Master juggler at the circus of life

All parents are the wearers of many hats. As a parent with a special needs child,  you become the master juggler at the circus of life.

Currently, I am desperate for my youngest to get into Occupational Therapy (OT) and Autism Behavior Analysis (ABA) which has helped him a great deal in the past. It also provided me some tools to work with him on my own as I was able to see the therapists at work. Since his OT resigned in July, we have not been able to find him a new therapist. Double whammy, his ABA line and coordinator both left around the same time his OT did. He receives some therapy at school but it is not enough and I do not partake in that. The state where we live has a tremendous shortage of OT's and the demand for them is so high that he is on a waiting list 3 to 4 months out. There are plenty ABA providers but there's also a waiting list and difficult to find one with a clinic. The place I'm dealing with seems to have lots to staffing issues.

Frustration levels can often hit a serious high when you are making all the calls, doing all the research and trying to find someone that has a slot that fits his/their schedules. With two other kids schedules to consider, it can get overwhelmingly frustrating to schedule things. It doesn't help that because E is still so young he is still easily distracted and needs to be in a place that is separate from others.  Distractions of "fun" equipment need to be minimized. By fun, I mean all the swings, beams, slides, etc that the OT gyms tend to have.

Currently, I'm in a battle with local ABA provider that has a clinic. Their lack of concern for my son is well, concerning. It's been since July that he has not received services despite the fact that I made sure all the paperwork was in place. Now I really shouldn't call it a battle since no one actually responds to me. The only effort is from my end. The Early Autism Project has failed my son for the past 5 1/2 months. Allowing him to slip through the cracks and not get the services he requires. I've done just about everything except send smoke signals to them demanding that he receive services. Not until you threaten to call the state and file major complaint, people start to respond. That's my least favorite hat to wear because I understand that with complaints comes the risk of people losing their jobs. I don't want to be that person but it's my son, so I do what I can for him. Then, when they come with all the services you need, you're not sure you want to deal with them because they have not handled things professionally. But you know you have to cave because what other choice do you have, minimal. 

At the end of the day, we are not just parents. We are different kinds of therapists, a secretary, record keeper, Accounts receivable and payable, insurance coordinator, nutritionist, mediator, litigator, transporter, mind reader, translator,  master healer of boo boos amongst many more titles. The most important is warrior parent. Fight for the right of your child(ren), make sure they get all the services they need in the time in which they need them. It makes all the difference.

Would I change my life? I'm not going to lie, there are days where I just feel like checking out. When everything seems to be just a little bit too much at once and it feels like there's no relief insight. That if one more thing is piled on I just might drop all the balls I'm juggling. That to many sleepless nights have added up and you're just exhausted. Then my son will come up to me and say "Mama, Huggies" with his perfect brown eyes.  I remember how last year he couldn't even say mama and how he would refuse my hugs. This makes it all worth it. So I go on. 

My son has autism. There's no changing that. He isn't broken, he is just different.  I am stronger each and every day for having him in my life. We count our blessings. 

With Love and dedication, anything is possible!

Signs that Early Intervention is Working

Nearly a year ago my son lost all speech. He never said mama,  stopped saying daddy and rarely babbled. It's the reason we had him evaluated and sought out help for him even when others were saying "he's just a bit behind." Even our pediatrician didn't think anything was wrong but my gut new better. 

I would have given anything to be wrong but taking the time to prove it to myself turned out to be a good thing. I trusted my instinct, I wasn't wrong and though that was disappointing, we got him the early intervention and today something awesome happened. 

E's ABA therapist was over working with him on requests. 

ABA: Would you like a show E?

(He often gives signs or brief 1 or 2 word answers.)

E: No, I wan Wall-e and Eba. (No, I want Wall-e and Eva.)

I heard it clear as day. Had I not been in the room,  I wouldn't of believed it and more importantly, I wouldn't have heard it. I cried. My son had spoken his first true sentence and it was a spontaneous response. It was so awesome. 

Then E topped that. He knew what he had accomplished, I seen it in his face. I was so overwhelmed with emotion I had to walk away briefly. When I came back into his sight, he walked up to me and said "mama" and dipped his head. A sign that he wants affection. I kissed him and he raised his head and arms, now he was asking for a hug. As if he knew I needed it more then he wanted it. Either way, I happily obliged. It was a great moment. 

He went back down and back to his ABA to watch  Wall-e. We were beaming with pride. I still am.

He has since reverted back to his normal two to three word phrases but I know it's in there. His mind just needs more time to learn how to get it all out more consistently. 

All I can say is trust your instinct, fight for your kids, be their advocate and get them the help you think they need. In E's case, Early Intervention, Speech and ABA helped him get to this moment. I am thankful for his team every day. 

Just a note of thanks:

Mrs.Sallie you've helped me as a mother, a friend and family advocate. My son may not have received this help early on if it were not for you telling me to trust my thoughts. "A mother knows..." Thank you for supporting me and centering me as a mom. I know you will say it is your job to help but I know you go far beyond that. You are truly an angel on earth.❤️

Ms. Jill, I can't say enough about all you do to help and encourage E to speak. You are so great with him. You have become a very special part of our family and we are so grateful to have you as E's Speech Pathologist. We know E loves you just as much as we do. You helped make this happen. You Rock! 

Thanks for following and have a blessed day.

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