Autism: Going to Bed Alone

Autism: Going to Bed Alone

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I recently heard somewhere at a training I went to that nearly 80% of individuals with Autism struggle with sleep in some capacity. I feel the parents of my client’s pain when the walk into my office looking like they only got a few hours of sleep the night before, as likely I also only got that much in my home! One common complaint I often hear is the child will not sleep in his/her own bed. I smile and nod, knowing all too well how the scenario looks each evening.

It is 8:00, the hour you dread because you know the fight is coming, and yet your body aches and screams for it because it is exhausted and needs sleep. You get your child ready for bed… teeth are brushed, pajamas are on, story is read. Then the whining and crying begins, all because they do not want to be alone, or they cannot go to sleep without touching some other person. At 11:00 you and the child are still awake, it feels like a nightmare, and you finally give in and just snuggle up to your child for some attempt at a few good hours of sleep, only to be kicked throughout the night and woken at 5:00 to the happy smile of your child ready for the bright day ahead.

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Yep, this is our story too. There are some nights that are successful for our son to go to bed alone. But this is a battle that even at 8 years old we still have to fight. Here are some thoughts we have learned over the years and some that clients have tried with success!

  • Ask your child’s doctor about using something to help your child fall asleep, such as Melatonin. This is a simple, inexpensive over the counter natural product you can find at any pharmacy.
  • Sleep with the bedroom doors open throughout the house until your child relaxes enough to sleep through the night.
  • Try creating a “brave shelf” in the bedroom. Put things on it that help give confidence to your child, such as superheroes, awards, treats, favorite toys, pictures, etc.
  • Let your child have toys, blankets, books, or anything else to help keep him/her in bed. If he/she ends up playing for a while, consider this better to the alternative! If you need to put the child to bed earlier because of the playing, then do so.Are-your-kids-going-to-bed-too-late
  • Practice going to bed throughout the day. Use a social story, pictures, etc. to help the child understand what is going to happen.
  • If your child is currently sleeping in your bed, take baby steps back to his/her bed. It might look something like sleeping on the floor for a few nights, then moving into the hallway, then further down the hallway, and finally into the bedroom.
  • If your child is struggling because he/she needs to touch someone, try having him/her sleep in a small sleeping bag under a quilt. This will give the impression of feeling secure.
  • Give rewards for any accomplishment, but be careful to not overdo the awards. For example, if your child sleeps all night in the bedroom alone, give a reward such as a treat or an extra privilege. But then the expectation is now set higher, so to earn another reward he/she might need to sleep a whole week alone.
  • Find appropriate times to work on this skill. Working on this when school begins might not be the best option. Working on it during the summer or school break is a better option.
  • Try having a pet sleep with him/her.pet
  • Have your child sleep with a weighted blanket; this has proven very successful. In the summer months, use a fan to help with staying cool.
  • Some families have had success with having white noise in the room. This can be a fan, noise machines (you can find these reasonably priced on Amazon), or music.

Going to bed alone is tough on little guys, especially with Autism. But I encourage you to fight the battle and stay strong. Find the supports you need and pounce on any encouragement you find!

Jen Edwards, LMHCA

jen@BeautifulAutism.com

425-387-3872

Being an Advocate for Autism

 

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Being an Advocate

                Advocate: to speak or write in favor of; support or urge by argument; recommend publicly (taken from dictionary.com).  Or perhaps my definition: See parenting 101.

                It can be a challenge to be an advocate for someone, especially if they are your child and you are emotionally involved.  But this is an essential part of parenting; particularly for a special needs child.  You advocate at school, clubs, social settings, church, bus, etc.  And it can be emotionally draining and time consuming; but you just do it.

How to be an Advocate

                The biggest part of being an advocate for your child is to truly know and understand what your child needs.  This may take time and effort on your part doing research, talking to doctors and therapists, and knowing how the classroom functions on a daily basis.  However, it does not mean you have to be a professional in Autism; you just need to be a professional in the concern of your child.

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                Here are some tips for advocating:

·         Be sensitive to the situation- sometimes people just do not understand Autism.

·         Take a stand for what you believe is important, but try not to die on hills not worth fighting on.

·         If needed, get a professional advocate to help you.  Parents hire these individuals to help with school needs.

·         Listen to others; try not to always be defensive.  Generally people want to help, but often compromises will need to be made.

·         Go in knowing what you are talking about- do your research and be informed!

Challenges of Advocating

                Today I encountered an organization unsure if they can take my son into their program because of his Autism.  I was floored!  My heart sunk!  Really? I thought… This is crazy! He is high-functioning and does not need direct supervision all the time!  I decided to not jump on the defensive quite yet; I will wait to hear back from them and then if needed, get into my you messed with the wrong mom mode. 

                So, do I go in and yell and make a scene?  Well, after doing that, would you want your kid going somewhere that was now hostile and uncomfortable?  No, I will not make a scene.  I will let them explain their decision and reasoning and if needed, I will counteract.  Is this something worth getting into a huge battle over?  Probably not; I have other options.  However, this may be an opportunity to make a difference.  My biggest challenge is not acting emotional; I need a clear head with a calm attitude.  And I admit- sometimes I turn these things over to my husband (he is much more intimidating!). 

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                Advocating can be difficult.  You want what is best for your child, but you often have to make compromises.  We have generally had good experiences with advocating for our son, but there have been times when we have needed to take a stand.  It can be intimidating at first, but I suppose after a while you just get use to it.  Your skin becomes think, so to say, and you probably do it more than you realize because it is such a big part of your life.

Wrapping it up

                I am curious to hear some of your stories on advocating.  As a parent you never cease to advocate for your child, even when they are grown up.  Like I stated at the beginning, it is parenting 101; it is ingrained in us the moment we become parents. 

                Take your stand; do it wisely.  Be informed and be calm.  Ask others for advice and wisdom.  Be the best parent you can be!

Resources

I did a simple google search on “advocating for child with Autism” and came up with some great resources.  These are listed below.  They are filled with great information and ideas.

http://www.autismspeaks.org/family-services/community-connections/advocacy-can-make-all-difference

http://www.edweek.org/ew/articles/2012/12/01/kappan_foster.html

http://www.autismsupportnetwork.com/news/how-become-advocate-your-child-autism-302201945

Explaining Autism to Others

Explaining Autism to Others

                Do you get tired of explaining about your child’s Autism to people?  I get rather weary of it.  It just comes naturally to me now… you go into a new situation, you explain to the person in charge your son has Autism, you give them a few pointers, they usually look at you with a smile and a nod of their head because they do not know what else to do, but deep down you know they are either freaking out or thinking you need to just relax and back-off.

                Back-off.  Those words haunt me today; everyday.  I put my son in swim lessons- it is his first time.  explaining6As we drive there I think through what I need to tell the instructor.  We get there and I talk with her and get the smile, nod, and blank look.  I try giving a few pointers a few times, and then it hits me… why?  Is it necessary that I give pointers?  Is it necessary that I explain beforehand that he has Autism?

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Personal Thoughts vs. Reality

                Yes, it usually is important that I explain he has Autism.  Though I fully admit I want to explain it to defend his actions- that way people do not think he is a bad kid that is not disciplined and is hyperactive and disobedient.  Is that selfish?  I mean, after all, it does reflect back to me.  I always tell myself no, ultimately it is best for him and people generally get pretty upset if I purposefully neglect to explain my son to them beforehand.

                But the question still remains, should I give pointers and suggestions?  Often times I find people who can think of something intelligent to say ask me for ideas and how to accommodate him.  This always makes me feel relaxed and I feel like they go the extra measure to help him and make sure it is successful for him.  Maybe sometimes the ones who do not ask questions need to realize for themselves it is ok to ask questions.  Are they scared to ask?  Maybe it seems rude to ask?  Do they lack the knowledge of Autism and simply have no idea what to do and say?

                Maybe it is like seeing someone for the first time after they have lost a spouse or loved one.  What do you say to them?  Nothing will make them feel better, and it is always that awkward moment.  So if I say to someone, “My son has Autism” what should their response be?  Would it be rude to say, “Sorry he has Autism” or “Oh what a shame.”  What is it I want to hear?  I certainly do not want pity.  Is this how someone feels after a loved one has passed away?  What do they want to hear?

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                So in reality, I suppose people want to know ahead of time that my son has Autism so they know he has sensory issues and is not simply being defiant (though at times I know he is… like this morning when his swim instructor told him to blow bubbles in the water and he insisted he did not want to blow bubbles but was ready to learn how to dive).  (I am sitting here laughing right now… why do I always laugh when I think about my son being defiant?  Maybe this is not healthy…)  Yes, people want to know.  Should I offer suggestions?  Well, I suppose I need to think if it is relevant and necessary.  Is it necessary for his swim instructor?  Maybe not as much.  Would it be for his school teacher?  I would think so.

Emotions

                It is draining explaining Autism so often, nearly every day.  My husband and I believe we can use our son’s Autism for God’s glory and to help others understand Autism- this is why I do what I do.  But emotionally it can get so tiring.

                I dread it when people say to me, “Oh he seems fine” or “Oh he is high functioning”… maybe they do not know what else to say.  And really, what is “high functioning?”  Perhaps another post on my blog at a later time.  I think it is all in the scope of the beholder, but like I said, we will cross that another time.

                Do you ever find yourself holding back on doing things such as outings because you simply do not feel like explaining Autism today?  Yes, I admit I feel this way often.  I do not want to go to the park because I get the strange looks from other moms and kids, and I get the “your kid is throwing rocks at my kid” and then I have to explain.  I do not feel like going anywhere that requires standing in line because he gets hyperactive and asks millions of questions, generating more curious looks and annoyed people who want him to stand still and shut up.

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                There are days I simply cringe at the word Autism.  I love my son; I love everything about him and who he is.  But it is emotionally draining at times.  People simply are not well educated on Autism and thus they just do not understand.  I do not blame them for their lack of knowledge on Autism.  As a society we are becoming more aware of Autism and perhaps my son’s generation will understand as they grow up and become adults what Autism is and how to work with those afflicted with it.

                But for now I cringe and smile and take my deep breaths.  I suppose soon we will need to teach and explain to my son about his Autism, but not teach him to use it as an excuse but rather as a tool.  Good luck to us!  And tomorrow I think I will sit back and say nothing unless the swim instructor asks for help.  I will be one of the other moms with my nose in a book, every now and then peering over to see what he is doing.  But the only difference is I will have gentle tears in my eyes when he accomplishes something, such as blowing those darn bubbles, because this is so huge for him!  Any small accomplishment is critical for us; we treasure them and tell our whole family about it.  My facebook status this evening was about my son trying (after much persuasion) sloppy joes for dinner, and he actually liked it!  Grand for us, boring for others, I know.  Accomplishment… such a big word for such a small kid.

Final Thoughts

                I have no final thoughts except I wish people were more educated about Autism.  Wouldn’t it be wonderful to drop him off somewhere and simply say, “He has Autism” and to actually have someone respond back, “No problem, I know how to work with Autism.”  Maybe someday.

                Until then, I educate and I am the advocate for my son and for anyone else out there in my position.  Autism.  It is my life.  It is my son’s life.  It is my husband’s life.  But we will not allow it to control us, we will dominate it.  Because it is our son, and we love him!

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