Melts My Heart

 

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Had an experience last week that completely melted my heart. One of Jackson’s daycare teachers/babysitters sent me the following photos. I love that the people who get to spend the majority of each day with Jackson take the time to include me (i.e. daycare staff and school teachers).

These small glimpses showing him interacting with peers and being social with others are truly special moments for me to see. We shall title this series of photos…I Found a Pair of Sunglasses.

The best part was what followed. I did tear up, but they were certainly happy tears.FullSizeRender (6)

I thank this woman and all our supporters who have gone out of their way to really understand Jackson and accept him for who he is, for he can indeed brighten your day.

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We Completed a Puzzle!

Failure doesn’t mean not doing it right, it means not even trying.

I read this today, it was #4 on a list of 5 Things I Wish Someone Had Told Met About Autism through autismspeaks.org. The rest of the article is great and I have it printed as a reminder for myself when the tough gets tougher.

This statement, however true, is a challenge. My days working with Jackson can be rewarding, but are more challenging than not as I try to engage with him to do his work (which is occupational & speech therapy rolled into one) and teach him that he needs to listen and follow through in order to receive what he prefers to do, which is usually screen time. He has to be taught that just because he doesn’t want to do his work or follow through with what has been given to him that he can just get out of what is expected of him, life doesn’t work that way.

It is so very hard to work with him when he doesn’t want to participate or is uncooperative, the minor scars and bruises are proof of the dirty side of autism. I understand that he is upset and wants out of the situation, and this is his way of communicating because he has no way to verbalize his anger. Yes, Lance could step in and take over but that may only teach him that he can make a fuss and someone will rescue him from the situation at hand. How is he ever going to learn from that?

Last night, I got so frustrated from the screaming & crying, pulling & pushing that I finally had to walk away. He won! I went upstairs, put a few things away, shred a few tears as my failure surrounded me in what feels like a never-ending-battle, picked up some more, dried my eyes and finally went back downstairs. By this time Jackson had relaxed and was calming looking at his books but I had come back when a vengeance and we were going to finish this work session on my terms! After getting him back to the table and in his chair, we finished the session with only a few minor mishaps aka puzzle pieces being thrown across the living room while I stayed the course and Lance rounded up flung puzzle pieces. We finished a PUZZLE!

He was perfectly content after that…well almost. Since he hadn’t completed his work in an acceptable manner, screen time was a bust. He was told repeatedly no when he asked for it and here’s the funny thing, he adjusted to it just fine. So there is hope on the horizon, it just takes time, it always does with Jackson.

So with all this said, I felt like a failure yesterday, a BIG one in fact but as my husband pointed out then and as this article does today, at least I’m trying AND I’ll never give up doing what’s best for Jackson. There will always be trying times, times I think we won’t be able to get through, but we will. Now I just have to remember this for when I feel like a failure next time…oh my!

**Side note, Lance worked with Jackson tonight, as I was sick, and had patience of the Dalai Lama. Lance’s work sessions focus on using screen time to encourage and increase verbalization with Jackson. Tonight though, he pushed Jackson into doing both physical and verbal tasks as Jackson had to work on a puzzle in order to get his screen time. It was a brilliant idea and after about 15 minutes of Jackson fussing, he got one piece in and figured out he just had to do one puzzle piece at a time in order to receive his screen time between each piece. They too completed a puzzle!

Happy Mother’s Day

From our family to yours, Happy Mother’s Day to all the wonderful, hardworking, never-give-up moms, you are all AMAZING!

And a Special Happy Mother’s Day to my brilliant mom & best friend.

“There is but one and only one, whose love will fail you never.

One who lives from sun to sun, with constant fond endeavor.

There is but one and only one.

On earth there is no other.

In heaven a noble work was done, when God gave us a Mother.”

~ Old Irish Verse

Our Autism is…

  • Having a village help us raise/educate Jackson – a school occupational, speech & physical therapists along with his special education teacher, two classroom paras and the school psychologist; then we have two speech therapists, a soon to be occupational therapist and our behavioral therapist and her intern that we visit occasionally at our local medical center; then least five daycare staff members working/caring for Jackson on a daily basis. These individuals are our family!
  • Using an augmented communication device (iPad) along with modified sign language, hand gestures and partial verbal sounds to communicate. There are times it is a sheer guessing game to figure out what Jackson needs or wants, luckily he has learned to point as well but it may not always be in the correct direction.
  • Bedtime snuggles and storytelling most every night…my ABSOLUTE favorite time of the day.
  • Having minor meltdowns to being told he’ll have to wait, since Jackson is still learning that to wait is not the same thing as no.
  • Setting up Jackson’s play/work area to mimic therapy’s to gain consistency and hopefully more progress between the two.
  • Making Jackson’s first dentist appointment and I ended up crying on the phone with the poor receptionist as I’m dreading this appointment. (She was lovely though, so understanding.) 12417725_10101200670214693_7779139982903979829_n[1]
  • Consistently wanting – even right after we get home for the day – to go ‘bye’ again, as Jackson loves car rides. But since gas isn’t cheap, we have realized we can trick him into going for a walk instead.
  • Trying to figure out two activities to get Jackson involved with over the summer. The need and want of getting him active and having us meet new families. There is a lot of activities to consider for him but in the same breath nothing really grabs me as an activity that he would like.
  • Maintaining a balance with Jackson’s persistent request for screen time, using the sign for movie plus the ‘mmm’ sound. It is with resilience that we deny and only give to him when appropriate or earned.
  • Loving chocolate milk and red vines.
  • Not being potty trained…yet, still hopeful. Always a work-in-progress, 3 years and counting. (Thank gosh for wine!)
  • Needing help with fundamental/functional skills; going to the bathroom, putting on or taking off clothes and shoes, washing hands, brushing teeth and using utensils.
  • Eating a pop-tart for breakfast everyday with an occasional request for a bowl of cereal on the weekends.
  • The sweetness of his face with such soft and kissable cheeks.
  • Having to ask for hugs and kisses because they’re not given freely.
  • A love that I never knew existed so deep and fierce, not only for our child but for my husband, my partner, my friend, my love.
  • Always feeling like I’m not doing enough or that I should be doing more for him…ALWAYS!
  • Looking into foster/adoption to grow our family instead of having another child ourselves.