wild man is normal. Why oh why did I think this would work. The first few weeks went okay. I think he was excited to be back at school. But as the days turned to weeks and weeks turned to months he slowly started hating going to school. One of the things that aggregate him (okay me) is that he is now expected to do spelling test. I know, I know all kids have to take spelling test. I get that. But he is still working on forming letters, how is he suppose to spell a word if he does not know all the letters to the word? In the last six weeks he has managed to get one word correct. One. One out of sixty. The word was frog. When he showed me his paper he beamed with pride. Look momma I did good. Frog ribbit ribbit. The nine red X’s did not phase him. But they crushed me. Another his personal aid has four other students. How is she suppose to care for my son’s needs when she has four other kids? Thank you budget cuts. He has sensory issues so he eats only a few foods. Two of those being peanut butter and Stage two peas, yes the baby food peas. Well he can’t take peanut butter because someone in the other class has a peanut allergy. As far as the peas, a boy in his class called him a baby for eating baby food so those are now out as well.

He is lost and I don’t know what to do. Part of me was so excited to hear he was doing so well at the end of last year, but part of me worried that he would get over looked and left behind in a regular classroom. My fear as become his reality. He hates going to school now. And even though he can’t articulate why he hates it I have a feeling I know why.

So, I started looking for a new school. And I thought I had found one. It was a private school so the classroom sizes were small and they worked on an individual plan based program virus the whole class learning the same thing. It seemed to be the perfect school, until I was told how much it would cost. One year over 12,000 dollars. Wow. We are a one income family currently with six little ones in the house. There is no way we can afford that kind of tuition or justify it. That’s when it hit me, we need public schools that specialize in special needs. Why should it cost so much more for them to receive a descent education?

It’s time for better education for my son and all the other children who have autism, or Down syndrome, or any special need. Why should they get left behind or overlooked? Why should their disability be a magnet for educators or providers to charge more for their services? Have you looked at the cost for some of the sensory products or equipment for those with special needs? It’s insane. What’s a mom to do?

We fight. Day in day out. We become the face the principal and staff at the school dread to see. We make sure our concerns are being heard and that they are being met. We become moms like Maya DiMeo off of Speechless. We go in demanding and we don’t back down. Ooooh good you’re here...again

The fact is I would love for my son to be what society defines as normal. I think all special needs parents feel that from time to time. It’s natural for us to want our children to fit in. But the reality is he is not. He was made to stand out. No matter how hard he tries or how much I pray he will never be “normal” and that’s ok. God made him in His image so my son is exactly how he is suppose to be. He may learn different,act different, and talk different but different does not make his less. As his mom it is my job to make sure everyone sees that.

I will fight for you, for your education, for your independence, and for you to be excepted. Mostly I will fight so others can see you the way I see you. My brilliant, creative, funny and loving son. Don’t worry wild man, momma’s got this!

The X Factor: School Life for Our Autistic Son 


I attended my first IEP meeting for this school year for wild man a few weeks ago.  As a mom I want the best for my kids. I want them to have a great education and be able to succeed. As a mom of an autistic child I want these things and so much more.

 The meeting went well. His new teacher, OT, speech director, principal and his teacher from last year all love him.  Which makes me feel like we made the right decision on the School.  We went over his daily schedule and how we could make it better for him.  This year he will have his major subjects in a regular classroom while his afternoons will be spent in the classroom equipment for special needs (this is the classroom which make us choose the school in the first place). Change is hard for him but I want what’s best for him.  

The meeting was filled with comments like “he is doing so great” “he is working so hard” and “he has come a long way”. All of which made me smile because he is doing great and working hard. And he has come a long way, a very long way.  It’s in these moments that I get lost and almost forgot he is autistic.  Everyone bragging on him and telling funny stories about things he has done.  I love seeing other people’s faces when they talk about him.  They just light up he has that effect on people once they take time to get to know him. 

But then there comes the reality.  Take this work page for example.  He scored a 3 out of 10.  I know placing him in the regular classroom is supposed to help him build social skills and help him become more independent.  But he is so lost when it comes to the actual school work.  I don’t want him to be overlooked or just passed through because of his disabilities. I want him to have a chance to learn and to grow just like any mother would.  I know many of you are thinking “it’s just one paper or he is just in 1st grade” but that’s my point. This is just the beginning. What happens now and how he is treated will affect the way things go from here on out. He does not bring many graded papers home but when he does most notes are “he tried hard” At what point will he become completely lost and what nothing to do with School? Will he always be this happy go lucky boy or will the struggles become to much for him the bear?  I worry because it’s my job to make sure he receives the best possible education he can receive. I worry that the other kids will start calling him names or talking about him because he does not get the answers right.  I worry constantly about how his peers receive him.  

But then my son does the most wonderful thing.  As I look at all the X’s on his papers and the comments my son, my beautiful intelligent son points at the papers and says “look momma I got this one right” and smiles great big.  Even in a world full of negativity and large red and green X’s my son only sees the good, he only sees the beauty. As his mom I worry about him in this crazy world we live in.  People are so cruel to each other and I am scared that the things that make him unique in Gods eyes will get him teased or even hurt in this world.  But God has given my son a unique way of looking at things. He only sees the good in people and in things.  He does not notice those that stare at him or say hurtful things about him. I am truly thankful for that.  As his mom I need to try and see the world the way he sees it.  I need to find the good.

So yes we celebrate the three right answers, because a year or two ago none of this would have even been possible. We celebrate that he can now write his name and that his teacher said he is now sitting at his desk up to three minutes at a time. (This is huge for him) We celebrate that he has even sat at the dinner table with us a few times this month and we were able to have dinner as a family(and this is huge for him). We celebrate the red and green X’s because they show us progress. He is moving forward in all areas of his life.  We celebrate because God has made this prefect little guy ours and we are the ones that get to watch him grow and succeed at life.   

We celebrate because we are blessed.  

Thank you wild man for opening my eyes to more than just the negative.  Thank you for helping me see there is beauty in everything, even in X’s.