Dealing With Society & Autism

Autism Awareness & Society Please refer all ** marks to Disclosure statement at the bottom of my post, also feel free to visit my Disclosure Page page on the bar on the right hand side of my blog. Links may be included in this post. Summary: Below I have described some of my experiences in society with individuals in society reacting to Carter's autism and how I handled the situation. I also have listed a few strategies you can use if these types of confrontations happen to you. Lastly I have included a bit about my family life for the week. To skip to the autism related topic "Techniques that help address the matter at hand, without being rude". My experiences with society that is not aware of autism: I have a few stories to share with you of strangers that approached me and tried to tell me exactly what to do with my autistic kiddo, or just said some rude remarks. I'll admit, some of these I did not handle well, which I believe if you have experienced this, you can relate. I am working on being more patient, responding with less, and keeping my cool. Hey, I'm not perfect, upsetting a mama bear is never a good idea. Stay sassy but keep it classy! On to the stories: The elderly man at the dollar store: Carter and I went to the dollar store for some fall decorations, nothing too fancy. I find spending a buck on a decoration is a lot better than getting one centerpiece at a department store for $30 or more. I mean, with kiddos, having nice stuff is great, however, as things get crazy around my house, sometimes they get ruined or broken.  Carter begged for me to buy him a toy, which he used to frequently do upon shopping. Needing to break him of this habit, I endured the power struggle every time and told him no. This then lead to a meltdown with verbal and object aggression, which at the time it always did. So, he had his meltdown, and in the middle of that, while I had Carter in a child's control position, (I'll save those for a future post) an elderly man approached me and began preaching his religion, telling me how to parent my child. I responded back to him, "He has autism, he does not understand.". After that, I ignored this man and continued the control position until Carter calmed. Once he did, we bought our decorations and left the store. I was very upset, I thought to myself, 'How dare this guy tell me what to do with my autistic kiddo? Rude!'. Back in the day of baby boomers, autism was not a diagnosis. I have heard now in this day and age, even the elderly are being diagnosed at this point. I am sure the majority of them do not have autism awareness, and I should not be upset about that. The gentleman at the gas station: Recently Carter came with me to the gas station. We went inside so I could pay for the gas and Carter saw a big box of suckers. He tried to take the whole box with him when it was time to leave. There was a gentleman in line behind us and he started laughing as Carter was screaming demanding I buy the whole box of suckers. Again, the power struggle. I told him no and this time he eventually did calm after a few minutes. I just glared at this guy. I told him "He has autism." and we started to walk away. The guy stared at us, eyes wide, and tried to apologize. I should have accepted his apology and told him to have a good day, however, I didn't even turn around and face him. I just kept walking with Carter in tow. I was pretty angry that this guy laughed; he probably did not mean to come across as poking fun at my son, however, that is how I interpreted it at the time.  Newly moved in neighbor: We live in an upper apartment. Within the past two weeks new neighbors moved in below us. As it was a Wednesday, last week, my parenting coach was at our apartment for a home visit. She coaches me through the struggles with autism I have as a parent. Carter was upset that I would not download a new game on his tablet, and the meltdown started. He was laying on the ground, kicking and screaming. Our new neighbors below us started banging on the ceiling. I ignored that as we also have neighbors next to us that are very loud - people coming through all day long, loud conversations in the hallway, and music blasting. Carter continued on and was not bothered by the banging. As I have learned, in this type of situation, to simply reply with "no" and wait it out. I could put him in a child's control position, however, he was safe on the carpet and was not thrashing around hurting himself. After about 2 minutes, there was a knock at the door. Carter opened the door, and as the neighbor from below us did not enter our apartment, Carter propped the door open with some shoes. The lady then began to rant on how she is annoyed with all the stomping and this is unacceptable. I replied to her, "He has autism, he's having a meltdown.". She apparently did not care about that and kept on. I was not sure what to say. I was so upset that she was standing at my door screaming into our household, if I said much I would end up yelling right back at her. This continued on for 5 minutes. After that, I told the lady, "I don't care, you do what you gotta do." and slammed the door in her face. Yes, I did. As my parenting coach is through the county, due to legal reasons as Carter is her client, she was not able to respond to the neighbor. Family at Christmas: This was years ago, Carter was about 3 years old. My family is pretty big, we usually only get together for holidays, and do not keep in touch aside from social media. As holidays usually go, there is a spread of food along with desserts. Carter I am guessing was upset that he could not have a cookie, he did not say anything. Again, another meltdown. One family member told me he deserved a spanking. I am against striking a child, special needs or not. Another family member put Carter on his lap, and held onto him, telling him to stop. Carter did not stop. This went on for about 10 minutes. After that, I had enough. I brought Carter into another room, laid him on the floor, and monitored him so he would not hurt himself. I was crying and very upset. He did calm within 20 minutes, I left the Christmas party shortly after that. I have now made my family aware of Carter's autism, and they have changed their tune. I feel possibly some family members did not understand before what autism was, or believe his diagnosis was correct. As I have said before, at the time I was not always sure either. Techniques that help me now to address the matter at hand, without being rude: As I have stated above, I did not always (and sometimes still) lose my cool in these situations. After speaking with my parenting coach, she had some suggestions for me on how to handle these situations better. After much thought, taking the high road models good behavior for my kiddos. I plan to change my approach using the following strategies below: Stay Calm: Count to 10 in your head, think of a nice ocean or something similar, whatever you have to do within reason to keep yourself from losing it. Listen first: Listening to what the individual is saying is important, even if they do not say anything. Wait to speak until they have finished, and if they keep on and do not stop talking, I would suggest just walking away rather than yelling back or interrupting. Know what you want to say, and how to say it: Yep, I am serious. Rehearsing some generic responses at home can be beneficial. This way, when you do respond, you can be firm, but not rude either. For example, "I appreciate your concern, however, my son is having a meltdown and this is not a good time to discuss. Would you like to get some coffee later and revisit this conversation then?". If they reply no or just walk away, problem solved. If they accept your invite, follow through with it and listen first. Here is another example, "Ma'am (or Sir), this may be bothersome, however, my son (or daughter) needs to regulate their body and this is just what he (or she) does. He (or she) has autism and his (or her) brain functions differently.". As I have said in one of my stories above, some of the elderly may not understand.  Do what you need to do: Whether someone is laughing, poking fun, or just plain saying rude remarks, do what you need to do for your child. If your child needs some deep pressure, apply deep pressure. If your kiddo needs to be moved to a quiet space, bring them there. Sometimes this step comes before the others.  Don't get yourself down afterward: It's not the end of the world when these confrontations occur; you can still continue your grocery shopping or family outing. Yes, there have been times I have cried afterward, even in the car driving home. However, autism does not just disappear. Just because someone else is not aware or even if they are, and are just being a jerk the whole time, that's on them, not you. There is a big difference between bad parenting and working through a meltdown; some people may not see it that way. Process with your child, if possible: After the whole ordeal, maybe even in the car or at home, process the situation with your child (if you can). Ask the 'wh' questions, see if you can find the trigger from that situation. If your kiddo asks questions about the person, keep in mind, modeling behavior is important. Simply stating, "That person does not understand how different and special you are, that is why I had a conversation with that person.". There is a lot of critical thinking and problem solving with processing; it can be difficult to work through these things, once you do, remember what the trigger was, and see if you can avoid it next time. Utilize a support system: Venting to a friend or your SO may help get those angry feelings and thoughts out of your head. They may also have some ideas on more things you could say, or how to help you feel better. Going through this alone can be very saddening, having someone there to help you through is so beneficial. But wait, didn't you say you are not always 'calm' during these situations? Yes, it happens. And it may also happen to you. I created this post to give some strategies of how to get through the remarks and judging thoughts some people in society may have. As I have said above, I am not perfect. Any knowledge I have that I can provide to others, I will do what I can to help. What's going on with us this week? As the school year is coming to a close, I have the IEP's scheduled for the kiddos. Maddex also has one, due to speech. It's been a rough week as Andy has been working for a week straight 12 hours a day 😭 We haven't had much time together and I hate seeing him so tired. Luckily, today he has off. This has thrown off the kid's routine which just makes everything harder, especially mornings. The warm weather also has the kids all ramped up. I am happy to say, no poop this week! (Let me knock on my wooden desk quick) I am doing well with my new cleaning schedule and weekly routine. **Minecraft had a new update so we are all playing around with that more than usual. The kiddos right now are playing with toys watching **YouTube. Also, this morning, I found the bunch of bananas on top of our kitchen cabinets. Carter admitted he did this, I did find it laughable that he actually pulled a prank on me, but we still discussed why that is not acceptable. That pretty much sums up my week! My closing thoughts In today's society, autism awareness is growing, however, some people still do not know what it's about. There will always be people watching, judging, or some that just do not understand. Handling these situations can be difficult. I hope my strategies I have listed above help those of you with autistic kiddos. Have a great day ☺ **Disclosure: Reviews of products & referenced links are not sponsored by any affiliates and are solely the opinion of the Author; these are strictly opinions and honest advice, which should not be considered consumer or health guidelines. The Autism Soup and/or The Author are not responsible for any injuries or damage due to procedures listed above. Please consult with your doctor in regards to health concerns.

The First Diagnosis: Carter's Story

The story of Carter's autism - the beginning and now: Please refer all ** marks to Disclosure statement at the bottom of my post, also feel free to visit my Disclosure Page page on the bar on the right hand side of my blog. Links may be included in this post. Summary: This post is the story of how Carter was diagnosed with autism, all the trial and error to get where we are now, and how far we have came. This post is special to me and I hope you enjoy reading it as much as I enjoyed writing it 😃 To skip to the autism related topic: this is usually where I include the heading for the autism coaching subject included in my post; however, as this post is centered around Carter's autism, the whole post pertains to autism. The diagnosis Carter was diagnosed with autism at 2 1/2 years old; that is very early for a diagnosis, and as time went on I was not sure in the first couple years if that was accurate. A few years down the road, I realized this diagnosis was correct, hand flapping and all. At the time, I was working with a parenting coach as Carter's behaviors had spiraled out of control and I had a hard time understanding why. The daycare could not handle his behaviors, and my mother took on the role of his babysitter while I was at work.  This was while I was pregnant with my second kiddo, Maddex. Shortly after the baby was born, I was very overwhelmed; Carter acted hyper all the time, running around yelling in gibberish-type language and I had a hard time grasping what he was trying to say. This then lead to the meltdowns and destructive behaviors I am sure most of you autism parents are aware of. Going to the grocery store or running errands became such a power struggle I could not bring Carter with me. My mother again watched him while I was out and about getting what I needed to done. Thank you mom for all you have done to help me through this, from the babysitting, to the meltdowns, and all in between. I could not be more grateful to have your support and love throughout this journey. I am truly blessed. There is a local agency in town for autism diagnosis and in-home therapy for children on the spectrum. The parenting coach I worked with recommended I bring Carter in for an assessment. This assessment was three hours long, and afterwards, both of us were completely exhausted. A few weeks later I received a packet in the mail with the diagnosis: Autism:PDD-NOS. Here is the definition from **Google: "A pervasive developmental disorder not otherwise specified (PDD-NOS) is one of the four autism spectrum disorders (ASD) and also one of the five disorders classified as a pervasive developmental disorder (PDD). ... Even though PDD-NOS is considered milder than typical autism, this is not always true." Source: here. I have included the source of this definition as this is directly quoted from the site and is not my work, just to be clear.  After reading through the whole packet, the scores for each section, I cried. I cried for a good while, thinking to myself, "How do I even handle this? He is my first child, what is normal? How can I tell the difference between a meltdown and just a child disobeying his mother? What do I do now?". I felt lost, unsure how this would all play out in a few years when he would start school. "Would this ever change? Is it going to get better?" I thought to myself. And, that it did, in time.  Therapy, IEP's, and medications The autism agency that assessed and diagnosed Carter was able to provide in-home ABA therapy for him from 2 1/2 to 5 years old. Carter attended preschool without any issues, I was lucky his teacher could accommodate to his needs without an IEP. I also had him enrolled in an in-home speech program. This greatly helped with his communication. I was not a fan of this ABA therapy, once Carter turned 5 years old, I cancelled the sessions all together. At this time, the speech therapy also ended, as it was a program for only certain age groups which he had outgrown. After preschool, as I had moved to a different area of town, he needed to attend a different school. This is when the first IEP came about.  All day Kindergarten was a far stretch from a few hours of the preschool environment; this was also a special education class of only six kiddos. He needed a cold lunch packed as he did not take well to the menu the school had for the kiddos. His food aversions became so bad, he ate only a few foods, and that didn't change for a few years. Every day I packed him a peanut butter sandwich and juice box. I also sent along two changes of clothes as he was still in pull-ups at this time. I would drop him off to school every morning, as he really enjoyed the alone time with me, and it helped his day to start off better. He did take the bus home, which never went well. As part of his IEP, a harness was used to keep him safe. He often became disruptive on the ride home. Frequently the school called and stated I needed to pick Carter up as his behaviors disrupted the entire class, or he would not get on the bus. I was angry, sad, and frustrated.  Something needed to be done. Even with an IEP the school struggled with his behaviors. They brought in a speech therapist, OT, and a special education teacher's aide. Even with that, the behaviors were not improving. All this support at school and nothing changed. Finally, after a few conversations with family members, I called the doctor. Upon meeting with the family physician, I described all of Carter's behaviors, listed off the triggers I could identify at that time, and struggles with school. Carter was with me for the appointment. The doctor referred us to a psychiatrist for medication management. I was reluctant to attend this appointment, as I was strongly against any prescribed medications for my son.  As we entered the psychiatrist's office, I was nervous. This was against my beliefs, however, with all that was going on, I was willing to try a new approach to get the behaviors under control. Carter currently is still seeing the same psychiatrist, two years later. He takes two medications, one in the morning, the other three times a day. I also occasionally give him melatonin (for sleep) which is approved by his doctor. The behaviors lessened, Carter became more regulated. There were still meltdowns, however they were not as intense.  The school (in my opinion) was pretty horrible, and I did not feel comfortable with even the secretary. It seemed to be all the staff were a bit off. We moved to a different area our in town and I was able to open enroll him to the school he was currently attending. I did the best I could during the IEP meetings during the school year to express my concerns, to address the issues at hand going on at school, and to communicate how I felt I could help. Even with all of that, nothing improved; I was still called to pick Carter up from school, I received incident reports in his backpack almost every day, and one week I kept him home to give him a break. I cannot get into the exact details, I just feel the school did not have the support systems in place to accommodate to Carter's needs. Once summer break came around again, I was so happy - I planned to send him to a different school (again, and I hoped this would be the last time) and did some research on the schools within our school district. This was a different school district than where we lived before, so I had high hopes. During the summer, I reached out to a county worker (social worker) for some help with resources. She was able to connect me with a program that focused on social therapy, versus ABA. Once I met with the director, I was excited to start these sessions for Carter. We are still utilizing this program today, and the majority of my autism knowledge came from this program. At this time, I cannot include the name of the program, I am hoping during Carter's next session to see if I can get some information on the program to post here. If I am able to do that, I will include a page with their information. Once the school year started, the IEP team determined a full day of First Grade was too long for Carter. Part of his day he spent at an ABA therapy center along with the rest of his day in school. This worked out great for a while, then after the honeymoon stage, we had a few challenges. As the school year went on, it seemed the ABA therapy center was not enough. Luckily, there is an alternative school for children with behaviors, both special needs and mainstream. The team agreed upon Carter switching from the center to the alternative school for part of his day. We are still on this schedule, and it will continue next school year. How is Carter doing now? Carter is now 7 and finishing up his First Grade year of school. We have a good plan set in place, I am happy with his IEP team, and the supports I now have which have stemmed off this social therapy program. Carter is able to run errands with me for up to four hours, he likes to go to the grocery store and put items in the cart, and he LOVES going to the gym daycare. 4 1/2 years later, and we are finally in a good place. I would like to thank all involved in Carter's therapy, past and present, and I am so grateful for all of you. I have learned so much, and so has Carter. As I say often in my posts, patience is key. I waited years for a regulated, calm child. I still see meltdowns here and there, sometimes still receive incident reports from school, but all in all it is far from what it used to be.  My closing thoughts Autism is not something people outgrow, you just learn how to modify everything from basic hygiene to attending college or keeping a job based on your kiddo's needs. I have high hopes for Carter. He wants to go to college and create lab-made diamonds. I am so proud of him for his determination, bravery, and humor after all we have been through. He knows when he has meltdowns, is learning to self-regulate, and we are now processing after a meltdown to address the trigger and find a way to modify the situation or change behavior for next time. He is currently asleep on the couch (five minutes before bedtime) while he was watching **Minecraft videos. I understand now the autism will always change as he grows, and it will not just disappear. Carter may need to live with us all his life, or he may be able to move out and get an apartment at 18. Who knows? For all you autism parents out there, I encourage you to have hope, be patient, and do not be afraid to reach out for help. If I did not reach out to that county worker, I would not have the great support system I do now for Carter. I really hope you enjoyed reading my story of Carter's diagnosis, it brought back a lot of memories, good and bad. Thank you for reading, enjoy your day all 💙 **Disclosure: Reviews of products & referenced links are not sponsored by any affiliates and are solely the opinion of the Author; these are strictly opinions and honest advice, which should not be considered consumer or health guidelines. The Autism Soup and/or The Author are not responsible for any injuries or damage due to procedures listed above. Please consult with your doctor in regards to health concerns.