It Matters

I’ve debated with myself on whether to post this or not but this story is quite poignant given it is the last day of Autism Awareness month. I would like to think that Autism Awareness is a thing of the past. That we as a whole have moved on to Autism Acceptance more so to Autism Understanding, but that is just not the case for some. There are still people that need to be educated and need to be held accountable for their prejudiced views of those with autism.

Is Jackson upset that we aren’t going to be there?

Why yes he is and his parents are furious that you even asked this question. There appears to be some individuals in our life that believe since J can’t express himself verbally that it is comparable to him not having feelings. Let me educate you on this, J feels and hears more than he will ever let on. He is consistently assessing his surroundings, taking in what and who is around him. The more that he is in these settings and around people he sees on a regular basis, the more he becomes comfortable with them. So yes, though J won’t be physically upset that you won’t be there, your lack of presence to him has been noted.

Here’s a great story about being present. J’s godfather, Kevin, has worked so hard on his relationship with him. It hasn’t been easy. J use to freak out when Kevin would come. He knew that Dad’s ‘other’ best friend was over so his attention would be divided and not directly on himself. Over the years we have worked to have J say hi to Kevin every time we are together, which we do for most everyone, and on occasional give a hi-five or knuckles. This interaction has really evolved there relationship to the point that J is genuinely  interested in Kevin and interacting at times without be prompted. It’s great to see this and we look forward to watching their relationship grow.

So back to the question that was asked, here’s my question for you based on your logic. If J doesn’t feel good but he can’t tell me so, does that mean he isn’t? If J is crying because he fell down but there’s no physical sign to show me he is hurt, does that that mean he isn’t? If Dad is working late but J can’t say I miss Dad, does that mean he doesn’t? Your question has been made more into a statement of what you think of autism, your lack of understanding, acceptance and respect for our son. It shows that absolutely nothing over the past years have sunk in concerning and supporting autism and more so J with his autism. We have interpreted your words to mean; your child doesn’t understand, so therefore it doesn’t matter.

Here’s the thing…IT DOES MATTER!

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Ramblings

IMG_3301I’m still on cloud nine that J was able to attend his first field trip a week ago and it was a success! I can’t begin to thank his special education teacher and paras that were with him every step of the way. Thankful that they calmed my own nerves about letting him go so he could have this experience, that they were prepared for what his needs/wants may be, shared their ideas and thoughts with me and these pictures afterwards. His school support is pretty awesome!

I know that not all parents with autistic children and then the children themselves have the same school support that we do right now. We are truly blessed at this time.

Now a week later it is raining, cold, windy and just plain horrible outside. Raining days always make me think of J. We let him, and usually encourage him, to splash and jump in puddles. Basically because it is an easy way for a little physical therapy and he enjoys the sensory output it gives him. We are on the verge of jumping with both feet off the ground. Still needs to be holding out hands when he attempts, but it’s almost another milestone met. This Spring’s task is to work on riding a bike! He’ll look so cute in his R2D2 helmet.

FullSizeRender1As for jumping in puddles, today that won’t be happening. First he was suffering from allergies (inherited from his Aunt Connie!) but now we are onto a Spring cold. Poor guy was pretty miserable this morning. I know I’ve said it before but I’ll say it again and again and again, this is the worst part about non-verbal autism. I can see that he has a cold with a running and stuffy nose, it appears painful squeezed and puffy eyes but like this morning I can only guess why he didn’t want to eat his breakfast. Was it because of his cold, or does he have a stomach ache too or possibly a headache. Argh! It is the worst! So I got some meds down him as best as I could, no fever and to school he went! He ended up have a great day.

As for me, I’m finally getting out of the slump I was in. It did help that I celebrated my birthday and IMG_3346my husband did a wonderful job making me feel so special this year as he does with every birthday. I was able to celebrate with my family too, who I all adore especially the newest member, my new nephew Declan. And I got to spend time with friends, wining an evening away with laughter and did I mention the wine, also going out for lunch dates to catch up. But the thing that has helped the most is how I’ve been communicating with J.

Talking with J instead of at J has become a priority. Talking him through all his morning tasks FullSizeRender2no matter how much it feels repetitive and then through his evening issues when his insistence for screen time out weighs rationality has really helped. Talkin to him in a calmer and even lower tone has improved our interactions and therefore this mama has started to mediate (literally). With his sensory issues to noises and even emotions working with this method of communication has made me focus on keeping myself in check and thus improved everyone’s mood.

Lastly, the adoption process is rolling along slowly but surely. We have selected 3 agencies to pick 1 from to start training classes in May. Though we understand the process and importance of these classes, it is kind-of a bummer. But in 10-11 weeks from starting classes we should be certified foster parents. So looking forward to getting there!

 

The Life I Lead

It’s much harder than I ever thought it would be. The tears can be abundant and quick to come but so are the unexpected smiles and laughter. The good days are good and the rough days are awful. Being an autism mom is simply hard.

I’m tired about 98% of the time and not the ‘I didn’t get enough sleep last night’ tired but the soul tired where my whole body is exhausted. There are many times where I think and even say ‘I can’t do this’. Can’t take another slap to the face, hit to the arm, ear splitting scream, meltdown on the floor, freak-out in the car, 3am wake up call, pulling of my shirt or dodging an item that has been chucked at me. I know these behaviors are normal for normal children but they are intensified to unknown limits for our child with autism.

I live in a consistent anxiety bubble. Anxious about what will set him off, hoping that everything goes as smooth for him because then it will for me. Always looking into the next minute to see that all is okay. This anxiety bubble is especially apparent in the mornings with how J will be today. Can I talk him through getting ready, will his picture schedule work, will having his music on help or deter, will we get through this morning without any fights?

The public speaker that tells you to stretch in bed before you get up each morning, I can totally do as my day hasn’t officially started, my feet haven’t touched the floor. However that part about always smiling and saying that you’re great when someone’s asks how you’re doing. What a crock. I can’t lie anymore because there are days I’m not okay, I’m barely hanging on.

I’m always worrying about if I’m not doing enough or doing too much, odd concept but sometimes I need to just step away and let him be. When things are going well, I have this euphoric need to keep it going. Analyzing what I’m doing well and what is working so I can keep this trend going for as long as possible. My life is in a constant state of flex, always changing to the ever evolving J. I love the times when all seems right in our world but I know they are not meant to last and hardships will be upon us again.

I write this not for pity or concern, but for understanding and even acceptance of parent’s caring for their special needs child(ren). Our struggles are completely different, usually more intense than those of parents with typical children. We might have an off day or 5 but your smile and kind words are more appreciated than you’ll ever know.

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Why We Walk

We walk in the annual Autism Society Puzzle Walk because…

This is our band concert, our swimming meet, our cross-county or track & field event, our soccer game, our choir concert and/or our basketball game. While we hope that some day J will be able to participate and show interest in any of these activities, right now it isn’t in our foreseeable future. This is why we walk and promote others to walk with us, not only to spread awareness and acceptance of autism but because this is an activity that J is happy to participate in.

We walk to support our J with his autism and all individuals affected by it. We walk for those that love J to come and support him. We walk to support one another, husband and wife, on this crazy journey. We walk for the parents that need to know that they aren’t alone on this adventure, there are others walking right besides them. We walk to increase understanding and acceptance about all spectrums of autism.

I look forward to the walk each year. It’s a time to come together with those we love to support our not-so little guy. We make a day of it! Inviting all those that participate in the walk back to our home for some socializing, food and drinks. It also gives everyone the ability to interact with J a little more. There is usually a lot going on at the walk it may be hard to do so effectively. Plus it encourages him to use his words more even if it is just a simple hi.

We want to thank all those that are walking with us next Saturday and those that have donated to the Autism Society. It means to very much to us!