The start of a New Life…

You know when I think back from even ten years ago to where I am now, I find it very hard to believe how far I have come. How life changes, how priorities change you. The second I found out (miraculously!) I was pregnant I became a Momma and my whole life changed. Not that the journey wasn’t without struggles, heartaches, and sometimes even fear. My friends and I suffered a loss when i was about six months pregnant that sort of changed everything. Losing Tyler made the majority of us grow up and realize, we are adults and the consequences are real. We aren’t immortal. It also lended my children their names. Tyler and Hunter… my Monkeys.

I was joking with a friend just yesterday about how in the moment I saw my children for the first time, I had never felt for someone so strongly, never seen anything so beautiful in my life. I mean that rush of emotion is so powerful and overwhelming. Now in hindsight, they looked like little wrinkly old men… still cute though. They changed everything… I started living my life for them. I suffered through the constant feedings (twins on the same schedule is so tricky!) and the sleep deprivation. I was amazed and fell in love with their little laughs, Tyler’s angel smile and Hunter’s devilish grin. Cuddling them close I knew they were mine and I theirs… I would do anything i could to be the best Momma I could. Now let me state that before my Boys i was a bit of a wild child and I thought I couldn’t have babies so i never prepared. I didn’t hold children, babysit, or change diapers. But I did everything I could.

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I put in place a routine noticing that my boys thrived on a set schedule. This was my first clue. As the milestones that were supposed to come never did, I started to get concerned. They didn’t talk, not even babling. They would make these guttural little noises at each other that grew into a little language that grew between them, but no words.  My pediatrician seemed very unconcerned. I think all parents that suspect something is wrong have heard thee following statements.. Oh each kid goes at their own pace. Oh twins are known to have their own language and it slows speech. I wouldn’t worry. Well I did.. constantly…I knew something was wrong. I tried to get them into sort of a pre preschool program thinking someone else would see what i saw. I knew. My brother Duane is Autistic and lives in a center… I knew but no one listened to me. I think because i was a first time parent, they thought i was being over dramatic.

Then it got worse. With the terrible twos (which started at one and are still going at four i want to mention!)came the meltdowns. The extreme reactions, the destruction.. all the while with minimal communication. They couldn’t understand me and I couldn’t understand them. I tried sign language, we did flash cards, I read to them every day, we never used baby talk.. I did everything I could think of. Constantly researching on every site i could find new techniques or the whys. Now during this time which we are just kinda coming out of to be honest is when people (meaning well i think) starting the , “Well my brothers kid started talking at Two!” or the “Well what haven’t you done?”. I was very blessed to have had a friend staying with me during this time period and he helped  a lot, but i think watching my boys took it’s toll on him and our friendship. My boys are amazing.. so funny, sweet, sarcastic, cheeky. On the other hand of the coin comes the extreme meltdowns over the slightest change in schedule, taking away a spatula, saying no, sometimes you have no idea why and they will sob for an hour and nothing you do with calm them.. Or the middle of the night waking up screaming and you have no way to calm them. You have to stand close but not look at them or touch them… just be there.. and we just didn’t know.

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By the time they entered preschool it was just me and them, and i knew it was just a matter of time for someone to see what i saw. That it wasn’t just behavior. They weren’t just being spoiled brats. That i was doing the best i could, though it may not have always been enough. And within two weeks I got the call that they would like them to undergo some testing. It was so validating in a way, to finally be heard… to FINALLY have someone else see what i see and start putting a  plan of action in place. When that testing came back it was with not a diagnosis but they suggested there was some very serious sensory issues. I started researching Sensory Integration Disorder… while it sounded close it wasn’t 100%. After that testing we decided to send them to a special needs class , one in the morning and one in the afternoon half days where they could get their therapies more frequently. I felt we could be a little more hands on this way. They also suggested additional testing which we did. This whole process I was preparing myself. Then we got the diagnosis, both boys had Moderate level Autism. Now we could finally make a plan.

After this part it’s been a flurry of paperwork getting them in every program I can, setting up their plan for next year, taking care of SSI, and applying through the OPWDD. I decided to be their advocate and handle their funding outside of school for therapies. This way i can pick and choose how their money is spent and who it is spent on. It’s a lot more work then letting an agency handle it for you but I like the thought of being that involved. There is also a few classes involved you have to take to be their Advocate which I have taken.. I already have my people set in place for when the funding starts. I just want to give them every chance I possibly can. Isn’t that what us parents do?

Even now as I type this the boys are being incredibly loud, running back and forth with their constant energy ( It makes me more tired watching them bounce back and forth ten hours a day!), Roaring as they play with their dinosaurs.. but you know what? When they need a drink.. they can tell me! Little things like that are huge and they have come so far! The beginning of this past year, they were barely saying 2 words. I would tell Hunter to say please and he would scream. I am so proud of my Monkeys!

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So that is my story, well part of it. As i get further along the process, I will post more of the steps i have to take and hoops i have to jump through. Leave me a comment either here or on facebook and answer this question.. Would you guys like to know more about the technical side of this process? Like how SSI works and the OPWDD? Working with their teachers and therapists.. where to start? Let me know!

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2 thoughts on “The start of a New Life…

  1. The best thing that ever happened for them was to have *you* as their Mom, and I have witnessed that firsthand. It’s a long road ahead — but that’s true for every parent! (just ask me) — and the only difference is in the path you three will follow. I’m curious if there is anything friends and family can do that is a help, since it seems that babysitters would need to know the boys really well to avoid botching the schedule and coping with a meltdown.

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    1. Well that’s one thing if we go through the process that I can get .. Respite… I already have my people in mind and I am literally counting the minutes lol You know i do have my Momma who helps as much as she can and a few other friends in case of emergency but you are right its hard with the meltdowns and speech issues because they have to be able to know what they want.

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