And then Monday happened.

I was dreading J’s week off for Spring Break. Afraid of what type of mood he would develop after being home for the majority of the week. Afraid that the aggressive behavior we were starting to curb would come back full force. Afraid that changes with J’s demeanor would also affect mine, causing me to be on edge, irritable and moody because let’s face it this 6 year old runs the show around here.

But our week was really amazing. J was in a great mood, productive with us for the most part and to my joy, getting back to looking/reading his books. Thanks to his amazing teacher for making additional pictures that we needed to be able to work on his First/Then schedule (which he appreciates so much so that he can change them himself, not always to our advantage), we were able to have three successful errand trips with the aid of my sweet co-workers giving us her car DVD system to help aid with the return home trip. So what if we bribed him with McDonald’s that one time.

But lets be clear, there have been a few issues because nothing is ever that easy for us. We could have gone without the boy eating non-stop. Larger than usual grocery bills because of our growing boy. And we could have done without the 3 and 4 am wake up calls because nothing is worse than waking up to the manic laughing coming from your 6 year old autistic child’s bedroom in the wee morning hours. What’s so funny? Your guess is as good as mine.

So even though we ended the week a little poorer and more sleep deprived than before, it was worth it. Seeing his wonderful smile, hearing his infectious giggles and spending quality time with him was so nice. Wish it could have gone on forever but as with any child, especially autistic children, Monday happened. It was rough, I had to be on my toes, he was tried of being home and so was I. We made it through, even if I did let him have a little extra screen that evening. Such is life.

 

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Perspective

A lot can happen in 9 years. Dreams come and go. Perceptions of what was to be change. Challenges await and happiness is ours to grasp. As the hubby & I celebrated our anniversary this week, all these thoughts pass through our minds. What we once pictured our life looking like is no longer. It has been replaced with an alternate reality. One that is different, but at times even better than what we could have imaged.

Though we had envisioned sunny and tropical vacations in the summer for our family, we are investing in our home as this is where we spend the majority of our time. We’re making it our own oasis and though it has taken time, we are content and happy to be in our own space.

We had purchased our larger home with the hope of having more children and though the means of achieving this has changed and will take some time, our home is wonderful for entertaining  and enjoying time with our family and friends. Eating, drinking & being merry.

And as we love to visit new restaurants and explore social districts this isn’t always feasible, for many different reasons. When we do get to go out, like for our anniversary date, not a minute goes by that we aren’t enjoying ourselves immensely.

All of these changes in what we thought would be is the cause and effect of having a child with autism. What we wanted to have, what we need, what we are able to do and what we want to be, has all changed because of autism. J is challenging and at times very difficult, but overall J is a simple child with simple needs and his wants are few. Our perception of having a child has by far been the biggest change in our 9 years together. All the parenting advice you get when you are pregnant can be literally thrown out the door when your child is diagnosed with autism, and that is perfectly okay because none of it applies any more.

Our dreams of what life would be like in the beginning have been altered and even though it has taken time to come to terms with this difference, it is under no terms worse, just different. It is what we make it to be. I choose to make it perfect, much like our child.

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Restraint & Seclusion

There’s been several incidents in recent months of autistic children (mostly those with sensory processing disorder) being handcuffed due to conflicts at school. Now when I see these stories, a knot does form in my stomach but I have to take each story with a grain of salt because we don’t know what escalated the situation or even all the details of the incident. I understand the schools have procedures for when students get unruly and action needs to be taken, but I wonder how much of this is a blanket procedure instead of  handling a situation based off the mental well-being of the student because a one-size-fits-all shouldn’t be accepted for all students.

8 Year Old Boy Handcuffed at School after Playground Altercation.

2nd Grader Handcuffed at Tacoma-area elementary school.

Pasco Mom Upset after Deputy Handcuffs Autistic 7 Year Old Son.

Now, while I still don’t know the full story of these incidents, I gather that each child’s education team was lacking resources or ill equipped to handle possible behavior issues that may arise effectively. Most importantly, they should NOT have been handcuffed. Teachers and school administrators need to have proper training and guidance when working students, and more so when working with students with special needs. But I also feel that the parents of these students didn’t ask how restraint or even seclusion would be administrated if needed and how they would be notified. Parents need to open communication early in their child’s education to know what the school’s district policy on restraint & seclusion is, you need to know your rights. To be a parent of a child with special needs and not broach this subject with your child’s teachers and/or administrators is naïve because you can not have the mind frame of ‘this will never happen to my child’.

As a mother of a non-verbal autistic child, I would be appalled if J was ever handcuffed and/or restrained unnecessarily. I think my heart would literally break, but this is why we have opened communication with our education team, and I have a copy of the policy and it will be part of his annual IEP discussion going forward. J actually has been restrained once, it was the beginning of the school year (when his school team was still working diligently to get his behavior evened out). His teacher called to inform me of the incident within hours; explained the incident and why she had to do so. It was for justifiable reasons. I appreciate her quick notification and that communication is so open between us. I know that isn’t always the case for parents.

Recently this subject has even been presented in a updated bill in the Nebraska legislature. LB 595 – Student Discipline, to provide for use of physical force or physical restraint or removal of a student from a class in response to their behavior. However, there are no definitions or provisions on this bill about teacher and/or administrator training requirements, or of how those with special needs will be treated/handled or how parents will be involved.

Debating Discipline in Nebraska’s Schools

Bill that would all teachers to use force to control violent students draws concerns

And let me get this straight, no teacher or administrator should ever be hit, slapped, kicked, punched, etc. and should be able to use means to protect themselves or others around them, if necessary using restraint or seclusion. BUT God help you if you don’t notify me same day (preferably within hours) of the incident because an autism mom’s wrath will be just as severe.