My little one with autism is approaching 3 1/2. He’s a great little guy with a ton of personality and he’s so smart. I have watched him grow for the past few months in his therapy at school and it has been so exciting. We got a progress report recently showing he is meeting all of his IEP goals.
I have felt hopeful. I have felt proud of him, and often filled with intense emotion watching him advance. I have felt many things, but disappointment has not been one of them.
Over the past 10 days or so, we have seen major regression but it has only been at home. I have spoken with his teacher and his day care provider and they have seen no change in him. He’s still doing really good.
So why are we having so many problems at home? I just don’t get it.
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I think you should take a day off to observe his behavior at school and day care yourself. If he’s really fine at those places but regress at home, I think there’s something wrong in your home that you have to figure it out. This might not be an autism issue.
Aaron, you have the same misconception that most people have when discussing autism. People always think that it is something the parent is doing wrong. This is not the case. These children have no concept of the world around them. This goes so much deeper than what I believe you understand. As parents and grandparents struggle everyday to nurture our autistic kids, it is heartbreaking to hear someone, especially a stranger, tell us that we are not doing everything we can to love and care for our children. We stand back and watch our children more than anyone, observe their every move and emotion. Then cry at night realizing the impact of knowing our children will never be like yours. That we will go through life with no normal vacations, family visits, conversations, trips to the grocery store. Everything will be a daunting challenge as we try to keep the rest of our children on a path of success, our husbands sane, and the rest of you satisfied with our efforts to make life as normal as possible for everyone else. I mean this in the most kind manner. So many people truly do not understand. Best Regards…
I am sorry cmgarr that I made you feel bad. I didn’t say that the caregiver did something wrong. I am saying that autistic child perceive things differently than none-autistic. And something, not someone, in the house is bothering him. I said it wrong when I said it’s not autism issue, It is really autism issue. I suggest something that does not bother none-autistic person is bothering him now because I can not think of any other idea why he is just regressing at home.
I’m sorry you are seeing this with your son. I teach students with severe autism and find this kind of thing is normal when a lot of learning is going on the bottom falls out somewhere. My suggestion is keep positive, continue with the plans you have in place, remember behavior has motive to get out of something or because something was taken away. Help him with using the basics, schedules, visuals, now then strips. Best wishes. Don’t forget to take care of yourself.
It’s a tough spot you are in and it’s good you are reaching out for support. Kids of all abilities are very perceptive and in-tune to their environments and may act out or respond to any changes we as adults may overlook.
I’d ask you to look at how things are going for you and/or your partner at work, school, with the weather, with routines, responsibility, financially, socially, etc and notice what things might have changed and what has stayed the same.
When we as adults are less available to children for whatever reason, be it due to things like increased responsibility or stress, health/wellness issues, limited attention or time, but most often being less available emotionally, it seems our children’s behaviors can (and often do) get worse. Children of all ages have limited ability to verbalize at an adult level what they are needing, and often resort to using their body and behaviors to communicate their distress and/or discomfort.
If this might be the case, I would encourage you to look at what things you can do to increase you and/or your partner’s self-care, e.g. meditation, mindfulness, spirituality, bubble baths, eating better, shifting responsibilities/duties, getting into the dr, connecting with family or friends, reading a book, being in nature, etc. to restore your balance, and just notice what impact this might have on your child(ren) and their behaviors.
You are not alone, my grandson is the same way and now that he has reached puberty it’s gotten worse. He is still not potty trained and tares things up. It’s not your fault!! It’s nothing you are doing wrong as other’s would like to make you think. We have known he was autistic at the age of two. Just when you think your making progress they digress. It’s the most exhausting battle one could ever imagine. You can have no nice furniture or knick knacks. Your dishes and decorations get destroyed. Flowers are eaten along with Christmas decorations. Pica disease is often associated with autism. If your child is eating things that you would never stick in your mouth, research Pica. Please don’t think that this is something that you are responsible for. It is a disability that we, as parents and grandparents, need to understand, work with our kids, and the hardest part… tolerating those who don’t understand our plight. God Bless You! Hold Fast! Most importantly, PLEASE, PLEASE, PLEASE take time for you. You can’t get lost in this. It is crutial that you have support! Love always…
Please feel free to contact me! Don’t hesitate to email me. Believe it or not, you have someone here that can soooo relate to you! God Bless
Google Vitamin D and there are many articles on this Vitamin helping with Autism. Dr Cannell has a blog too. Many people are low on this Vitamin.
I’m sorry you’re having this stress, it’s no fun & definitely a work in progress. I to have a son with Autism & it’s very draining. It’s hard to find solutions while being in the trenches of raising a young one w/ autism. The diet concerns i found are very normal, try smoothies & mix in foods he may not normally eat. Sometimes the texture of foods turn off the child so that may help. We used to supplement pediatric drinks to make sure our son got the right nutrients, we even have to chop up his multi vitamin for him to take it. Just some thoughts, check w/ his Dr. for other ideas too. Don’t forget self care as the above person stated, it is a necessity! Best wishes & prayers sent your way..
It is common that a child will improve and then regress, particularly at home, I used to work in a school for the NSPCC for children with special needs and many parents had the same issue as you are having.
One of the factors is often that schools have more structure than home environments, and of course they need to have. I found that children with Autism function and respond better to a higher level of structure, so the school and learning environment is often easier for them than home is.
You could look at trying to put some more structure in to your child’s home life and see if that helps, maybe you have already?
Another factor could be, has anything upset your child at school recently, it is work asking his teachers.
Good luck and I hope things improve for you and for your child.
Paul Parkin
I am having the same problem. My son is 6 he has in recent days become depressed and overly anxious. He has autism. I feel helpless. He is telling us he is seeing things that are not there. I am worried about the regression he was doing well but in the past couple days its worse than ever. Please if you find how to possibly fix this please post or let me know through email. Thank you.
I was doing a search for bipolar mom when I came across your blog. Not only am I dealing with the recent diagnosis of bipolar (apparently I’m the last to know as no one else is surprised), but I have three children, one who is autistic! Is your some going to occupational therapy? It sounds like he’s having a lot of sensory issues. As for the potty training, my son is just about to turn 6 and he is JUST STARTING TO POOP ON THE POTTY! This past November, the gastroenterologist diagnosed him with encopresis. Basically, they withhold which stretches out the rectum. Over time, the muscles thin out and the nerve endings are under sensitive so they don’t feel the having to poop sensation and it just comes out. I highly recommend bringing him to a gastro as well as an allergist. Make sure he doesn’t have any gluten or food issues. If he doesn’t have any food issues, you can bring him to an OT and they should have someone available to help him with his sensory issues regarding food. Don’t give up hope. He can’t tell you when something is wrong, hence forth the spinning. My son has just started spinning a lot. As your son grows, his stimming will move from one thing to another, but it always means something. An OT can be such a help to decipher these different regressions. Best of luck and I will be following your blog as we seem to have a lot in common!
Some children do better in a stricter more structured environment. When left to their own devices or allowed to make too many choices some special needs kids/adults crack under pressure.
Hello Beth,
First time comment and I just found this awesome blog. I have bi-polar disorder, I know that I do. I have every symptom and my “tornado times” have caused much pain and destruction through out my life. I am on a path to finding a psychologist who can help me navigate my mental illness and I found this blog. I have two children with autism, both with varying degrees of high function to areas where they struggle greatly. I feel so glad to hear about your life and the areas that you have conquered. One area that I have been able to have success in my life is that of my youngest son who has a more typical autism than my daughter who is much more high functioning. My son can not attend school or childcare. I tried that for so long and honestly, my bi-polar was easily triggered by the anxiety of ridicule and potential mistreatment of my son so I chose to work from home and educate Cade myself. He is infinitely happier than I ever imagined possible. His self confidence and self worth are very high and he is so loving and emotionally intact. I am just writing to tell you that I know how you feel…laying awake at night worrying about the many variables that could happen to our children is the most difficult part of my illness. One time, I went off on my sons teacher when she grabbed his arm and gave him a mean look. I took him out of school.I think most parents would react the same way. However, this is what really brought my fears to life and made them concrete in my mind as being absolute truths about his life and the things that I feared most for him. Thank you for being so open and honest about your mental illness. It helps me be honest, which is very hard for me.