Separation Anxiety

In our ongoing “spring cleaning” (which never seems to end) I came upon a large spiral notebook filled with notes from the dozen or so ABA therapists who came to our home beginning in November, 2004 through August, 2005.  Emma was just two years old when all of this began.  It’s a fascinating document of that time period and it depresses me to no end.  Over and over the notations remark upon Emma’s “clingy-ness to Mom”, her “whimpering” and “despondency” when I would leave the room and her internal discomfort.

It is impossible for me to read the notes and not see an obvious pattern.  For a therapy that prides itself in collecting data, it is curious that this larger and, what seemed to me anyway, obvious pattern was largely ignored or, perhaps it is what naturally happens when we pathologize a neurology.  Emma’s desire to seek comfort and assurance from me, her mom, was seen as a negative, something to be trained away, something that was getting in the way of more important things.  It is ironic that this was being said about a young child who was diagnosed with autism, which has, according to all those experts, as one of its most defining characteristics, “social impairment” and an inability to form close bonds.

A two-year old not wanting to go off with a stranger is considered a “good” thing by most people.  That this same child would prefer being with their mother, even after getting to know someone else, would still, in most instances, be thought of as an excellent example of bonding and having a close relationship with one of the most important people in that person’s life – their mother.  After all, if you cannot trust your mother to protect you, to be there for you when you are two, how will you learn to trust anyone later in life?

Richard and I talk about “what we would have done” all the time.  Not as in – what would we have done if we could do it all over again – as much as, what would we do now if we had a two-year old today who was just like Emma.  And the first thing, the absolute first thing would have been PRESUME COMPETENCE.  That is the key, the foundation by which everything else would have been gauged.  This does not mean expecting a two-year old to understand, know and behave as a twenty year old.  It means we would have presumed she understood and felt what a two-year old is capable of understanding and feeling not less.

When Emma began her ABA based preschool in the fall of 2005, I was told to drop her off and immediately leave.  Yet when my non autistic son went to preschool they had a three-week “transition period’ in place where parents routinely stayed with their child, slowly reducing the time they stayed until eventually the child separated from their parent when they felt comfortable to do so.  Each child was different.  Some children ran off within the first few days, others needed more time, some needed several weeks, but no one said, “Leave now, even though your child is hysterically crying and clinging to your leg, it will be good for them.”  I remember asking about this at Emma’s preschool and being told they didn’t allow parents to stay with their child as this only prolonged the child’s suffering.  How is it that one method is good for one child, but not another?

Knowing how sensitive my daughter is and was, knowing how intensely painful this must have been for her, I can only sit here, filled with sadness that we just didn’t know better.  It was as though, when we got her diagnosis, all common sense left us.

So I am asking all my Autistic friends – What would have helped you when you were a small child?  Would it have been helpful to have your parent stay with you until you were comfortable and felt safe enough to go off on your own?  Would you have liked knowing your parent was there, even if you didn’t need to be right next to them?  What do you advise parents new to all of this?

OT session ~ 2005

OT session ~ 2005

57 responses to “Separation Anxiety

  1. Hugs to you Ariane!
    Diary wrote a post a couple of days ago and your post goes really well with it. (http://adiaryofamom.wordpress.com/2014/03/19/just-what-these-kids-do/) I have the same feeling response here as I did there (just like you feel): Thanks to you and other parent and autistic bloggers that you lead me to, the phrase “If your child/friend/whoever were not autistic (or other), would you do/say _________?” is branded on my brain. If you wouldn’t act/speak, etc. like that with your “typical” kid/person, then don’t behave that way with your autistic/other-special people.

  2. I am going through “drop her off and immediately leave” at our ABA school now Ariane, so I understand your feelings as this is our first month at school. I am only allowed to say goodbye, give her eye contact and walk away. nothing had changed in more than 10 years. I just hope that my child is only 4 and she will not remember this.
    thank you for your post Ariane.

    • Marina – please, please, please do not do as they are telling you. Do NOT trust that your child is too young to remember. Don’t assume your child will forget this, or that it is for “her own good” or any of the other things they might tell you. Separation anxiety is a natural feeling ALL children feel. It is not to be ignored. It is to be respected and acknowledged. Take care of your beautiful girl and know that in honoring her feelings now, today, you will be modeling and teaching her one of the single most important lessons any of us will learn in this life – that she is important and that her feelings are valid and honored.

      • thank you thank you thank you…

        May be I am an extreme case myself but my own first memory is from the time when I was 6 years old. My parents divorced when I was 4 and I had to live with my grandmother for a while. This could be a reason for the memory lapse.
        it was wrong to assume that my child will remember nothing I guess but its too late now…

    • They will remember, mine do at 18 😦

    • I agree with Ariane. I too wish we had known – wish I had pushed the issue more when our son displayed signs of being unhappy with things at that age. It’s hard to know what the alternatives are – but you are definitely allowed to disagree, get an advocate who will back you up, and by the way, I don’t think they can legally tell you to just leave.
      I’ll tell you right now I was the most vocal at his school back in those days: I would just drop in, or when they tried to seat him in restraints (for children who are liable to harm self/others) instead of the safety 5 point seat I was pestering for, and to add me to the insurance rider so I could actually get on the bus and be sure that he was being seated safely and not mistreated…but I always got my way in the end. Because I was smilingly persistent on those things I did understand – and wish I had been on the other things Ariane mentions.

    • My husband, who isn’t on the spectrum (but probably skating the edges as it runs strong in his family) remembers things from when he was 2. If you wouldn’t allow it with a typical child, don’t allow it with your special child. Behavior is communication and not every behavior needs to be corrected.

      Trust your mommy gut, and dig deep into this blog. Many professionals are great, but quite a lot of them do not have a clue about our children, regardless of how many letters they have after their names.

    • “I just hope that my child is only 4 and she will not remember this.”

      She will. Bet on it.

      Vivid and detailed early childhood memory is common in autistic people.

    • Ditto Ariane. If they won’t let you stay then maybe it’s not the right program. I am very lucky that the places where my girls have been are open to letting me stay for as long as the girls need me.

    • I remember back to age two that I am sure of, possibly earlier but I can’t fix a firm date on those earlier memories. I remember watching the moon landing of 1969 on television and I was born in 1967. And I remember Wanda Whitten, the babysitter who lived on the street behind us, saying not to worry about one thing bad that happened (that I don’t wan to talk about here), that I wouldn’t remember it. Not only do I remember, I remember her saying I wouldn’t. I have seen discussions, including from Lynn Soraya on her Psychology Today blog, that seem to indicate that we Autistics have MUCH stronger early memories than allistics do.

  3. This kind of ABA thinking is based on notions of training away behaviors instead of easing transitions. It is at odds with what most modern people today consider a good idea, as you can see in the phrase, “don’t stuff your feelings.” In other words, the rest of early childhood education moved on when our culture moved on, but behaviorism did not, which is what causes this disconnect. I am autistic, and the same thing as a person. When I was an autistic child, I was the same thing as a child. You know that now, and feel it in your heart, but even the kindest ABA practitioners were trained to tell you something slightly else. Love, Ib

    • Because autistic behaviours are pathologised instead of accepted as a different kind of normal, “easing transitions” (which is considered normal with neurotypical children) is actively constricted with autistic children BECAUSE we have trouble with transitions. And therefore it’s a bad thing to accommodate. Logic much?

  4. ((((hugs)))) I still feel the same negativity about leaving my little girl at nursery when she first started and used to cry for a lot of the morning and I was told she would get used to it so I can understand a bit how it makes us feel but you are obviously such a good mummy that you now (as I do) listen to your own gut instinct xxx

  5. We did ECFE for a hot minute. ECFE in our state is 1 hour a week. The goal is to eventually separate the tots and parents. My son was the only kid that really struggled. He SOBBED. And as a result spent most of the time in the parent room with me. The other parents looked at me like a bad mom. I got more sympathizing looks than I could quantify. REALLY?!? This is not a tragedy. I’m happy that cooper is aware of me and my presence. Yes, I know there is a happy medium but the way I was made to feel was ridiculous. We eventually quit for a multitude of reasons. Anyhow, such a great observation.

  6. Gosh this takes me back! My daughters were just the same, leaving them at nursery was utterly hideous for everyone concerned, even though they had each other they still just wanted me there. Stupidly, so stupidly, I did what I thought was best and left them, having peeled their fingers from me. I didnt want them to turn out like me, and foolishly believed I could make them be sociable by inflicting this separation on them. I will never forget the two facedness of the other parents who offered sympathyband understanding to my face but bitched and belittled us behind our backs. Eventually we discovered home education and gave them the choice and of course they chose home. I then spent many, many years rebuilding their trust and giving them the space to grow at their own pace. It took a lot of faith and patience, which I wish I’d had from the outset, but hindsight isnt terribly helpful. Of course, eventually we learnt that all three of us are most likely on the spectrum, and so much was suddenly crystal clear to us, and helped with our ability to go easy on ourselves and not deride our differences as faults, for the most part anyway.

    So, eh hem lol to answer the question, what would have helped would have been acceptance of our difference, not everyone is nor needs to be a social butterfly. Being given time to adjust, to be and grow in our own time, not to have other people’s opinions of what we ought to be doing forced upon us. Acceptance that we are valuable in our own right, just as we are. And separating when we feel ready, no matter what age that might be! Why the hell should separation be the end goal anyway? It seems like the most bizarre desired outcome for any human being, but particularly so for those who have problems around social functioning, as you say.

  7. Ariane and I had a long conversation about these topics before she wrote this post and I must say I’m blown away by how powerfully (and elegantly) she summarized all these very difficult parenting issues. It is astounding to me after reading this, that the behavioral “therapy” imposed on autistic children is almost universally regarded by medical and educational “experts” as the “proper” method for “treating” the “problem.”

    Pardon all the air quotes but I can’t use these words without pointing out how ridiculous these assumptions are.

    Ib’s comment above nails it (of course it does, Ibby wrote it!):

    “This kind of ABA thinking is based on notions of training away behaviors instead of easing transitions. It is at odds with what most modern people today consider a good idea, as you can see in the phrase, “don’t stuff your feelings.” In other words, the rest of early childhood education moved on when our culture moved on, but behaviorism did not, which is what causes this disconnect. I am autistic, and the same thing as a person. When I was an autistic child, I was the same thing as a child. You know that now, and feel it in your heart, but even the kindest ABA practitioners were trained to tell you something slightly else”

    If ABA continues to be thought of as the most efficacious “therapy” for autistic children, knowing everything we have come to realize about human psychology, maybe it should be supplemented with leeches and blood-letting. Just a thought.

  8. Us folks with autism diagnosis are not typically treated with the same regard as others our age. It doesn’t matter if we are 2, 12, 22 or even all the way to 58 (my current age). We simply are not viewed as real human beings by most. Lots of people speaking out like you do over time will help change this status quo so much thanks to you for your continued effort.

    • I tried to write abut this exact thing earlier but 6 pages in and it wasn’t getting any more coherent. I am 45. Yet there is a current major storm about my support because the group most responsible for it has the majority of staff people seeming to forget I am a human. As the majority cannot seem to get that straight very few interactions with them go smoothly. This apparently makes me manipulative as of course I strongly prefer the few (less than 1 fifth) who do.

      I didn’t even know that was a hallmark of manipulation until the people from another group who find me uniformly polite, cooperative and cooperative were explaining a meeting they had when deciding what to do as they had an ethical issue with the other group (the second group are all nurses and my health has suffered badly enough they felt in violation of their professional code of conduct if they didn’t take a stand)

      Meanwhile a third group who I sit on the board of and was a founding member of the non-profit also want to enter the fray but it is pretty pointless as since I am not a real human even though my doctor says the only thing he never wonders about is my competence the options are essentially that being supported by the group where almost no one views me as an adult human who is in need of support (which is presumably what they get the big bucks for so uhm why don’t they understand this?) or because of my horrifically low scores on skills of daily living no dog, no ip address I control and hello living with a bunch of old psychotic women because that group home always has room.

      I have autism. I don’t really think expecting to be supported by people who don’t yell and scream in frustration or tell me they need to protect their staff from their hurt feelings when I act autistic (I plead guilty to failing to speak and closing the door on people but I have never been verbally abusive to any of them and the majority of them cannot say the same when it comes to me)

      I just want to have a life. I don’t need it to be a pitch battle just to get that I am human and have needs and desires and goals of my own recognized.

      • (((Gareeth))) I hate that you continue to have to endure this kind of ineptitude. Virtual hugs are completely inadequate in the face of all you are going through… but I’m sending them never-the-less

    • Judy – sending you tremendous gratitude for all you do and continue to do. For those of you unfamiliar with Judy’s work, please go to her website – http://www.judyendow.com

  9. It’s true that we were fed this method, all of us, and still are. It’s the single biggest reason kids are underestimated, I’d be willing to bet.
    Right now, having to challenge the special ed teacher – she pushes him more than I’d like for language at this point. Have been telling her we’ve shifted our perspective, but she can’t get out of the paradigm.
    Since we accept grunts and one-word answers from everyone else, including our younger son, why not the older one? Why does he always have to be spitting out rote sentences? Answer: he doesn’t. His para happens to agree, and has been letting him answer how he feels he can when she’s with him.

  10. With Sophie being the third of four siblings very quickly I became aware that many people expected me to treat her differently than the others- but I’m kinda stubborn, lol. As much as possible I do what I did with the other two- so if I wouldn’t leave them somewhere at 2, I didn’t leave her. My older daughter started nursery at 3, and sophie did as well, her own preschool. If I would hug and comfort my older two when they’d cling to me, I did Sophie as well. But quite honestly, nobody really fought me on that. If someone commented “oh I see she’s really attached to you” with a hint of negative connotation, I’d reply “of course! She’s my baby girl”. That’d shut them up 🙂 another thing though, Sophie is by far the most outgoing of my kids and never minded separation as much as the other ones- she loves to do “stuff”.

  11. Pingback: love, attention, and autism | TAG: The Autism Gathering

  12. I was not only dropped off at school everyday, I was sent to a luxury institution 200 miles from my parents. At the time they were told it was the only hope they could have for a decent existence for me.
    It does not end there. As a teenager I was supposed to be a grown up and not look upset to be back at the boarding school. My friends couldn’t even talk about their parents after a phone call with them because that was considered an obsession and not good behavior.

  13. This is exactly when I did not start my son in school until he was 4.5….the age that most kids start 4K. I was pressured to start him when he was 3, but personally, if I wasn’t going to send my other child to school at 3, why would I send him? Once he did start, I spent the first 2 days with him at school, and when I saw that he was comfortable and that his teachers understood him, I left him alone. I do regularly volunteer in his class. His school is good about letting me be there…today I dropped him off without his younger sister in tow, and spontaneously decided to stay for his OT session. No complaints from anyone. But you are right, generally we are much more accommodating to a NT child who is having separation anxiety. My daughter will start preschool in the fall. The teacher has the parents stay every day and do a project with their child, and gradually shortens the length of the project (and thus the time that the parents stay) until it is just a drop off. Now there is a teacher who “gets” 3 and 4 year olds!

  14. I feel so much regret for leaving my child at preschool. I just asked him and he told me that he remembers how sad he felt when we would drop him off (he’s almost 8 now). He told me that pre-school was terrible, but that he had no way to tell anyone how sad and anxious he was. The signs were there…he went from being a happy, cheerful baby to chewing on his collar until his whole shirt was wet, chewing a big red mark below his lip, and picking at his thumbs until they bled. And he just looked unhappy and stressed. So horrible. Now, of course, we know that he has very significant sensory issues, and intense anxiety.

  15. I also have a daughter who is not autistic, but she does have some characteristics like sensory processing differences. She was so excited to start preschool that she packed her backpack every day and pretended to wait for the bus. So we signed her up, about a year earlier than we had planned to. The preschool made no allowance for a parent staying to ease the separation anxiety. They expected us to drop her off and leave, so she would “adjust.” We were told it could take as long as 3 months for her to “get used to” being dropped off. Preschool was not at all what she expected, and she was horribly stressed by me leaving. So we quit! Not all preschools are concerned about how separation anxiety affects children. It’s one of the most highly regarded programs in our city, too.

  16. LOVE this post 🙂

  17. Small children aren’t supposed to be independent. Small autistic children really need an anchor. I don’t understand this big urge for early independence.

  18. My parents actually did really well on this front when I was a toddler: They explained to me with cartoons and story books what was going to happen. Then they took me to the pre-school for an after-hours tour. Twice. Then they took me to meet my teacher at the pre-school. Then they let me go see the pre-school in session and helped me find a quiet place I could go if I got scared (inside one of the cupboards was what I settled on because it felt safe and warm and the heavy wood door muffled the noise well, but a crack in the top helped prevent it from getting too dark).

    They started me on half-days at first, for a week or two, and then I graduated to full days with one of them visiting at lunch for a week, and then I was ready to stay all day on my own.

    Probably the least-painful transition point in my life, and definitely helped out by the fact that the pre-school instructors were absolutely stellar and didn’t mind at all that I was a weird kid who liked to hide in the cupboards when things got noisy – in fact, when they realized it was a noise issue, they took me and a few other kids who didn’t like noise to a separate room during free play time so we could spend it in a quieter/calmer environment.

  19. That’s always been ABA’s easiest to strike at weakness if people are standing outside of it and not convinced it is the “only hope”. They collect copious amounts of data but if they read what they recorded they never think hmm any kid in this situation would have issues so hmm guess we should go home now and call it done… They don’t even realize when the goals they set have been achieved because every autistic way of doing it is made into pathology so pity the kid making repeated social attempts using a few words they have as they are perserverting on a person and being echolalic. I mean are you kidding me? The kid can say 20 words tops and if she is stringing an impressively hard to say name together with a few of them and repeatedly seeking to engage socially they would try to stop it…

    Well actually that little example was the fastest I ever got a kid out of ABA because the evil use of my degree has mainly been to be able to say in nice behavioural terms how they have failed to observe somehow that the child has met the goals they thought would be achieved in a few years or so. That is engaging with people. Spontaneously seeking to share mutual interests with those people etc… etc.. and it all gets lost because they don’t like how autistic the expressed desired goals look. Uhm yeah the kid has autism. Please someone pay me a good salary for spending 40 hours a week fixing an ABA therapist so they could see that what they were looking for was already there if they were not perseverating so much on how it was packaged.

  20. I am not a touchy feely person but every time you write with regret about this era I wish I could hug you. You learned faster than many people to rethink what you were being told and better than that you keep admitting your regret and your errors so others are prevented from the same.

    On a smaller level than the whole well ABA was a nightmare mistake and most of what you first thought about your kid was wrong you keep admitting when you have to rethink your more current thoughts. You are a wonderful example as people get stuck all the time on not being able to say hmm I was so sure of this just a month ago and now I have no clue.

    A world where everyone could say well gee I get it wrong pretty often so maybe I should just keep my mind open to the possibilities would be a better one and if I had not been running for dictator of the new and improved world since I was born I would cede you my crown.

    • Thank you so much for this Gareeth. Really. It means so much to me. I love that you wrote, about hypothetically thinking “I was so sure of this just a month ago and now I have no clue…” That made me smile, as it’s a perfect description of my current thinking on a daily basis.

      Also… so glad you’re running for dictator, you have my vote, wait, no, dictator’s don’t need votes, just power… well either way, I’m a huge fan and happily bow before you in service and gratitude. 😉

  21. We didn’t ever enter into ABA but I looked into it and met with specialists, and honestly, it seemed like a cult. Either that or people absolutely convinced in the program to an almost cult like level. Sorry I am not a believer.

  22. Hi Everyone,

    As always THANK YOU Emma and Ariane for continuing to communicate your thoughts and feelings about Autism. Sharing your lives with the world is truly amazing! When reading the responses to your post my heart breaks for all of those children who are undertaking ABA. I say this because I too was faced with the decision of doing ABA with my now three year old son. Having a teaching background and knowing that a positive and supportive approach and therefore positive relationships is ‘key’ to learning success (and not just the repeated practice of a skill) and knowing how ultra sensitive my son is, I knew that ABA was not the right approach. However, I knew that we needed HELP!

    So I searched the world for a program that I thought might be able to help our son. We found THE SON-RISE PROGRAM. This program operates out of the United States and parents from all around the world are trained in how to work with their child/ren. THE REASON THIS PROGRAM WORKS IS BECAUSE OF IT’S APPROACH!!! There are many parents who are now using this program with their children who have previously been involved in ABA. These parents have told similar stories about how they didn’t know whether putting their children through ABA was ‘worth it’! PLEASE, PLEASE, PLEASE google THE SON-RISE PROGRAM!!! It is a lot of work, but we have our son back and it has been and continues to be SO worth every ounce of our time.

    As a fellow parent with a small child with Autism I know that you are doing ABA because you are trying to help your child and an alternative program hasn’t been suggested or offered. I have no judgement of you whatsoever. I know that you are doing your very best. I am just trying to provide you with an alternative as I know that it can work. If you would like more information about The Son-Rise Program I would be thrilled to speak with you about it.

    Wishing yourself and your child all the very best for the future.

    Kind regards

    Kylie

  23. When I read of Emma’s reaction, my immediate thought was ‘you are the only person she has, the only one who cares for her.” Reading further into the matter, I can see that being ‘trained’ by means of ABA was intended to cause her mind to implode upon itself, such that she would essentially become ‘Societally Codependent’ as a narcissistic extension – much like I was taught to be by being separated from my mother during the instances where I was being ‘fixed’ in the hospital.

    Society’s tendencies only made that early situation worse, so much so that I’ve only recently realized that I’m more or less empty inside – that I can only be ‘whatever my owners wish me to be’ – only I’ve yet but little idea as to what that tends to be.

  24. Oh if only my parents could have stayed. The terror of being left with people who do not understand you or know you, who seemed to speak a foreign language. If only my mom were there to interpret and explain and protect.

    If it feels wrong leaving your child, do NOT go against your instincts. Don’t let ‘experts’ tell you they know better than you what your child needs.

  25. lilytigerheart

    Definitely go with your gut instincts and stay with your child. Demand it, if necessary! I can remember traumatic events as far back as the age of 2 (I’m 44 now). From what I’ve seen, read, and experienced, many autistic people have better/keener/sharper memories than do I. If I can remember something from so long ago, your child most likely will as well. I agree with Cecile…”Don’t let ‘experts’ tell you they know better than you what your child needs.”

  26. This articles hits home on one of the most painful memories for me as a mother. Leaving my son w/ his first ABA center and being pushed out the door nearly literally. I cried hysterically in a near by parking lot. I listened to my gut that there was something fundamentally wrong with a center for children that would treat me like a child. I felt them using ABA on me and I hated it and we left as soon as we could.
    In the subject of separation anxiety, my problem with my now nearly 7 year old is he can not sleep alone. He wakes up after every REM cycle looking for a parent to cozy up and support him, even when asleep. He has not developed the independency to fall asleep and remain asleep without a parent and yes, I worry about continuing into teenage years.
    We have picked our battles and have let this slide for sanity reasons. I want to respect his need for support, but it is obviously having ill effect on us. Anyone have an idea for a respectful way to teach him this skill? Because it would be easy to lock him in his room – well not easy, but fast. But, it is not respectful or kind. I am at a loss.

    • This is such a perfect question for Ibby over on her blog Tiny Grace Notes: Ask An Autistic. http://tinygracenotes.blogspot.com

      Would you mind if I send this over to her?
      I know she will get back to you with wonderful ideas.

      • That would be very nice of you – thanks!

        • Done! (I’ll let you know when I hear back)

        • Ib asked me to tell you she is going to ask her mom as she has had sleep issues her whole life and now takes melatonin, which then reminded me that Emma also did not want to sleep on her own. She still sleeps better and longer if she is sleeping with me. When we travel together she sleeps much longer than when we are home and she’s in her own room. Em also takes melatonin. She uses a spray and it has saved all of our lives.
          I’ll get back to you when Ib responds on your question which will be on her blog once she answers. I’ll send you the link.

          • I don’t know whether it’s helpful to anyone or not, but I have bad (hysterically depressed) reactions to melatonin and so I manipulate my light and dark environment to help me sleep (and I have more than insomnia — I have been diagnosed with hypernychthemeral syndrome, so that should tell you how powerful light and dark can be or treating sleep problems.)

            I just thought I’d mention it, in case someone else out there also has horrible reactions to melatonin supplements and thought there was nothing else to try.

          • Thank you for your kind suggestions. He has been taking melatonin since he was maybe 3 (now almost 7) and what started as an experiment has turned into a necessity. When we don’t give it to him, it take hours to fall asleep. WE were in a version of hell with self injury + sleep issues. Sleep took a back seat to keeping him safe. We have read a few books on the topic and know our sleep options. I am considering buying a 2nd twin bed for his room and do the fading procedure except with a bed. Which sounds bananas, maybe to someone, but that way if we fall asleep while teaching him to sleep alone, we are comfortable! Also, beds can be slowly separated. We would be at the same height (instead of him getting up to see us sititng on the floor). I have to believe we have to re-shape his expectations at bed time. We got here because he could not understand that beds are for laying down in alone (moving from the crib too early) and now he expects a human to support him. There is an anxiety component. Trying to think of solutions in a human way. Thanks again for your ideas and any more that come in.

            • It sounds like a good idea. The anxiety is very, very real. I have seen this too, which is why many methods that might work for other kids do not for a kid like mine or yours where the stress is so high. I’ll let you know if I hear from Ib or if anyone else has something that’s worked for their kid, maybe they’ll add it onto the thread. Also if and when you find something that is helping, I hope you’ll share it here as this is such a huge issue for so many of us.

    • Hi there – I don’t know if this would help, but my son is a sensory seeker, and he didn’t sleep through the night till he was 6.5 years old. My sister made him a weighted blanket to give him that feeling of cozy and seriously, it worked like a CHARM. He sleeps through the night 90% of the time now. Here’s the pattern, but my sister didn’t cut the strips, she just sewed the channels and left the edges open to put the sheets in. Easy to wash. https://www.projectlinus.org/patterns/pdf/CherylWtBlkt.pdf

      Also, my son didn’t like to fall asleep or sleep alone for the longest time. I gradually weaned us so that he can fall asleep without me, but we have kept cuddle time routine. First I sat in the bed on the opposite end. Then in a chair (with my ipad doing whatever). That got him used to me not being in the bed as he fell asleep. Once he was comfortable with that, we started a bedtime routine that he finds comfortable. We play tickles (it relaxes him), then tuck in, then I lay next to him and sing a song between 4-6 times. Usually 4, with maybe 2 “one more time” requests. He is able to say goodnight mom and fall asleep on his own after that. Sometimes they just need to KNOW you’re there, or close – this worked for both of us, and we still have the loving time we both need without the long, drawn out falling asleep time. It still takes about 30 minutes, but it’s better than the 2 hours it used to be.

  27. I’m so grateful to have your blog that I’m in tears. My daughter is 2 and a half and we are still in the process of getting the official diagnosis. I’m trying to learn as much as I can to help accommodate her needs. She has significant separation anxiety and until now, I’ve been a stay at home mom but in a couple of months I will be doing a part time internship and will be needing to have her in a child care situation. I want to support her and not force her into things. So, what I see here as the take away is to work on a transition by spending time with her in the same setting and gradually moving off? I also hope someone can respond to be about ABA. We are just getting started with therapy. Literally tomorrow is her first speech appointment. I’ve read that ABA is the “gold standard.” Is that not the case? My daughter has gone from speaking about 150 words down to about 20. I would love to be able to receive her words whether they come from her mouth or the written word. What kind of approach is taken to teach written language? Perhaps she’s too young just yet for that, but I want to keep it in mind. I apologize for my ignorance. I want to do the absolute best for my daughter and I’m trying to learn what that is. For now, I just love her and be patient with her.

  28. usethebrainsgodgiveyou

    Another very similar story to Emmas. May this generation of autistics rise up!

    Lead in: 12,000 hours of ABA, 2600 hours of speech, 1700 hours of OT, and “experts concluded that Ethan could not learn.” https://www.youtube.com/watch?v=evjbx9_RiMY I just had to beg you to watch it.

Leave a Comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s