Sunday, May 20, 2018

Recovery is on the horizon-- Flashback to 2015

This post is a flashback to something I wrote on Facebook in December of 2015.

Recovery is on the horizon for us. 

Autism treatment for us has always been about taking two steps forward and one back. Right now we are in a forward movement for my son thank to Dr. Usman's office. Dr. Miller suspects PANDAS and put Hayden on an antibiotic, in addition to Nystatin again for yeast that showed up in his testing. In addition to changes made to his supplements. 

Huge gains the past few weeks. He seems more typical. Still needs a 1:1 aide. Still spinning in circles. Suddenly noise sensitive again.

But he's going full time gen ed! I've been fighting the school for this for three years and they keep fighting me back. A month ago they emailed and SUGGESTED IT THEMSELVES. And they chose him for a main role in the Third Grade Christmas play. I thought, who thought it would be a good idea to put the kid with autism (who hates crowds and loud noises) in front of a huge crowd? But you know what? I think he's going to nail it.

The thing that pushed me over the edge to start Biomed was a recovery video. Proof from other parents that it works. So I feel I need to pay it forward.

Biomed works. Keep it up Warriors. I know how it feels when you're in a backward movement, and things seem out of control. Scripting, aggression, self-injury, diarrhea, random red spots, suspended from school. Due Process. IEP meetings that are so negative, random people suggesting meds, people at the store giving you rude looks, random people telling you "he doesn't look like he has autism," bringing your own damn cupcakes to the birthday party for the 387th time. Your kid coming home sad from school because they made gluten-y gingerbread houses at school but the teacher didn't bother to ask you to send in GF so now you have to go get the ingredients and make one tonight. Your kid coming home from a relative's house (who isn't completely on board) worse than when you sent them. 

People I have BEEN there. On most accounts I'm STILL there. But I keep truckin'.

None of us can afford this. We sacrifice where we can. I rarely buy myself new clothes. No hair stylist, no nails done, no fancy jewelry. But I paid to take my kid to one of the top Autism clinics in the country and it's paying off.

My advice to anyone still reading at this point? Join the Facebook groups. Read every thread. Even if you don't think it applies to you. Read every comment. Sometimes the comments are full of little nuggets of info that WILL apply to you. And sometimes you'll need that info in 6 months, and you are aware that it exists because you read it earlier. I heard about PANDAS 4 years ago and didn't think it applied to my son. I'm so glad I had an idea about it and where to start looking!

Ask questions! And don't take any one person's suggestions/advice/comments too seriously. Take what is said, take what your doctor tells you, and then go to google. Look for RESEARCH articles, not just opinions or news stories. Listen to your Mommy gut; if you don't think your child is ready for something, even if your doctor suggested it, ask more questions! You can always do it later but you can't UN-do it.

We can get there! Keep going. I love all of you for being here. I love my Facebook group friends for asking questions, for answering my questions, for introducing me to the right groups, for listening.

2018 Edits: 
Hayden nailed the Christmas Program in front of hundreds of people! He was funny and said his lines perfectly. His social skills are blossoming and he's been more conversational lately. He doesn't have much noise sensitivity, unless it's his sister's crying. He no longer has a 1:1 aide! He's doing amazing in mainstream class! So much amazingness.  Autism is Treatable.

Recent trip to the Children's Museum, where the kids put this statue back together in their own silly way.



100,000 Page Views!

Hope and Lavender now has over 100,000 page views!  I never imagined when I started this blog that it would reach so many people and touch so many lives. Because of this page, so many have learned that autism is treatable, and have begun to heal their own children.



Thanks to everyone who checks in from time to time. Life as a working mom is busy and I don't post as much as I'd like. I do plan to check in and update you all soon. 

In the meantime, check out Hayden's original song, WOT.  Shared with his permission.


#AutismIsTreatable!






Wednesday, February 7, 2018

What Autism Looks Like

This is why I have a blog and a YouTube channel. So many times since Hayden's diagnosis I have been told by complete strangers that my son doesn't "look like" he has autism. It gets really old. What does autism look like? Would you say that to someone with a different disability, that they don't look disabled?

So I created a YouTube channel to show what autism "looks like." (Essentially, to show that there are sometimes ways to identify a person with autism, such as scripting or stimming, but sometimes autism doesn't have a "look. Sometimes it's a combination of characteristics that makes up that person's diagnosis. Things you can't see by looking at them.) But still people don't get it. I would love to add more videos to this channel when I have time, to help show the range in what autism really is.

Recent comment on my YouTube channel:
"With due respect and comment based on only what I see and hear in the video...the child/Hayden look perfectly normal to me and even in his earlier videos when he was around 2 years old he looked very normal...I see the problem is that there is not enough understanding on what is normal and there is lot of over diagnosis of autism by inexperienced practitioners and therapists...parenting can be tough and unfortunately we have a medical industry that has commercialized this to extreme levels...I listened to my mom and experienced parents and that helped me to keep sane as I went through this constant fear built by therapists about our child who turned out perfectly fine without much intervention..."

My response:

Thank you for your comment. When my son began therapy at age 4 he was put through a series of tests in order to be diagnosed with autism by a psychologist. He was then tested by a BCBA at an autism center and was shown to have significant deficits through their testing. He had only a few words at age 4, was having constant GI issues, severe meltdowns, sensory defensiveness, and was missing many of the skills a typical child at age 4 would have. I have shared about our daily struggles through my blog if you would like to learn more.

Today he does appear to be a typical child to many who only interact with him for a few minutes, but he still lacks enough communication, social, self care and other skills to require continued therapy and special education services. He still also needs medical services through a specialist.

Sometimes you have to spend more than just a few minutes with a person with high functioning autism (or any disability) to become aware yourself of the needs that person may have. These videos are simply a snapshot into our lives. Sometimes the blog posts give a better description of my son's struggles and successes.

Furthermore, minimizing a person's disability, or arguing that they are not in fact disabled, is hurtful to them and their family members and does not help anyone. If you would like to learn more about autism and the latest research, I would suggest visiting the Autism Research Institute at autism.com. Again, thank you for visiting to learn more about autism.





Sometimes I question continuing on with the blog, wondering if the work I needed to do has been done. But it appears that there is much work still to be done in order for everyone in the community to embrace people with autism and provide them with equal treatment. So, the blog will continue at its slow and steady pace. Thanks as always for reading!



Monday, February 5, 2018

2018 Is Going to Be An Amazing Year

Hayden has made so much headway recently and we're excited to share!


Progress at ABA Therapy

Hayden's ABA therapist says that 'the things that he has needed help with lately are following directions right away and not interrupting others when they are talking. These are pretty small! He has been on top of managing his own frustration and anger and with verbalizing how he feels. The times that he has needed more help with these things have been pretty few and far between. What I notice the most is that small things (ex: not being able to tie his shoes) set him off and if anything else happens immediately following this small frustration, he has a bit more difficulty bouncing back. Again, though, this is not very often at all. He has made so much progress.'


Progress on Goals At School

Hayden's school reported that he is not behind academically. He is on track to pass the ISTEP again this year. He is in a regular classroom with some special education assistance. He no longer has a 1:1 aide full time.

Fleeing Goal - This was to decrease the amount of times Hayden leaves the classroom in frustration from 3 incidents per quarter to one or no incidents. Hayden has been able to decrease the number of times he flees to an average on 1 time per quarter. When Hayden flees the classroom, he either flees right outside his classroom door, or goes to the Resource Room.

Expressing Frustration - This goal was to continue to increase his stamina to self-regulate his frustration (refrain from yelling out, throwing his glasses, throwing his pencil, breaking his pencil, throwing his supplies), by displaying appropriate responses or using his strategies at least 80% of the recorded incidents. In the 2nd 9 weeks of school Hayden displayed 6 incidents that involved a verbal outburst and physical aggression where he slammed doors or threw objects. Of those recorded 6 incidents he did not use his strategies initially, but staff was able to provide a place to calm down, give sensory input, and regain compliance by completing some work in the Resource Room and then returning to class. 6 incidents in a 9 weeks is a great reduction in these incidents: in the 4th quarter of the 2017 school year, for example, Hayden displayed 50 incidents! This is a huge change for the better!

Working hard on his science fair project
Progress at Home
We have seen a huge reduction in aggression, self injury and property destruction at home. In fact lately they're almost non-existent. Hayden had a wonderful break and and great transition back into school afterward. There were no behaviors the first day back which is amazing for after a long break. He has been adorable interacting with his baby brother and cousin, showing so much interest in them.

We have noticed some amazing things from him in the last few weeks as far as initiating conversations, being flexible, using restraint when he's upset, and vocalizing his needs. Last week at the doctor I was saying how the combo of ABA and medical therapies has really helped Hayden. The doctor said she felt like the medical therapies played a huge role but that she was biased (she was joking a little.) Hayden was on his iPad but was apparently listening and said, "But Centrality helps me!" I said yes, I know, we are just saying both are helpful. He said, "But I don't want to stop Centrality, I have so many friends there!" We assured him that we don't want to stop Centrality. But I thought it was interesting that he was listening along, because a year ago he may not have, and that he verbalized how important Centrality was to him.

ATEC Score

My dream for Hayden is that he is able to live as typical a life as possible. This means to be as independent as he can in social situations and with self care, with no aggression or self injury, and doing well in school and future employment. 

One way for parents to measure progress is through the ATEC (Autism Treatment Evaluation Checklist.) I have shared this link on this blog in the past if you want to check it out. The ATEC is not a diagnostic tool but one to allow comparison of scores over time, thereby comparing growth or regression based on various interventions.
 
Hayden's first ATEC score before beginning treatments in 2010 was 102 (out of 180). His score last week was a 20! We are so very close to Recovery for Hayden and we're all (including Hayden) super excited about his progress. 

More information on the ATEC can be found here: www.autism.com/ind_atec_report 
To take the ATEC, visit www.autism.com/ind_atec


Personal Growth

I'm excited to share a story with you in a future blog post. Stay tuned!


We can't wait to see what else 2018 has in store for Hayden. Thank you for your continued support!

Photos from Facebook

I apologize for the broken images on past blog posts!  Apparently saving images from your own Facebook page to put them on your own blog is not allowed, and they will be removed.  😠  Hoping to go back through and get these fixed. Thanks for your patience!