House of A Writer

Welcome to my blog where I share my special needs parenting journey with my heart, truth, and love, one story at a time. ❤️

It takes a village

I recently took a physical for life insurance purposes. My nurse was kind and polite and when I was asked why do I take an anti-depressant when your otherwise healthy? I simply replied “I’m a special needs parent who’s always advocating, teaching, learning, researching, and loving my family I have to cope somehow.”

The look of surprise that crossed his face was something that I’ve seen before. I’ve had people ask me how do you do it, deal with autism, ADHD, ODD, SPD, and a genetic neurological disorder that affects everything from motor skills, to recessive language delay, to selective eating issues due to textures, smells, and shapes of food.

I have no other answer other than I don’t think about it I just do it. All of it needs to be done always. I need to advocate for my children so that they can have access to resources, funding, and therapy inside the school system and outside within the community. I need to keep up with the latest research on my son’s genetic disorder so I know how to help him specifically and what other co-morbidities I need to be aware of. I also need to teach him about number and letter recognition so he can begin to print what he knows. I have to deal with regression as it’s the part of his brain that’s affected by his micro-duplication.

I need to check, double check and help my son re-learn when he’s lost his ability to process what he’s learning in school. He’s come a long way with his progress from screaming if I tried to help him hold a crayon in preschool to printing his name confidently in elementary school. Now his world’s growing bigger as he attempts to make sense of all those letters on the page and learn to read. I remember what joy I felt when my Mom introduced the magical world of books to me.

I long to see that light in my son’s eyes that I know appeared in mine. Yet I see him stumble on three and four letter words and in frustration throw the book across the room. At the moment we’re working on his reading comprehension so that he can create the story from what he sees illustrated on the page. As for the phonics and word recognition I’m using a multi-sensory approach as well as his special education resources teacher does in the classroom.

1. First I print the word then I get him to to tell me the letters and we sound it out and say it together.

2. Next I have him build it with his alphabet letters on the line below.

3. After he prints the word with his pencil.

4. Then we go over the word and use it in a sentence and repeat with the remaining words.

Sometimes he only has enough patience for three words but to me it’s quality over quantity. I learned the Write, build, print method from an amazing website called Understood. I love this website as I now have a resource that’s there to help us both on our learning journey.

When I see the furrow in my son’s brow as he concentrates to maintain his alligator grip on his pencil I marvel at his independence. He sings a little song as he does so. Alligator grip then my pencil doesn’t slip. Then when he’s completed his task his beautiful smile makes his whole face light up. I’m excited to incorporate building Lego into his learning as we work on math next.

I have five months to prepare him to catch up with his peers and continue onto the next grade. He has an excellent team at school who’ve been there to help with his frustrations, transitions with the use of visuals and successes. My son teaches me just as much as I’m teaching him this why I choose medication for myself and seeking the guidance of a therapist.

No parent is an island and it takes a village to raise a child. When it’s a child with special needs it takes strength, courage, and a bigger, non-judgemental village. I need to be able to cope with this roller coaster of a life we lead. I need to stay on task and ten steps ahead of a sensory overloaded meltdown. Most importantly I need to take care of myself and repair what I feel is broken. My mental health and the well being of my children depend on it.

Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month’s Voices of Special Needs Hop? Click here!

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Ready, set, go! 

I have so much to do and I’m already overwhelmed thinking about it. I have never ending overflowing laundry baskets and I’m totally my laundry room’s bitch for the past two weeks. I’ve got a wicker basket full of stuff I need to do, and the paperwork monster is threatening to grab me in a choke hold till I cry uncle! I know I can take things one day at a time but it’s my brain that never shuts that doesn’t get that message. 

Last week I had a meeting with my respite worker she asked me if I was a list person. I replied yes I love making lists, a lot of my blog topics start out that way. She asked me to write things out instead of using my notes app. So I did and it’s amazing how something so simple, can be so affective. Today I made another list and each day I cross off my accomplishments. It feels good to see that I’m taking care of things, but my overwhelm is with all the things I still need to do. It’s easy for me  to dispense out advice to friends and say look after your priorities and the housework will be there tomorrow. Like death and taxes laundry will always be something you can count on happening. 

I feel like I’m at the start of the race and I’m waiting for someone to be standing there with a pistol saying ready, set, go and I’m off like I’m lit on fire when I hear that shot go off! On one side of me is my calendar jammed with appointments, and on the other is my phone loaded up with texts, emails, and blog topics I need to return and write. At times we’re neck in neck and I literally feel the sweat pouring down my brow. Then I’m wiping it, dying of thirst, and I fall behind and struggle to keep up. 

There are many phone calls to be made, test results to track down, letters to be written, paperwork to be signed, and faxed. I’ve literally been held paralyzed with anxiety that I have to complete all the things and do it record time. The finish line appears to be so far away and my eyes are getting blurry as exhaustion starts to overtake me. Must be the fact I’m dehydrated and in need of something to quench my thirst. And that pesky cataract starts to bother me when I’m tired. So I start veering off the track and daydreaming while I can scarcely see my opponents in the distance. My vision doubles and I start to yearn for my couch. 

There I can have my fuzzy blanket and security while watching Lawrence of Arabia and enjoy eating a bowl of ice cream. This parenting gig can be hard at times. Add in a list of objectives, goals, and lists and you’ve got another job. Sometimes I just want to say &@@@ it and leave for someone else to do. But if I do that then my children won’t get the services they desperately need. I can’t miss out on that, no matter how mentally, emotionally, and physically, exhausted I am. It’s not fair to them or to me if I fail, there’s a lot of resources and a lot of families in need as well. The autism journey can be a bumpy one at the best and worst of times. I’m learning new terminology everyday and as my brother says ATL’s (another three lettered acronym). 

He told me that last week and I laughed so hard, for about fifteen minutes as my life has become all about the letters. When will it all begin, when I’m assessed for funding, get a case worker assigned to me, or get a therapy team in place. There will be more people joining our small circle, lots of transitions, more appointments, and more trips into the city. I will be requesting a lot of home visits in the beginning. Getting my youngest son prepared for these upcoming changes and strangers in our reclusive world. This is never easy and I can use all the PECS (Picture Example Cards) available, but if he has anxiety about it all it’s just not going to happen. 

I honestly don’t know what to expect from branching out into this new world of programs, people, and personalities. I’m thinking as positively as I can and preparing and educating myself as well. So off I go into the sunset leaving worn out ideas, speculations, and false truths behind. From now on its facts, concrete results, and verified diagnosis’s that will matter. I owe it to my children to get them all the help I can. And I owe it to myself to know and believe this age old wisdom from Yoda. That little green guy’s wisdom has touched my life with its simple but gifted advice more times than I can count. Special thanks to http://lindaghill.com for the writing prompt. I couldn’t think of anything to use it for till now. It’s funny  how I just looked at this picture and words started flowing. Green man wisdom for the win!

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