What's it really like raising Autism

If you've ever met one person with autism, you've met one person with autism. My life is different from what other parents face. But the situation still stays the same. I'm raising a child with autism. When Doodle was six she had no speech and had been in speech therapy sense she was 2 years old. Yes, she was even in early intervention. Nothing seemed to work. At 6 she wasn't potty trained at all. Poop smearing dominated my life. She was a crafty child and a backwards zip up outfit didn't stop her. What was normal for typical children were tasks that were impossible for her to do.

The first three years of an autism diagnoses are always the hardest because you don't know what to do, where to turn to or how to start some of the therapy that your child needs. Now that Doodle is in school she gets a lot of therapy I no longer have to drag her to. The sound of a screaming child in the back seat, screaming their head off to therapy. Her calming down for therapy and then the screaming all the way home cause she didn't want to leave if she did OT or she wanted more bubbles from speech therapy.

I use a lot of reinforcements to get Doodle to do what she needs to do. At home say for instance I know she will eat food. It's very rare I will see or even hear her have a gag reflex when it comes to food. If she wants dessert she has to eat her food. And yes it takes her forever to eat. She would rather be preoccupied with other things. She's a busy bee so to say. And since Doodle is progressing now positive reinforcement works much better. 

Her routine when she comes home is she has to hand me her school folder so it can be signed. I need her to give me her snack box so I can pack it for the next day. She needs to change out of her school uniform and dress for appropriate weather, putting her shoes in the shoe box where they go and put away her book bag. All before she is even able to get on the iPad. My positive reinforcements used to be small skittles given one at a time for each task completed. But she's outgrown that and can do at least 3 tasks before a reminder of what the next ones are.

Autism is a lot like raising a toddler most days. Some days you know what sets them off and others you don't. It's not all fun and games for me. And I like to think that everything is just a drop in the bucket. I also like to think that her accomplishment bucket is overflowing. Those are what I like to keep in mind the most.

The day before Doodle's birthday we were making a run to Publix for a few supplies. I asked what is tomorrow? She replied with Friday. Birthday. I asked who's birthday is it? And she replied with her name. For the longest time Doodle always had trouble with who and how. Usually, this is a point where I have to hold my finger to my lips and ask the question several times before she could get it. And this time she got it on the first try. I'm proud we have come this far. In all honesty had she not regressed when she was 10 years old she would have been further in progression at this point.

The age of ten for kids is the cut off point. At this point they will either continue with progressing or it stops. It all depends on the teacher. And no matter what amount of work we did at home, because her teacher had her for 8 hours in a day and I had her for 4 before bed time I wasn't able to successfully combat the damage the teacher was doing. When Doodle went on half days, which is a violation of the iep aka against the law. The damage had already been done. I was basically gathering work from the parent teacher store and teaching her on my own. Which is not the funnest thing in the world. With trying to make sure I had everything for my classes I was teaching, learning calligraphy and having to come up with a lesson plan of how I was going to teach my child and what she was going to learn. It was a lot on my plate. Not compared to what I am doing now! But it was still a lot considering it was like I was having to teach my toddler all over again. Grant it she wasn't a toddler, she was 10 years old but that's how far she regressed, to being a toddler. And having to relearn so much all over again. Hand over hand is no fun when your kid fights like Mike Tyson.

So there are good days and there are bad days. I am fiercely private and really am not comfortable with sharing a lot of my life. I'm working on that. Most parents come to this blog for information, but if I'm not sharing the good or bad how honest am I really being? 

I've gone from single students to working on accounts. A magazine that just doesn't seem like much fun as I'm always so tired and I'm getting into some really complicated pieces. I'm worried over will today be the day she freaks out on the bus and hurts another student or smashes her face into the window? Will she scratch her eyes out while on the bus cause the last time she freaked out of the bus, her eyes were the first thing she scratched at.

We all have fears when it comes to autism. And it doesn't help my job as her advocate and protector when in the groups that I'm in I'm seeing parents just giving their kids over to live in group homes or nursing homes all because they can't control them. Add the constant debate that rears it's head every year or so with parents saying they don't want to vaccinate their kids because they don't want a child with autism. That's a lot to depress anyone. Add on winter and the winter blues and that's quiet a lot for one parent to shoulder. 

Doodle is my rock. She's my laughter in the dark. She says some bizarre things which are out of place and seriously funny. Add in her Cindy Brady lisp and sometimes those words are hard to understand. And she likes to change what things are. Currently, she's saying that a lion fish is a porcupine fish. She knows the difference but she wants to change it. There was a time when she was little she called lightening bugs keke bugs. It was so adorable! And I really miss those days, but she's 13 now and they have to be called by their actual name. Sometimes it takes me 30 minutes to get her to say something correctly without dropping the L or the TH sounds. You just have to pick your battles. So there are plenty of days I'm like, cool whatever we've been at this too long already.

For instance last week while waiting on the bus Doodle was watching YouTube video's of fish on my phone. She says look mom, that's a porcupine. I said no that's a Betta and a porcupine. It took me a good minute to realize the fish needed to be called what it really should be called. I corrected myself. That's a Betta and a Lion fish. Dang it Doodle.

I don't know why she wants to change what some things are. Maybe it was because I let so much slide when she had limited to no speech. All I can say is 6 am with little sleep is too early in the morning for my brain to function.

So what is it like raising a child with autism? Some days are tiring. Severely draining. And other days it's a cake walk. She's my child and I wouldn't have her any other way.

See you guys on the flip side.

Back to school, Autism

I can honestly say that I am so excited about Doodle going back to school. I would say that I've been waiting for this the day after school let out, but it really hasn't been that bad this winter break. Sure she's done a lot of stemming and she's been sick and I've been sick. But it hasn't been that bad.

I went back to work on Saturday and Doodle goes back to school today. She's made a lot of progress during the winter break and I am elated!

I overheard her talking to herself and she actually slowed down and pronounced the word feathers. The th sound had always been a problem for Doodle. But she's more cautious now with how she is pronouncing things. And that makes me so happy.

I've spent as much time as I could with Doodle during the break while sick and trying to finish the magazine. The autism life is not always easy and the work involved makes me feel like I'm on teacher duty 24/7. But I'm starting to see progress again and that matters the most to me.

I want my child to succeed. And I'm going above and beyond to get her to that point. I'm still hoping that she wants to be doctor when she grows up. But if she wants to be an artist I will support that too. Whatever her future holds I'm willing to be there and support her to the best of my abilities. I always have and I always will.

If you are a parent and your child has just been diagnosed the most important thing to remember is the first three years are the hardest. All the appointments with doctors and therapists. Trying to figure out what would be the best thing for your child and it feels like you get no rest. Everything is jumbled together and if you can remember to breathe you're doing alright. There are bad doctors out there and there are bad therapists out there. If you feel like you're not being heard as a parent switch your child to someone else. That's the only way that your child has the stepping stones to succeed.

Today when I got up the first thing I sent off to the school was my letter for an IEP. I have the mitts our pediatrician sent to us. Cause those things were not the easiest to find here. And since these are technically our mitts, I want them back at the end of the school year just like I have to get the breathing machine from the school.

Well my day is already filled and I need to get back to work on the magazine and new programs I'm learning.

If you want to read the newest issue of the magazine you can find it here. This month and next month we are tackling a weighted blanket. Check it out. www.jsncreative.com/ezine Remember it's free, no need to use your email to view it and NO ads!

See you on the flip side!

Happy Holidays, Autism

With Doodle being sick and now out of school. The days have been daunting. Add making a ton of pom poms for a craft I feel will never be finished and getting the same crud Doodle got. It's just not been fun.

Plus side is we are ready for the Holiday which is later in the morning. Doodle opened her Christmas Eve gift up and she fell asleep watching Dragons. She kept herself on schedule, which made me really happy.

So as of right now, she's out. I'm typing this while feeling like I'm having a hot flash. I hate this sore throat and congestion but my energy is finally coming back. And I'm not sleeping so much. So there is that.

Another note is the doctor's office mailed the mitts that I mentioned in a previous blog for when Doodle has meltdowns. So of course that has to now be handled with another IEP meeting. But not until the Holidays are over.

So from our family to yours, Happy Holidays! May your day be joyous and bright.

See you on the flip side.

Self harming and Autism

Self harming is something almost all children on the Spectrum do. Some parents get lucky and the child will stop self harming. From slapping themselves, beating their heads on the floor to trying to remove their skin, it's not uncommon.

So what do you do when you find yourself in this situation? So many years ago when Doodle was little she beat her head on the floor. She was limited in speech and this was one of her coping mechanisms. Now that she's older and has speech it's not normal behavior out of her anymore. But during that time in her life she wore a ton of winter hats to soften the blows.

But we find ourselves in another boat. And we thought we had it pinned down. But that doesn't appear to be the case. Now we are trying to figure out why Doodle is trying to remove the skin off her body.

Until then we have to condition her to stop. And the only way to go about that is with medical mitts. Good news and bad news of this one. They work to help the person stop hitting or scratching their skin off. Bad news is, there is not a single medical supply store in the lower part of my state that carries them.

And believe me I have called around to every single medical supply store within 50 miles trying to locate some. Our pediatrician even has the prescription ready to go when I find a medical supply store who carries them. Unfortunately, couldn't locate one.

So I called out pediatrician and informed her and I'm at the point right now where I will just make some using genuine leather that I have on hand and the insides will be padded with warm fleece. She can think they are gloves. And she won't try to take them off to scratch herself, because I'm adding a velcro strap.  Then I received a call back from our pediatrician and they have contacted the rep for the medical mitts company and they are waiting on a call back from them.

That is the best news to receive. I will know that during these difficult meltdowns Doodle will be having a hard time scratching her face or her arms or her legs.

The reason I'm having to go this route is last week when Doodle got off the bus she looked like she got in a fight with a rabid dog and lost the fight. Her face was torn up! And it was one of the things she had done to herself according to the bus driver and bus aide.

Yes, the school is investigating the incident.

See you guys on the flip side.