Getting More Services

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Yesterday was a tough day for me. I was dealing with so many effects of Cooper’s disability. I spent over an hour talking to the county. I have decided to move forward with trying to get more services for Cooper. And this means confessing my whole life story to a random social worker that doesn’t know me or Cooper or sometimes anything about Autism.

Telling our story is a lot. It makes me feel trapped. Sad. Embarrassed. Like a whiner. Uncomfortable. I feel like I am begging at times. And that I appear weak. And then I feel loud and pushy. I feel aggressive. And after a phone call like that I want to either nap or bury my head in a bottle of wine. Both are never an option though.

He has developed quite a few new behaviors in the past couple of weeks that are beginning to freak me out a bit. He has started putting little objects into his mouth. We are talking game pieces, lego pieces, screws, batteries, string, tinsel or any other object that can be found on the carpet. We will walk into a room…he will see an object on the carpet…one that the untrained eye would never see…and instantly it’s in his mouth.

I am not sure how to baby proof for a 6 year old. That’s a lot to take in.

He has also started climbing cupboards and tables. On numerous occasions I will walk into a room and he is standing on top of a counter. Or even on top of a fridge. That is scary. It gives me a heart attack.

But I can’t spook him. I need to stay calm. Be relaxed. I chuckle when other people are over and Cooper does some bizarre dangerous behavior and they panic and I stay completely calm. I have too. If I spook him he will run. He will jump.

Other behaviors include an obsession with outlets, knocking over lamps, breaking mirrors, scissors, knives. Blah, blah, blah.

Here is what I have learned. The county starts caring when safety and health are a concern. And only then.

Well, I am a strong mom. I have a ‘I can do this’ attitude. I don’t need help. So in a sense I feel like I am giving up who I am when I ask for help. It’s gross. But I am waving the white flag. Sigh.

I can tell that getting more services is going to be a fight. Once that dawns on me I instantly feel exhausted.

As a parent I thought that once we got the diagnosis the rest would be easy. That is an epic misconception. A diagnosis gets you in the front door. After a 7 month wait of course. And a blood sample. And a 4 page essay on my vaginal birth.

So, more to come on that.

Also, I started a Facebook page for this blog! I have found so many great resources throughout this journey and I want to assemble them in one place and my personal facebook page is not the right spot. Click HERE to follow!

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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1 Comment

  1. Cyn on December 3, 2016 at 8:37 pm

    Can’t wait to check out your FB page:) Oh my GOD the endless advocating for services for our children is exhausting. I wish I could tell you it gets better but you just get better at it. I hate having to discuss my son to strangers too…trying to relate why we need more help to continuingly move forward. The school system has its own hula hoops too so belt up for the bumpy ride as he gets older:) Just know if you don’t ask you won’t have a chance at getting and so many parents don’t ask. I find that as I chat with Mom’s of neuortypical kids. As for putting things in his mouth….I know you probably know he’s looking for sensory feedback to calm anxiety…one of my daughter’s friends who has Autism..when he was in junior kindergarten he was putting things in his mouth and when teachers/parents kept stopping him from putting stuff in his mouth he then chewed on his shirts…the collars. So the OT at school got him chew toys he wears around his neck. It took awhile to replace the behaviour because he had to like the chew toy. Now a year later in Senior kindergarten he doesn’t use them and chews his nails…so they are willing to let that go 🙂 Kingergarten is a loud crazy fun part of school and too much fun can have our kids going for the “flight or fight” mode. One of my son’s friends would hide at school and not run which is a whole different kind of scary. Good luck and know you are doing an amazing job!!!