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Regression?

I wanna say Joel was 10 years old in the picture. So about 8 years ago. So little. So precious. So long ago. I miss this little booger.

So Joel seems to be reverting back to some problem behaviors and also picking some up.

He has been more aggressive. Back in his early teen years, Joel was violent with us. He hit, bit, threw chairs, and cursed. He has been calmer in the last few years. He hasn’t bitten anyone recently nor has he thrown chairs or something. But, just like anyone he does get mad gets loud with us and occasionally throw something at the wall. But my point is this: Is he regressing?

Although he’s not as violent as he used to be, his behavior seems to be going in that direction. I know that I’ve mentioned his twitching before. My sister and I are no experts but we think his twitching is a behavioral thing. He tends to do it when he is annoyed or sometimes it seems randomly. The twitching he does can seem scary to outsiders. I’ve been asked if he’s having a seizure, if he’s okay, what’s going on when he does it in public and it makes it worse when people stare. We’ve asked his doctor about it they dismissed it and said basically it is because of down syndrome. I’ve been wanting to get a second opinion but there’s only so much influence I have in that department.

Anyway, I guess he’s been doing that a lot more in school now and his teacher is very concerned about it. We’re used to it because he does it a lot and has been doing it for years. But it has become more frequent, so is this a sign of regression?

He does seem to have to become more aggressive. Again is this regression? Possibly. His behavior wasn’t 100% but it has become a little more like when he was in his younger teens. He is starting to throw things and yell more along with cursing. Although he isn’t really being violent to others like he used to, we’ve noticed that he’ll slap himself. Which is definitely not good either.

Also, another area of concern is Joel’s accidents. He has been pooping his pants and elsewhere way more frequently than he used. I actually recently wrote a blog post about it. It used to be like once every few months and now it is happening at least once a week. To me, this is more clearly a sign of regression but I’m no expert here.

Have any you dealt with regression? What to do, what to do…

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4 Comments

  • Nancy

    Hi, I’m Mateo’s mom, of @mainstreamingmateo. Is there an adult Down syndrome doctor or clinic in your area? Connect with a local children’s hospital that has a DS clinic, they might help even though Joel is 18 they should help. Or, get a referral from them. Another suggestion which is not a traditional medical answer is to look into alternative medicine. Look for Dixie Lawrence on Insta and on FB. On FB she has a closed group for DS families. She is a homeopathic physician and treats regression and other issues in our kiddos with diet changes and supplements. I’ve read posts of families seeing a difference once they start her treatment plan. Regression has been a topic many parents have asked her for help. Hugs. You’re a great sister! Keep us posted.

    • downwithjoel

      Thanks. We have no DS clinic anymore but we have reached out to our Office for Citizens with Dev. Disabilities for a behavioral referral but things move very slow in our area. Thanks for the advice I will look her up.

  • Katyn

    Hello!
    I’m a speced teacher. Love your brother and blog! I’m also impressed with you as a human (:
    I would worry less about if he is ‘regressing’ and move about treating the behavior as it comes. Ask yourself what are things you did the helper rid him of the problem behaviors in the past?
    The other thing I would suggest is completing an FBA. You can do most of this at home without the help of a behavior specialist. This would track the behavior (choose one at a time) and should give you some insight as to why this behavior is happening.
    I would be more than happy to help you in this process if you need.

  • Kristine

    Hi there. I am Jacob’s mom. We have connected via instagram through my son’s page (theextraordinarylifeofjake). I have been meaning to message you regarding your post about Joel’s regression. I can’t say for sure if this is what Joel is going through, but I did want to share with you our experience as there are some similarities in some of the things you noted in your blog post. I hope our story can be of some help and hopefully you can get to the bottom of what is going on with Joel.

    Jake is turning 14 in a couple months and is the 9th grade. Jacob went through a very difficult phase around the time he was in 6th grade, I want to say. Jacob became very violent during this time and combative. He would attack, hit, throw, yell, spit, curse and cry at the top of his lungs when he would have a violent episode. It was a very hard time in our lives as this went on for a while. Prior to this phase, Jacob was never violent. He never hit anyone or had any behavioral issues like this. I tried searching for answers and asking his school, teachers, doctors etc and they all believed it was due to a mixture of hormones and puberty, etc. I should also mention that Jacob would only ever physically hit or try to attack me (and only me) during this time. I was told that the reason being is because he is closest to me…I know that sounds weird, but it did make sense once explained. Thankfully, this phase did pass and we were able to work through that tough time. Since then, Jacob has not been violent or anything that I mentioned above (thank you, lord). Jacob was back to his fun, loving, silly self. He loved school and was the only special needs kid in his whole middle school to join band class and learned how to play the trumpet, was in after school programs, music lessons, took transportation to and from school and was a very active full functioning kid.

    Early last year, in 2017, I started to notice a change in Jacob. There were no “warning” signs prior to the first day I saw it happen. During this time Jacob was doing wonderfully in school, was in the after school teen program I mentioned and taking outside music lessons for both drums and keyboard. He was doing so great and we were in what I felt was such a great place in our life, more importantly -his life. Then one day I noticed an involuntary arm movement when we were hanging out at home. I didn’t think anything of it, but would then start to take notice that he was continuing to do this arm thing where he would raise it and make this involuntary movement. Then I began to notice on top of the random involuntary movements that when I would speak to him at times he would look at me but almost “through me” if that makes sense..almost like little moments of “zoning out”. At first I thought it was regression. Which is typical in downs right? But something in my heart knew there was something more. It just wasn’t settling well. I’d say all this mentioned above was a duration of about a week or just shy of it until I took him to the doctor. I know I probably came off as a crazy mom at first but I went in with the mentality that I would not leave until I could get some answers because I knew something was just not right. I was terrified. I had never felt like this in all my years with him. I explained everything- the zoning, the looking at me but almost as if through me, the involuntary movements. Thankfully, the doctor that I made this appt with was a compassionate doctor and could see that as his mother I knew something was wrong. She was concerned and actually observed the involuntary movement happen and she is the one who said it seemed like “ticking/twitching”. She was concerned that maybe he was having seizures while awake (which would explain the episodes of zoning out and movements), or she thought possibly it could be Tourettes…She didn’t feel confident in making a diagnosis herself, so made a referral for Jacob to see a neurologist as soon as possible. within weeks my son started to deteriorate before my eyes. The involuntary movements became constant.The zoning became constant. He started to have increased self talk mixed w gibberish but would seem angry or emotional. He went from being completely independent with all ADL’s (bathing, toileting, changing clothes) to completely dependent….as if he was infant again in that area. His safety awareness started to decline. He would open the front door during these episodes of “zoning out” (he knows to never open the door without asking) or pace around the house with his head down not being careful of what is around him or what he could run into. I caught him jumping in the shower during one of these zone outs and when I went to go check on him and got his attention, it was as if he didn’t even realize that he was just jumping x amt of seconds ago. Our life turned upside down in the blink of an eye. Jacob could no longer continue any of his extracurricular activities and stopped transportation abruptly due to safety concerns for him and for others. We did everything- bloodwork, EEG to rule out seizures, MRI with and without contrast (ordered by Neurologist) to rule out possible stroke that went unnoticed (common in special needs children) with an early onset of Alzheimer’s (which would explain the decline in his ADL’s. This was a long drawn out process due to appt availability and anything else that you could think of to make our lives almost unbearable.I drove county to county. It didn’t matter where I needed to go. Wherever there was a possibilty to get an answer- we were there. I thought I was fighting against time. My son was deteriorating before my eyes and no one could tell me what was going on. Every single test came back normal. His neurologist diagnosed him with an organic brain decline and said that since Down Syndrome is so complex, these things can happen without any explanation. They can improve, but also, they may not- I felt defeated. Jacob was put on medications (used in Autistic kids with behavioral issues) for safety purposes for himself and others. This all started around Feb 2017 and finally got the diagnosis by June 2017.

    It had progressed so much that Jacob could no longer be watched by anyone but me. Unfortunately, I had to leave my career by around sept of last year to be with him full time. We finally were able to make an appointment with a different Neurologist in a different county that actually specializes in Down Syndrome. This specific children’s hospital was the only one within driving distance that had a down syndrome specialty unit. We waited months for this slot. We finally were able to see her as of March this year (can you believe it’st been a year later and this is still ongoing!). Thankfully, I can say she has been so great. After going over a years worth of information in our Eval visit, she was immediately able to further pinpoint his “organic brain decline”. This Neurologist has seen over 800 patients with Downs herself in her time working at this clinic and stated that out of the 800, my son, Jacob was 1 of 20 patients that she has witnessed this happen to. It is such a rare diagnosis that there isn’t even much literature on it anywhere including online. She stated that it’s because of the small population that they are starting to see this happen to and without any warning. Basically, Jacob is part of their study on this diagnosis now to collect more data for the future. As of this year he was diagnosed with Disintigrative Disorder with a form of catatonia (which explains the involuntary movements) and also Autism Spectrum (which would explain the behavioral aspect of it). The Disintigrative Disorder is the diagnosis that has very minimal literature on. From the data that they have collected so far, they are not sure as to why it happens. They think it could be due to a huge change that could’ve happened in their life (sister moving to college, parents divorce, bullied at school, death of a loved one, etc) but this is only again what they “think” it could be related to. When she had me think back to anything that could’ve been out of the norm or anything going on at school that may have been overlooked- I had nothing. I can’t stress to you enough- before that first day I noticed that involuntary movement last year- everything was going well for Jacob and he was in a very good and solid place. She agreed and said that other parents too have tried there hardest to think if anything was different and those parents could not come up with anything. She was able to tell me that one parent said that the only thing they could think of that happened prior to their child pre decline, was that someone called her ugly in school and her feelings were hurt, but they couldn’t say for sure that that was even the cause. There’s still much research to do and unfortunately, my son is a part of this research.

    She gave a bunch of referrals and lots of things to keep us busy with. Currently I am still unable to work due to the amount of appts and therapies we need to attend weekly, but it has all been so worth it. He has come so so far and I can say that a lot of the things I prayed for last year I am grateful for this yr! Jacob is still taking medications, but we have adjusted it to its lowest dose and he is tolerating that well !(hopefully in the future can completely wean off). He is continuing to be followed by this Neurologist and also has a psych doctor to help better manage his meds. I went thru ABA therapy classes to help educate myself to better help him to where it ended up being so successful where we were able to manage on our own after the classes and were able to gladly opt out of needing an in-home ABA therapist come. He has been in speech therapy outside of school (also a referral made by neurologist) and he is followed by his primary doctor as well. All this and work, time and patience, Jacob is beyond exceeding expectations. He isn’t quite fully where he was prior to his decline, but he has definitely come so far and is on his way there! He is now able to continue with his IEP goals again. He started back on transportation when this school yr started after being off for a whole year and has had no issues and is loving it again! More importantly, we are able to do more and more things again in public places without it being extremely difficult. I should add that as of now this Neurologist did state that out of the patients that she has seen this happen to – “they do improve, but unfortunately, not ever to the capacity they once were.” I am now in a place where I can confidently say that I think Jake might just throw them a curveball and hopefully there will be different words said to parents with cases like ours in the future.

    I know this is a ton of information that you probably didn’t need, but I felt the need to reach out because you just never know. We didn’t, and we didn’t have anyone that could even understand in the slightest what we were going through. Maybe this isn’t specific to Joel, but I felt the need to share with you anyway. If I could prevent or be of help to any family so that they don’t ever have to go through what we did then I would do it in a heartbeat. Every child is unique in their own way and can progress in different ways. The decline progressed pretty rapidly with Jacob, but I know for others, it’s been different. I hope this email helps in some way. We are sending our prayers and positive energy to your family and Joel. Please feel free to stay in touch or reach out if you have any further questions or anything.

    Best wishes.

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