Well it’s been a few weeks now since my last post here and boy have things changed,
We are in a new, much much smaller apartment that is not just a lower but basement level. This means that the window jumping is obviously not an issue anymore. But with the move came other problems. A significant and alarming increase in her bolting. From home, and once from school.
Let me back up a little. With the apartment move, we moved into a different middle school boundary area. Which, meant that in order for her to continue riding the school bus 🚌 she had to transfer to the new school. The school she was at before was far from ideal n the school yr thus far had not been supportive or good for her by any stretch of the imagination. My concern though, was two huge changes so quickly. But, the new school seemed to possibly be a better fit for her so I transferred her, met with the team, things looked good. Day one went fantastic, day two a little bumpy but not horrible, day three? Omg.. a series of mistakes and triggers sent Jordan into a spiral that led to her bolting out of the building and off running 🏃 into a neighborhood she was not familiar with. Police looked for her for almost 2 hours before she was finally found and brought home. She was ok but we were both pretty shaken up. It was definitely an eye opener for everyone including the new school. Which, after us meeting again a couple days ago, now the principal is personally invested in making sure something like that NEVER happens again.
The last couple days have been much much better. Jordan’s adjusting to the new place, new school, new friends, teachers.. all the new..
So for the moment I can breathe.. a little.. but she has taken off from home too. Right out the door. Now that we are lower and I can’t lock the door securely from the inside (metal door) like I had done before(wooden door) . So I am looking into my safety options there and what could work for these situations.
This apartment is in no way sustainable long term. Affordable? Yes. Safer? Sure. But it’s a tiny one bedroom and still in kenosha/Wisconsin and she still has no services or support outside of school. So the plan to relocate to Florida is still a top priority. And soon.
In case you missed the last post, there’s a number of ways you can help! Teechip Is the newest store setup which has shirts, coffee mugs, and even phone cases with a one of kind design! Teespring Has another similar design (also unique to us) with various tee shirts and stickers! If you would like to donate a smaller amount without the bonus of a shirt etc you can do that at Youcaring. Now, if you want even more for your money, and really want to continue to help us out and help me continue to fight for not just Jordan’s safety and well being here but our big relocation you can pledge a monthly amount (your choice of how much) at Patreon and your pledge there will get you super special, patron only access and behind the scenes updates directly from us. As always please follow us here, and on Facebook!
Above all else, whether you can help financially or not, please like, share, Tweet, Pin, repost, and share the word. The sooner we reach our goal, and can get this little girl to Florida and to a safer, much more supportive environment the better her life will be! And THAT’S my goal here!
After my last post there was no magic wand that made everything ok.
As a matter of fact the next day was just as bad, n in some ways worse. She didn’t go missing this time but the police were out, my house was trashed, caseworker and crisis were out for almost 2 hrs. After 3 days in a row of this (first wasn’t THIS bad, but caseworker had to come get jordan to school so still not ideal) I was exhausted in every way. 3 days of this coming rt after 2 weeks of winter break and 3 months of being on a roller coaster, I was depleted.
Luckily, on this 3rd day we tried something different. Jordan has a great relationship with her school’s police liaison who happens to be a long time family friend so he has years experience with Jordan and is one of few has genuinely gained her respect as an authority figure. So, since there was an officer here and she wasn’t hearing anything he was saying, this officer reached out to him. Worth a try right? He called me and I put him on speaker. Jordan was reluctant to talk to him at first (because all feelings aside, she knew she was wrong for refusing to go to school and her behaviors) but he assured her he wasn’t mad, he n her teachers, n friends were all worried about her and really wanted to see her. That made her relax a bit and they talked for a few mins. Somehow it went to what this officer was eating for lunch haha. He got the idea to tell Jordan he was REALLY thirsty and she would be doing him a huge favor if she brought him a soda 😂😁.
Funny enough, it worked. She was then determined to get ready as fast as she could to get to school and get this man his soda. Whatever works right? Well it did. I took a cpl hrs to breathe, n put my house back together and relax as best I could.
That afternoon we had her annual IEP already scheduled. Initially I was going to reschedule. I was far from being in a mindset to think about that and focus. I was very happy she again made it to school but mentally I was spent. The thing was we didn’t have any wiggle room with the due date, n if I hadn’t gone they would have done it without me n sent me a copy. Absolutely not. From experience, that was a big nope. So I pulled up my big girl pants and went.
I wasn’t the most talkative, obviously as much of it was routine n continuing what they had been doing, changing a few things, pretty cut n dry. Once that fun stuff was over, the school day was over n Jordan came in. So we took advantage of us all being in the same room and wanted to get to the bottom of her reasons for refusing to go to school every day. It took awhile to weed through the stuff in her head and get her to understand that her perceptions of things were much worse than reality and once she saw that she relaxed. Her teachers are going to be working with her on some additional coping skills, some reward charts for coming to school, etc to hopefully keep her motivated to continue.
Not sure what exactly clicked or if it was a combination of things but Friday and today she got up, got herself ready, without much of an issue. Over the weekend she was pretty relaxed playing with her dolls, which helped us both. We both needed that time to whoossahh…
So here we are, starting a new week, staying hopeful about going forward. Hoping and praying for the storm to have passed and today is a good day. 😁
Well 2017 has not started off any better than 2016. Winter break ended & school began yesterday. Good thing right? Yeah.. not that easy in this Autism home.
Jordan refused to go to school yesterday, Intentionally missing her school bus. Her caseworker eventually was able to come get her and after an hr got her to go to school.
Last night was better so was hopeful today would be better..Almost made it.. until 5 mins before the bus came Jordan flipped the script and suddenly refused, again.. again missing her bus. Again, her caseworker came but even she could not convince Jordan to go. She left in hopes that Jordan would relax and go on her own.
It’s below 0 so not ideal, but she had chosen to pass up not 1, but TWO opportunities to get a ride. After awhile she did calm down.. and was actually in a good mood. Got her stuff on, all bundled up and started walking..
Her caseworker was still nearby (just in case) so she watched her from a distance walk most of the way. I think Jordan spotted her. Since she had made it most of the way n seemed to be doing better, she pulled off n left the immediate area.. (I didn’t know that at the time)
About 20 min later (if that) Jordan knocks on the door. Yup, she had turned around n walked all the way back home. Again refused to go back to school. 😕I was not giving in, she was looking for attention, trying her best to get out of school. I stayed consistent and again, convinced her to go.
Again she got bundled up. I heard her go downstairs and the bottom door close. She was in a better mood, had warmed up a bit and said “bye mom see ya later!” So I sat down and gave her time to get to school..About 30 min later, to make sure, I called the school. Asked if Jordan had yet signed in (a must when tardy n by this time she was 2 hrs late). My world stopped when I heard
“No, we haven’t seen her and she hasn’t signed in”
I called her caseworker who immediately went looking for her. I went downstairs, looked in the basement, turned on lights, called her name, said Jordan please if you’re down here say something.. nothing.. not a sound.. I walked around outside, checked everywhere.. she was nowhere to be found.. I texted her caseworker that I was reporting her missing and going looking myself… heart pounding, while trying to remain calm (as possible).
I called 911, explained the situation, described what she was wearing, her route (she won’t deviate from it under any circumstances), etc. They notified the school, n had the school police liaison make a sweep of the school himself (he knows her personally so would recognize her right away n she would respond to him). Nothing..
Every minute felt like an eternity.. every second felt like my heart was beating faster n faster.. Units immediately began searching, Busy streets, side streets, alleys, porches, everywhere.. I was searching.. nothing..
One officer picked me up and brought me home, he looked himself, around here, in the basement, called her name.. nothing.. He told me to stay here in case she comes back home.. my mind is racing.. I get on the phone with my friend amy, she lives nearby. She hadn’t seen her but would pay attn if Jordan showed up there.. we are talking..
An hour has gone by now since she left n should have been on her way to school.. An hr that felt like a day.. I hear a thud in the stairway.. nothing after.. My phone rings, the officer asks her height n weight, n asks if I have a recent pic. Luckily I had printed an 8×10 copy of her Christmas pic and had laminated it.
She’s fine, n doesn’t have a clue what had been going on the last hour. I get her inside, call the police back let her know she’s home n safe, call her caseworker, the officer comes back…Again she has zero cares, even when we tell her she scared everyone and a lot of people we’re looking for her and were worried. Her caseworker offered to give her a ride to school..(She cannot think she can pull stunts like this n get out of school, it will only make her do it again)
Nope, the officer tried to “convince ” her to go to school.. nope.. so they both left.. they have jobs to do n Jordan was home safe.. so again.. I am on my own and refused to back down. She is strong willed but so am I. Again, after a little while she got bundled up to go to school. Except this time, she was going with an escort. No way I was doing that again.. she’s fussing all the way there.. but we get almooossttt there.. n she falls out.. again refused to go.
This had been going on since 7am n it was now 12:30? AND it’s FREEZING out.. no honey.. I got her butt up n she got in the school. Once inside, I went straight to the principal office n let her know.. look.. this child is under the impression that she makes the decisions when she comes to school and when she don’t.
This morning was horrible but it cannot happen again. She needs to understand that school is not optional and she cannot pick n choose when she feels like coming..
So, when I left Jordan was in the principal office with her n the school social worker.. And I’m taking the cpl hrs she is there to breathe.. No clue what tonight will bring..Or the morning..Tomorrow afternoon we have her annual IEP.. fantastic..
oh n I’m sick 😷.. which makes everything better! 😫
As 2016 comes to an end I have to reflect on what this year has brought us. Started off after just ending ties with Jordan’s old Aba provider, a major regression following it from changing her routine, losing friends and ppl she had become close to over the yr prior.
Then, we started with her current provider, she has a 1:1 BCBA (very rare with kids in Aba so we are very thankful!) and it was a rough start while Jordan adjusted.
Then, somewhere along the process, things at school went horribly wrong, once again sending Jordan into a downward spiral that led to her climbing out her window and off the roof. (Only injuring her back but she was ok Thank God). This was a bit of a lockdown, wake up call and things had to change. And they did.
Jordan’s older sister turned 18, moved out, got her CNA license, Graduated High school, got married (and Jordan n I were excluded from which caused a million more issues for Jordan) and moved out of state with her husband. All within less than 2 months span and Jordan had a very rough summer after adjusting to the new normal, being the only child here, etc. Learning to accept the wedding and moving past the hurt it caused. This was not easy but she did it and her and Jennifer now talk via video chat on messenger which does help her with missing her sister. She is anxious to see her again and I think they will have a better relationship now, since they are not together 24/7/365.
Jordan had activities during the summer, art camp, a trip to Wisconsin Dells, and some family outings that was able to enjoy.
Then school started and she started Middle school. This made her miss her sister greatly because she wanted to share this milestone with her and have that sister shoulder when she was nervous. 😕 She made it, and it’s been rocky.
Some good days, some bad, some worse than others, but she is doing well overall.
Then I went back to working. That was a huge change for her and she didn’t take it well. School was having more problems, she was having a very hard time adjusting.
And.. because of our fabulous luck.. while out trick or treating she trips and falls. Causing a severe strain to her ankle. Landing her in a brace and crutches for over a week. No walking or weight on it whatsoever. For an autistic child it was basically hell. She was very lucky it began to heal very quickly and she was able to start walking on it after the week was over. She still says it’s sore on occasion but with this kind of strain, that’s to be expected.
Then, like this yr hadn’t been rough enough a tree fell on our house. Literally days after hurting her ankle mind you. Destroying the roof outside of her window, n damaging the front porch. It hit within inches of where she was laying down in her bed and absolutely terrified her. She was ok, physically.
Then, as our luck would have it, literally the next day (not even kidding) she gets sick. N has been since. Once landing her in an ambulance to the ER. She had been coughing so much, her asthma was flaring up big time n she was having trouble breathing. After a dbl med breathing treatment n a high dose of prednisone she came home. And was on the prednisone for a while after.
Her breathing improved but the cough lingered. This caused a lot of issues because it meant she wasn’t feeling the greatest but still had to go to school as to not fall behind.
Then her birthday, n the holidays had her excited but with autism along side that is anxiety and massive stress. We managed the best we could to make it as pleasant and easy as possible.
As luck would have it, couldn’t end the year without one more jab, I fell at work hurting my back. But being stubborn I continued working, everyday for the next week. 8 days straight before my back locked up (seized as the dr said) n I was barely able to move. I left work n went straight to the Er. N was ordered off work and off my feet. I took a few days off and tried going back, but my back was just not cooperating. So I left the job, going back to staying at home with Jordan for the time being, spent Christmas with her, n her winter break with just the two of us. We both needed it for so many reasons after such a CRAZY year!!
Tonight, Jordan’s beyond happy because she has had her long time bff over since Thursday night and they have been playing and hanging out ever since. She is here until Monday and these two I think, even though a lot of time spent on Minecraft, have been having so much fun.
As her mom, that’s the BEST way to end a bad yr. With these girls and knowing that even though 2016 tried it’s best to break us, we are still here and happy.
Bring it 2017!!!
Typically, a shutdown will mean any number of things, or a combination of things for different people on the spectrum. Any google search of this term will bring you many different opinions and perspectives on it. This is my experience with Jordan and how we (I) handle her shutdowns. The technical definition is a particular sequence of behavior in a child diagnosed as high-functioning within the autistic spectrum.
Jordan has a couple types of shutdown, the most common is the quiet, withdrawal shutdown. This means from withdrawals from everyone, even me. She won’t want any friends, or anyone around her while she recharges. I call this her quiet shutdown.
Second type comes if the shutdown is a result of an unusual amount or stress, routine changes, environmental changes (could be home, school, therapy, etc), or she is sick and feeling really bad, you get the negative shutdown. Which instead of going to quiet n peace to recharge, she lashes out, acts out, and puts herself in very dangerous situations. For example, earlier this year there was a lot of stress, changes, and we had the instance (discussed in a previous post) where she climbed out her bedroom window, out onto the roof, and jumped off. This is not a common occurrence but can n does happen (the shutdown/ acting out not roof). I call these her Negative shutdowns.
For the quiet withdrawal shutdown a few things tend to happen, and these are much more common than the negative ones currently thank you Jesus. These have a couple types of their own, quiet but verbal or nonverbal.
1) Most common is at the end of the day, she has been around people all day at school, around an extreme amount of sensory input, struggling to get work done, while focusing on not drawing attention to her stims etc. Sometimes after school she has Aba therapy for a few hrs. And by the time that’s done.. so is she.. she will regress into her room, to her bed, lights off usually, maybe watch a little tv but most likely a bit of minecraft until it’s time for bed. This is also her decompressing which is also often done on the weekend, firing school breaks, holidays when there isn’t school or major activities since we pretty much keep to ourselves. On my part, when she shuts down or needs to decompress, I cut back on as much unnecessary input as possible. Blinds n curtains closed, tvs off besides if she or I are watching something, I use headphones if I am on the phone or iPad etc. Her room the curtains are closed, lights off, and she can choose whether she wants to watch tv, lay down and relax, play on her iPad.. up to her. As I’ve said in other posts, I’d love to be able to do more, get out more, have people over, but as as Autism parent, it’s not about me. And in order for my child to do as well as she has been lately, giving her as much downtime as she needs, when she needs it, does more prevention than a lifetime of anything else. Moving on..
2) Now, if it’s a more extreme quiet shutdown, her brain is on too much of an overload she will “go nonverbal” for a period of time. She will not use her words at all, instead using one of a few AAC apps on her iPad. Myself and her therapist let her do this because we understand that
1) it’s temporary,
2) the reason behind it
3) her brain n processing need a break and this is her way of resting.
If we pushed her and insisted on her using her voice all the time, no matter what, instead of her taking that break and recouping she would have massive meltdowns and the recovery time would be significantly longer and more difficult. Now if she stays talking, but is shitting down, and say still has therapy we encourage her to finish but they have a more relaxed session. Everything is toned down a bit, less lights on, easier on her sensory wise n processing wise as well.
Finally, is the more extreme, less frequent negative shutdowns. Can also be referred to as EPIC meltdowns but the cause behind them is usually more relevant to an extreme shutdown and her reaction to it. During these times everyone really must tread lightly and carefully. Because the littlest most unnoticeable things will send her into a melt and take forever to get her to calm down. Causes of these periods, episodes, whatever you want to call them are more of less described earlier in this post but basically too much stress n change in a short amount of time is like lighting a stick of dynamite and daring it not to blow. Life is unpredictable and we try to teach her that n better coping skills when stuff changes but as we all know with Autism, change is never easy, period.
So how do I handle these times? 1) try to stabilize what I can, where I can as much as I can. Start small with daily basic routines, and work up. That is usually a great first step with Jordan. I can’t fix everything but giving her a sense of predictability always tends to help to some degree. 2) Let her have some control in choices where I can. This can be what to watch on tv, what to eat for dinner, etc. stuff that isn’t going to cause the world to end. It gives Jordan a bit of confidence that she has “some” control” when things are crazy and hectic. Is it perfect? No. And autism is as unpredictable as the weather but when these shutdowns happen, these are the first step I have learned to use and work from there to regain some peace for her, and us as a family. ❤️ The one other thing, that I have mentioned briefly before is using her Weighted blanket. If she’s extremely upset and can calm herself and is just out of control, I will redirect her (takes time) to lay down with her blanket. I have her cover herself from the shoulder down so it completely covers her except her head obviously. The overall weight, even weight, really seems to do wonders for physically relaxing her mind n body when she can’t herself.
Hope this answers some questions about shutdowns! See you guys soon! 👋🏼🌟
Yesterday I wrote the raw n real life life High Functioning Autism and it’s not easy, or rainbow n unicorn magic. That is all very true. Some days it is exhausting, heart breaking, spirit crushingly difficult. I never deny that and in my own experience with Jordan it’s been a very long 10 yr long journey (so far) to get to where we are today. She’s only been “officially ” diagnosed about 3 years but the story goes waaaaaayyyy back. The fight started when she was 18 months so I can say this life has definitely changed my life, my outlook on life, the way I look at many things in the world. That’s why I felt this needed to be written.
You see, I can be mad as hell at the system for missing her Autism for 8 yrs, or the NUMEROUS doctors, therapists, caseworkers , teachers, list goes on for either ignoring the red flags, or shrugging them off because “she’s social she can’t be Autistic “. 😡😡😡
I can be furious with Autism for making it difficult for her everyday to do the simplest things, to make friends, to keep friends, to go do fun things that kids her age do, to go be an independent tween causing mischief and trouble. I would love nothing more than to take away those struggles from her, don’t get me wrong. But, that doesn’t mean I want to change who she is. That is the key here. She isn’t sick with Autism, it isn’t some god awful disease. It’s a part of who she is. It makes things a bit harder yes, but there are so many positives it has given her as well. When people n organizations say they want to “fix” or cure” Autism I want to give them a serious punch in the throat because they just don’t get it. Take a step back and look at not just the negative things Autism does to our lives, ur kids, etc. But seriously look at the positive as well.
For example, Jordan’s creativity is so amazing n unique, its thinking out of the typical box as some say. She isn’t held back by society rules or concepts. When she imagines something it’s on a scale only she can fully appreciate. Also, she appreciates details. I mean the littles more precious things that our busy little brains don’t think twice about. I have learned from her to slow down, look around, pay attention. It’s amazing how much more you will see n notice when you just stop for a minute. Next, she does everything whole hearted. When she starts something, no matter how big or how small, very important or relatively not, she puts everything she has into it and you know that she has taken the time and effort to do her absolute best. That’s something many people I’m sure can use some work on themselves and she does it effortlessly and naturally.
She is absolutely the most stubborn child but I can see her using that to get what she wants in life as an adult. She has perseverance and determination of a bull and that is a great trait to have growing up. As a child it’s annoying lol but I am working on redirecting that energy to things she can put to use and when she does it, it’s awesome.
So here are two things I hope people take away from this post. 1) yes Autism can be very hard, n make a lot of things much more difficult BUT not impossible. There are always options, n possibilities, never give up, never stop trying, never lose hope. Ever. Also, look at the positive things like I discussed here, maybe your child is different but I promise you that if you take 5 min and really look and think.. you can see some positive things too. Focus on that. 2) Acceptance is crucial. You can’t ignore, deny, brush off, fix, cure, or therapy away Autism. It’s a part of who our kids are. It was when they were born, it is now, and will be when they are adults out in the world. If you constantly say Autism is horrible and needs to be fixed, what message are you giving them? That they are broken? Aren’t good enough? Need to be fixed? What does that do to their self worth, their confidence.. how much does a person with no self confidence accomplish? Then you blame Autism for holding them back.. see how that works? Accept it, work with it, help them learn how to do everything we do naturally. Give them the steps n tools they need to succeed and you will be successful as a parent. Including them in what you do, take them places, let them experience the world beyond the walls of your home, the sights, the smells, the people. Teach them how to be in the community, n be safe, n be comfortable. It is THEN they will grow even more and become more independent as they get older. Be comfortable in the real world where things are loud and unpredictable. Don’t keep your child in a bubble and hope they will be ok. They won’t. Real facts here. If you don’t teach them these things, who will? It takes time, n patience and a lot of work. But the payoff.. is priceless.
Many people have many misconceptions about what life is truly like for a child/ Adult/ or parent either with High Functioning Autism. The most common thing I get is “At least she can talk”. Ok yes, she can. And I am very thankful for that, everyday. But there is so much more than verbalizing in the everyday world.
Just because a child/ person is high functioning does not mean they don’t need support n help. Too many parents, teachers, people in general do the “oh they can talk their fine” and kids go for years without any type of help as to learning how to do everyday tasks neurologically typical people take for granted everyday. If you take one thing away from today’s post, please don’t shrug off ANYONE with Autism regardless of where on the spectrum they are.
Now I really want to make this as clear as possible so for this his post I will use Jordan as my primary example because she is 11 (almost 12 soon) and we have been through hell n back more than once so I can speak from first hand experience. Jordan is a bright, overall pretty happy, creative, great self advocate, self aware, young woman. I am extremely impressed and proud of how much progress she has made in the last few months alone, as well as over her short lifetime so far.
You see, Jordan wasn’t always verbal, n happy, n confident. As a matter of fact she didn’t speak at all until almost 3. And that was after 18 months of intense in home therapy. I won’t go into the details of her story because you can read that in the post of its own. But my point was this. Just because a child can speak when they are older, don’t assume it was always that way. Many kids don’t speak at all when they are young and with a lot of work and determination from the child, parents, support therapists, some (not all obviously) do learn to talk and build their language skills. It isn’t done by magic or by hopes n prayers. It takes a lot of hard work, and patience.
It’s not just about being verbal either. It’s much more than that, things those not directly involved in this life likely have no clue about n take for granted every single day. Basic life skills for one. Simple to some, take months and years of practice to learn. Things like tying shoes, crossing the street, basic hygiene, etc. Things neurotypical kids learn fairly easily and at a young age depending on the skill. That’s just ONE. And why are these things difficult? Numerous reasons. 1) sensory processing issues, 2) executive functioning delays or issues, 3) learning disabilities that make learning thing take more work n longer to accomplish. Just to name a few.
Then, let’s talk about Sensory processing disorder which most kids/ people on the spectrum have some level of difficulty with. Google “Sensory processing disorder” to learn more specifically about this. Everyone is different in this area, some seek a lot of sensory input, some avoid it, some like Jordan do some of both depending on the situation and input her body needs at the time. This is not something that can be learned in a book, reading and researching does help though. But, because every person is different and has their own needs this takes a lot of time on the parents part to learn what their child needs, what sets them off, etc. Then accommodating those needs in my opinion is always in everyone’s best interest as much as reasonably possible. Sensory stuff is not cheap, therefore I have learned to look for what exactly Jordan is looking for input wise and find less expensive ways to accommodate them. I can tell you first hand, once I did that, n made my home sensory friendly for her.. there was a huge difference. You can message me on our facebook page if you have questions or ask your OT, therapist for recommendations for your child’s needs.
Now, what about social skills.. This is a HUGE issue for not just people on the spectrum but High Functioning people because they are often misunderstood as being rude, Impolite, shy, quiet, etc.. So understanding the lack of natural learning of social skills is crucial to our kids so they can be more independent and successful as adults. I wish I can say the world will always accommodate and understand our kids, but when the kid is High functioning and doing well in school for example, more likely than not they get ignored and stereotyped leading to even more withdrawal. We don’t want that. I am far from a perfect parent and not a professional here. But, I can say I work with Jordan every single day, 365 days a yr, alongside her therapist, people at school, and friends to build up her social skills. So that, when she is older, if she chooses to get a job, be on her own, she can with confidence do that and be not just ok. She will be successful and happy.
What do I mean by social skills? It’s a broad term that is used a lot in autism communities. And again, specific skills will vary from one child to the next. So for Jordan, 3 yrs ago when she was finally diagnosed she had very little appropriate social skills. Constantly interrupting, no filter EVER, zero emotion control whatsoever, no patience, very little conversation skills (appropriate and staying on topic), no concept of stranger danger in public, no concept of maintaining appropriate friendships, no concept or boundaries at all. She was very demanding with not just myself and her sister but also other kids who played with her. She didn’t understand why everyone didn’t want to play dolls for hours on end, or minecraft. She still struggles here. I’m sure there’s more but that gives you a bit of an idea. She still struggles with some of these things, some she has gotten better, it it’s all a constant learning process that makes the simplest conversation sometimes very difficult. But we are working on it and will continue to work on it.
Then we have anxiety. Which is a huge issue for many people not on the spectrum, but when you are Autistic anxiety can be crippling. Jordan’s anxiety is severe and even with meds, even though they help, it is still a HUGE barrier many days. In fact, if she is too overwhelmed by her day, her surroundings, stressed out by whatever, mentally she will shut down. And what I call go nonverbal. I say that because she has to give her brain a break. That means that she will use a AAC app to communicate for a bit, and we will limit all sensory input around her as much as possible. If we need to respond or tell her something we do it will patience not pushing her n letting her process slowly and respond on her iPad. Would I prefer her to always use her voice? Of course. But, this isn’t about me n what I want. It’s about her. Anytime we have done this, it lasts at the longest a few hrs before she is relaxed, and feeling calmer. She always bounces back much better, happier, and confident which tells me that she’s in a better place than before she shutdown and THAT is the goal.
Obsessions, Meltdowns, end of the day decompression.. Last few things I will discuss. I didn’t know it at the time but Jordan’s well known obsession began when she was only a yr old. She got her first baby doll and that was history. Now, she has several “mini obsessions ” that come n go in phases. But dolls is one constant for 10 yrs. As she’s gotten older, it’s more than just a little girl liking dolls. She LOVES her dolls, many times will take them with her when she is out, they have names n stories. They are her babies. There’s another post here about her dolls so let’s move on shall we? Meltdowns. Jordan’s meltdowns are rarely anywhere near small in portion. Almost always if she reaches meltdown point it’s EPIC. They are not tantrums as some ppl mistakenly think either. Often set off by sensory overload, stress, anxiety. For her, the best thing for her melts is her weighted blanket. She doesn’t us it often because it’s very heavy but it works very well to relax her body when she is in meltdown. It took some work to get her to understand this but once it clicked, it has been great.
Now finally, end of the day/ week decompression. What does that mean? For our kids being social is exhausting! It literally drains them to sit, n listen, n remember all life’s social rules of what to do m what not to do, n focus on what the other person is saying, process it quickly and give an appropriate response. It’s seriously hard work and all while trying to fit in, not be obvious because we all know kids are jerks and are like sharks smelling blood in the water. Hard to hear but true. I am glad Jordan has learned to “blend in” n be a chameleon in some ways but, it also makes me sad. She doesn’t feel confident enough to be her own person, express herself as a unique individual. She just wants to be like everyone else while at school. Which like I said, has its advantages but still sad. Some kids are completely unaware of their own quirks and others reactions and I hope those kids don’t end up bullied but grow up to be confident unique adults. This is a big issue with any kid, any young person growing up true. But when you add in Autism, Being high functioning and very much aware of everything around you, seeing the stares and strange looks… it’s much more difficult than “typical kids growing up “. So the decompression comes into play after school, and on the weekends, during school breaks. When Jordan gets home, she spends a few minutes telling me all her school stuff then goes in her room in the dark, in the quiet and usually plays minecraft for a bit. Why? Because she has been working all day on what I just talked about and mentally she’s exhausted. Add in all the sensory overload all day (fluorescent lights, kids talking, lockers slamming, teachers talking, busy hallways, footsteps, etc). It’s a lot for someone who is very sensitive to all of the above. So a time out or “decompression ” where she comes home, doesn’t have to listen to anything, no lights, no unnecessary sensory input lets her brain n body take a break.
So With all that said, I hope that this helps someone somewhere see just how much kids/ people on the autism spectrum struggle with on a daily basis regardless if they are High Functioning or Low Functioning or somewhere in between. Many many ppl have grown up to be productive, successful, adults that’s true. But my job is my child. If she achieves those successes I will shout it from the mountaintops. In the meantime, it is my job to teach her HOW to get there, each and every day. Don’t rely on teachers, n therapists to do it all for you. YOU are the parent, they are getting paid to do ABC. Once your child ages out, or graduates from that school.. or are 18 and qualify for no help and are not ready to be independent of outside help, it will be 100% on you. So why not help them now? Right?
As always feel free to contact me on the Facebook page if you have any questions! Thanks for reading!
First, I want to say that it’s been about a week and Jordan has done an exceptional job transitioning, adjusting to a new environment, practically all new kids, and even making a few friends already.
With that said, and I’m not degrading how great she’s done, myself, her BCBA Aba therapist, her caseworker, and of course Jordan have been working for a very long time doing the prep work for this transition. This post will discuss some of those things that I feel have helped, and things we are continuing to do to support her being successful during this part of her educational career.
Before I start, I want to remind everyone of just how far Jordan has come in the last six months. This way, it is clear just how great it is to hear how well she is doing as of today. Just a few months ago Jordan was so stressed out, her anxiety was out of control, she was extremely overwhelmed with numerous things going on and a number of significant changes, she (as discussed in a previous blog post) during a meltdown climbed out onto my 2nd floor roof and jumped off. Luckily, only hurting her back which has since healed. Since then, meds have been adjusted, there have been MANY changes at home, and she now has Princess Chloe who is her ESA (Emotional Support Animal) and has really changed Jordan’s life. We have had our bumps but as I will discuss, we have put a few things into place that we believe have made the significant difference we are seeing now.
So, with that said, we started the discussion of what to expect in middle school back in 5th grade. Repeating it often, starting with a few general statements here n there, letting her process it a little at a time. Then, progressively adding a bit of detail, answering questions, showing pictures N videos from the new school. All done slowly over the last year. Anxiety is a beast and there were times it certainly won and everyone had to back off for a bit N let her relax n process. With Autism that is how life works, you can’t push push push push N expect them to smile the entire time. Just not the way it works. Once 5th grade was over, she felt a bit of relief since she had several less than kind classmates N teachers that practical ignored it. When she left grade school, in a big way that was one door closing that if she chose, she never had to go back. That helped A LOT.
Over the summer, we didn’t push too much but kept the conversation going anyway. As we talked about stuff, she relaxed knowing she knew what was coming. That’s another big thing with Jordan’s Autism and many kids(people) on the spectrum. Predictability, consistency, schedules, routines are KEY. Jordan really wanted a relaxed summer before middle school so for the most part that’s what we did. Now, there are things I wish we had done, or done differently but, it was a good summer regardless. Jordan gained confidence in the upcoming school yr slowly as we discussed it more N more.
Right before school started she did “Gear up” which is basically a 1 day, 3 Hr class at the school where kids get a sneak peek. Jordan wasn’t overly thrilled with it but it did give her a visual idea of what was coming. Then, a few days before school started, we attended the open house. This was where things really changed for Jordan. She didn’t want to go ( people, crowds, noises, new stuff, etc). But this time I told her to at least try. Let’s go check it out, see the classes, meet the teachers, etc. N she did. Once she started seeing everything N touching everything (her way of processing it), n hearing the plans for not only the yr but their plans of support for her, she relaxed. Once she relaxed, she was pretty much ok.
The first few days were hard for her with all the new kids, schedules being off, adjusting, etc but by the 3rd/ 4th day she had her combination lock down, her classes down (kinda), n needing very few reminders throughout the day of things like where to go, what she needs for her classes, etc. Her teachers are confident she will get better with those as well. She’s met a few kids she’s become friends with and her special Ed teacher has and will be continuing to encourage other classmates to engage with her, include her in things, etc.
As far as at home, she has a custom schedule where everything she needs to get done from the time she wakes up, till the time she goes to bed, is laid out. For every 5 things she gets done (without reminders or arguement) she gets 1 token. She earns 4 tokens (everything for the day) she gets one reward. Those rewards are simple things she asks for all the time, but are positive reinforcers. It has taken some time but she has really done well with this system.
The school has a similar reward system (school wide not custom) n looks forward to cashing in her “Lincoln loot”. So she is motivated to be good in school, n earn as much as she can there as well.
If anyone has any questions feel free to contact me through either Twitter @judithkenosha or Jordan’s facebook page HERE.
So we have had a lot of changes over the last few months! Let’s start where Jordan climbed out a window, n jumped off the roof 4 months ago. Right after that, the Windows all have locks, several have alarms, new crisis plan in place. Also, one of her meds were adjusted. It took a little bit of work but things started getting better. Jordan graduated 5th grade, finishing up her elementary school days.
Her older sister Jennifer soon after that turned 18, got her CNA certificate, moved out, graduated high school, married her Air Force fiancé, and eventually moved out of state with him. They are now starting their life as a married couple while he is active Air Force working everyday near their home.
I said there’s been a lot of change! Haha
With the changes from her sister moving out n away, her Dr and I decided that a kitten would be a good next step for her. Not just a kitten but an emotional support animal that would give Jordan the companionship she was missing from Jennifer moving out, help her relax, responsibility of taking care of a kitten of her own, n more. So, with that we brought Princess Chloe into our home n it hasn’t been easy (Chloe had some health issues at first) but she’s healthy, Jordan’s been awesome at taking care of her, n both are absolutely in love with each other and have lots of fun together!
Over the summer we have had some great outings, n fun, n a lot of relaxed downtime as well. It’s been a good chance for Jordan to take advantage of the downtime out of school, enjoy some extra time with her kitty, n we get to work on some specific skills N issues with her Aba therapist. We recently had a change in caseworkers as well. Her caseworker before was good, but it a job to her n it was obvious this line of work (social work, working with special needs kids) wasn’t her passion or something she was really invested in. This new worker though is quite the opposite N has been downright amazing. Jordan took to her pretty much right away and gets excited seeing her which is a huge plus. She is spunky n fights her for her clients which is a major plus with Jordan n the rest of her clients. I am so thankful we got assigned to her especially since we are about to begin the next step of Jordan’s educational career..