Autism Occurs Within the Context of a Family

Autism Occurs Within the Context of a Family

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I went to a conference a few weeks ago where Dr. Felice Orlich stated something that really caught my attention: Autism occurs within the context of a family. How true these words are! Yes, my son is diagnosed with Autism, but honestly at times I want to just put a huge diagnosis sticker on my whole family that states in big huge letters AUTISM. In our own ways, we are each effected.  And together we go through the ups and downs of Autism, as a family unit.

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I have spoken before about the impact the diagnosis of Autism had on myself and my husband. And it continues even years later to impact us emotionally. But when I heard this statement about how it occurs within the context of a family, I really got to thinking about how our family changed, and how we are different than the typical family.

Here are some things that look different for our family, simply based on the fact that my son has Autism and we make adjustments according to his needs:

  • Going out to eat is earlier before the loud crowds get there
  • Vacations tend to be places where everything is at one place, such as a cruise or resort
  • Pre-boarding the airplane before anxiety gets too high
  • Going to sensory-friendly movie showings at movie theaters
  • Doing errands and other things first in the morning before behavior gets difficult
  • Going to bed shortly after our son falls asleep as we never know what kind of night our son will have, or how much sleep we will get
  • Rarely having free evenings, as therapies and appointments keep us pretty busy
  • Arriving early to anything so there is time to process before it begins
  • Often leaving early from things because the wiggles just become too much

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We have just accepted it for what it is. Our lives have changed and they do look a bit different from other families and that is ok. We make adjustments when needed and our son always has to come first. So yes, our son may actually have the Autism diagnosis, but in reality that diagnosis makes an impact within the entire family dynamic.

I often watch the siblings within the family of a child with Autism closely as well. So much of their life is impacted because of their brother or sister with Autism. It is always interesting listening to their stories and trying to understand their needs. If you have a child in this role, be sure to give them the support they need, but also the love they need as well, as it looks vastly different from the child diagnosed with Autism.

I always say I would never change my son! He is perfect the way he is! I give him the tools he needs to help him succeed in life. But I cannot change who he is. The quicker I can understand that, and the quicker my family can understand that, the better our family is for coping with the Autism and serving our son with his needs.

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Jen Edwards

Counselor and Behavior Therapist

jen@BeautifulAutism.com

When to Tell Your Child He/She has Autism

When to Tell Your Child He/She has Autism

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We all have times in our lives when we face the decision of when to tell our children important or challenging things. We dread those discussions at times. The stress of it can eat at us and drain our energy. As parents we might argue about when to talk to our children about these things, causing stress on our marriage. These conversations range from talking to your child about sex to talking to your child about a diagnosis he/she has.

Our son was three years old when he was diagnosed with Autism, so obviously we were not in a huge hurry to explain to him about the diagnosis of Autism that he had. However as the years crept on, we realized at some point we were going to need to explain this to him, especially once he began realizing things about himself he did not perceive as normal. My husband and I began having conversations around when and how to tell him, as well as how do we explain it to him in a way that he can explain it to his peers to help them understand him. At first when we began discussing it the conversations did not seem that difficult, but as we got more into the details of it, the conversations got more intense and stressful.

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Eventually we got to the point where we thought our son was ready and we began to slowly introduce to him Autism. We did not tell him right away he had Autism, we wanted to see if he could begin to connect the dots himself. In time he began to, and though he is still figuring out what exactly Autism is, as well as ADHD, he is beginning to understand himself, how he interacts with others, how he is perceived by others, and he needs to function to work in the world.

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Here are some thoughts to consider when thinking about this:

  • Is my child mature enough to begin to understand the concepts of the diagnosis?
  • In what ways will this help and hinder my child?
  • Will this be able to help others in our family or others that interact with my child?
  • Who will tell my child about the diagnosis?
  • How will we tell my child about the diagnosis?
  • Am I putting my child’s needs first when thinking about this decision? Or am I allowing my own thoughts to come first?

I hear a lot of people come up with some reasonable arguments for not telling their child about the diagnosis. Some people are scared about what their child might say or how they might react. Some are afraid it will put a label on their child and others are afraid their child will use it as an excuse for poor behavior.

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Keep in mind eventually your child will likely find out about their diagnosis from someone, someway. When we want our kids to always be open and honest with us, we have to also consider that we need to demonstrate how to do this. True we need to take into a lot of considerations, just as the questions above can be used as a guideline for this, but children want the same courtesy given to them as we want from them.

When getting ready to talk to your child about the diagnosis, be sure both parents are on the same page and timing for the talk. Also, begin with just having simple conversations about what Autism is; do not begin with the bomb of, “You have Autism.” Allow your child to try and realize, through your help, they have Autism.

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Remember, these decisions take time and lots of thought. Find others that support you to help you through it. This might be your parents, therapists, doctors, or close friends. Until that time does come, enjoy your child for who he/she is and blessings come with that. Love your child, treasure the memories, enjoy the moments.

Jen Edwards

www.beautifulautism.com

jen@beautifulautism.com

Autism: I Just Want a Normal Child

Autism: I just want a normal kid!

Parents of Children with Autism Stages of Grief
I hear this so often in my line of work, “I just want a normal kid!” In a way it breaks my heart; but then again I get it. I can relate and have even said those words in my head hundreds of times. I just want a normal kid…
A saying I often tell parents, and something that finally resonated with me and truthfully allowed me to look at it from a whole new way was God does not call the qualified, He qualifies the called. Oh how that took so long to fully sink in and surrender to. And how I still at times find myself falling down and saying that “normal” word.
I find myself wanting “normal” when I am stressed and frustrated at my child; when I think he is not acting as he should be acting. I find myself feeling embarrassed at his actions or frustrated that I cannot control the overall situation. But then when I sit back and think about it, I realize I am acting rather selfishly, as I am only considering my own thoughts and feelings. My son is who he is, and I need to be thankful for that and work to meet his needs while still keeping him accountable to the given expectations that life holds.

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There are times I grieve for my son and his diagnosis of Autism. I want him to be able to experience all that life holds and the many treasures that life experiences can allow for. However I also realize that he gets the pleasure of experiencing things that I cannot because of his diagnosis. He has an amazing mind and imagination that I am not able to understanding and comprehend; he will say to me how sad it is that I cannot think like him. We are all blessed with our own gifts in life; he has his and I have mine.

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What can parents do who feel like they just want a normal child?
1) Find the “normal” within your child and LOVE that normal! That is who your child is, be in love with that and treasure each waking moment while you can.
2) Pray and ask God for wisdom and strength to love your child for who they are. As parents we all have dreams about how our children will be. We want our boys to be football players and our girls to be a princess. When our dreams are shattered by an Autism diagnosis (or any other diagnosis), we are devastated. Ask God to help you understand and be changed for the new normal.
3) Find others who can help you and encourage you daily. These might be prayer partners, family members, friends, etc. It is ok to share your thoughts and feelings to those around you who will listen to you!
4) Tell your child that you love them. If you are able to hug and kiss them, do it. If not, blow them a kiss or do it while they are sleeping.
Again, be encouraged by your child, not discouraged. And if you are feeling discouraged, find help. Having a child with special needs is a lot to deal with on a daily basis. It never hurts to seek out professional help with a therapist or ask your doctor for some advice. Most importantly, qualify yourself to be the best you can be for your child!

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Jen Edwards, MA LMHCA

jen@beautifulautism.com

http://www.beautifulautism.com

Autism: Tis the Season for Troubling Beahvior

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Autism: Tis the Season for Troubling Behavior
The odds were totally against my son yesterday morning when he had that awful, no good, very bad day. Between us rearranging bedrooms, his stuffy nose, waking up at 3:30 in the morning, and then to top it off the house is in disarray due to decorating for Christmas. It was a tough day that ended with all feeling exhausted and not very festive for the time of year.
This time of the year is often rough on children with Autism. We suddenly change the look of our homes and rearrange things and then we get extra busy with our schedules. And to top it off, we eat different things that we do not normally eat. There are a lot of changes in a short amount of time, and just as suddenly as it came, it goes away.

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Here are some tips to help your child during this time of the year:
1) Give your child warning before putting up decorations; the best is a few days before. If your child struggles with verbal communication, consider taking a picture after you decorate so next year you can show your child the picture to help him/her prepare.
2) Let your child help with the decorations. You may even consider putting a few decorations in his/her bedroom. (Be careful to not overdue it).

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3) It might be helpful to decorate in stages to help your child slowly adjust. Maybe one day you decorate the tree, then another day lights, etc.

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4) Keep your house as neat and tidy as you can while putting up the decorations. Extra boxes and messes around the house can add frustration to your child.
5) When you get ready to take down the decorations, give your child plenty of warning, and consider taking them down slowly.

Above all, be sensitive to your child’s needs. Just remember there is a lot to process this time of the year for your child, just like there is for you. Communicate with your child about his/her feelings and emotions during this time of the year. If your child appears distracted or upset about the decorations, consider finding a quiet spot for your child that is left alone from decorations to give your child a spot to go to that is “safe” from disruption.

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Enjoy your holidays and treasure this special time with your family!

Jen Edwards, MA LMHCA
jen@beautifulautism.com
http://www.beautifulautism.com

Sensory Friendly Films at AMC theaters

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Taking my son to the theater is an awful experience, which is sad for us since we very much enjoy watching movies. It is simply too loud, dark, and overwhelming.

Here is a link for AMC theaters and a program they offer for sensory friendly movies at their theaters. https://www.amctheatres.com/programs/sensory-friendly-films

They are beginning to offer not just kid-friendly movies, but even movies for adults, which is great for all you adults that want to see more grown up movies, such as James Bond 007! They are even doing Star Wars in December!

So enjoy going to the movies! Get your popcorn, drink, and treat and relax with your family!!

Jen Edwards

http://www.beautifulautism.com

jen@beautifulautism.com

Autism and School Conferences: 5 Things for Teachers to Remember

Autism and School Conferences: 5 Things for Teachers to Remember

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We dread conference time. As parents of a child with Autism, going to conferences and IEP meetings is just not a happy experience for us. The school staff is generally great and a blessing to our son and his needs. But unlike so many families, we do not get to hear glowing remarks and we often leave feeling once again defeated.
As a teacher, I tried hard to send positive emails to the families of students with disabilities. This helped with a positive relationship and it also encouraged the parents as well as the students. Thus I have put together some simple things teachers can do to help these families during conference time.
1) Begin with sending an email out ahead of time to the parents with some positives, but also, if needed, some things that you will be going over during the conference so parents can begin preparing themselves.

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2) Keep in mind these parents have a lot on their plate already and are dealing with special circumstances with their child. There is no need to tell and explain all the negative things unless they are truly necessary. And if you question what is necessary to talk about, then speak with the special education teacher in your building or your principal.
3) Find and give any and all positive remarks. Even if it is small things like the student was able to sit through circle time without rolling around on the floor. These are big things for families. Keep a list if that helps to remind you of things. And use your paras to help with this too.
4) Assure the parents that you will continue to do all you can to work with their child. Assure them you are not giving up on their child. Though as teachers we may not say we are giving up, it can often feel this way to parents when they hear so many negative things. Keep smiling and show your love and care.

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5) Follow up afterwards a couple days later with an email or note home just to check in with parents. If appropriate, give your thoughts on how the conference went. But more importantly, make the parents feel appreciated.
Parents always want what is best for their child. They want to help their child succeed in school and be supportive of their child. However, if they walk away feeling defeated, this will often transfer onto the child. Keep a strong and positive communication with these families. They will greatly appreciate it!
Teachers are amazing and often do such wonderful work! They work endless hours and do their best to meet each child’s individual need. Their work is hard and often under-appreciated. But anyone who works day in and out to do whatever they can for students with special needs is golden and your work does not go unnoticed by those who care and need it. Bless all of you and thank you for your hard work and dedication!

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Jen Edwards, MA Counselor and Behavior Therapist
jen@BeautifulAutism.com
425-387-3872

Autism: Understanding Your Child’s IEP

Autism: Understanding Your Child’s IEP

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Each year we all go to that annual meeting for our child’s individualized education plan, or IEP. We sit down and there are anywhere from 3 to 7 other people there, all involved with your child’s education. They start talking about how the year went and all the different assessments they did with your child with a lot of acronyms and long names. Pretty soon your head is spinning, you are feeling disheartened with all the negative things, and the paperwork is exasperating.
I have a background in education and even I feel like this every year. About 20 minutes into the meeting all I want to do is crawl under the table and hide. It takes all my strength to usually not cry and get irritated at things. After over an hour long meeting, I leave feeling exhausted and frustrated. But after reflection, I realize it is not about my feelings, but about my son’s needs.

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So how does one really understand all there is in the IEP? First, do not be afraid to ask questions to get clarification. Remember that a lot of it is fancy wording put forth by the department of education. Focus on the goals that are written for your child. Try to get an understanding of what your child is being offered and what your child needs. This will help you to look at the positive side of your child’s needs.
Remember you are your child’s best advocate. Speak up if you feel there is something missing that you feel your child needs. Even if you are unsure if your child needs it, still ask for it; it never hurts to look into extra services. But perhaps the greatest piece of advice I can give it this: listen to what the school professionals are telling you. Though we want our children to be as “typical” as possible, we also should listen to what advice and services the school thinks is best for your child. They often have insights and ideas that we as parents do not have the training for. At times it may be hard to accept what the school decides, but take it all in stride and listen to what their thoughts are.

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Finally, ask other parents to help you understand the IEP if you are still confused. Use any resources you have and can think of!
But if you find yourself still at a lost or stuck, feel free to ask me. Send me an email or give me a call!
Jen Edwards
http://www.beautifulautism.com
jen@beautifulautism.com
425-387-3872

Autism: Building Resiliency

Autism and Building Resiliency

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Resiliency. We know this to be the act of overcoming something, such as in this case of challenges or adversity. With Autism resiliency is a daily, if not at times an hourly action. As parents we watch our kiddos with Autism struggle to overcome situations all the time, all the while crying for them, praying for them, and hoping they will gain confidence through the use of their resiliency skills.
There is that common saying that kids are resilient… apparently those people have yet to work much with kids on the Autism spectrum! My husband and I watch our son struggle all the time with resiliency. Change is difficult for him; just the idea of change is enough to make his anxiety unbearable to work with. His face gets red, his eyes dark and mysterious.

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We have to teach our children resiliency, it is not something that comes naturally. With children diagnosed with Autism, we have an extra challenge of teaching them this concept and life skill. And we need to demonstrate resiliency continually as to show our children what this looks like. This is not easy, as so often I want to simply scream and yell, slam the door, or shrug my shoulders and say oh well.

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Always encourage your child with resiliency. Do not be afraid to use the word, even with young children. One of the best ways you can encourage your child is to explain what you would do in that situation. For example, when my son is trying to put something together but is struggling, I might suggest to him, “When I am struggling with that, I do it this way. That is how I use resiliency.” Then when you see your child using resiliency skills, be sure to comment positively and praise on this well-deserved triumph.
Frustration will come easy, particularly with kids diagnosed with Autism. I caution on knowing the difference between encouraging and forcing. By this I mean you do not want to push and push, or force, your child with working through something to the point where it gets into a meltdown mode or arguments. Always help them when and if they need help.

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As parents coping with the effects of Autism, we all know the resiliency we have to maintain daily. We push through the meltdowns, respond to the emails from school that usually are not very encouraging, clean up messes, and take our child to therapy a few times a week. At times we question our ability to parent, but we somehow press forward. Some nights we cry ourselves to sleep, wondering how we will make it through the next day. Sometimes our resiliency comes out through prayer, deep breaths, or extra work.
But hopefully we can all agree that in the end we love and adore our child. There is nothing that I would change about my son, Autism and all! The determination and resiliency that I have gained from working with him has been life-changing. After all, he is the reason I do my job, write this blog, and wake up every morning before the sun comes up.

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Jen Edwards
jen@beautifulautism.com
http://www.beautifulautism.com

Autism: Obtaining all the Resources

Autism and Obtaining all the Resources

I will just be blunt and say it: obtaining all the resources and help a family needs for a child with Autism is exhausting. It is a daily struggle and battle, a lifetime burden. And what it almost always comes down to is either cost or the services are simply not available.

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There is the expression take it one day at a time or a moment at a time. Certainly one can do that, especially when the big picture seems rather daunting. But usually when someone tells me that, I want to just give them a dirty look and roll my eyes because there are a lot of moments I need to take at a time.

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But we all know that we cannot give up. We were given this precious gift and we need to treasure it and advocate for it. As we grow and learn how to handle these situations, we become stronger and more equipped.
My suggestion is figure out what the most important resource is and work on that first. For example, for a school age child, focus on getting the resources they need at school first. Focus on the IEP and the services your child is allotted from that. Advocate for more or less if you feel that is necessary. If you need help with this, there are family advocate services all over that will help for little or no cost or have your child’s therapist help.

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The idea here is try to focus on one battle at a time, if possible. It can be daunting and frustrating; so often you just want to give up or walk away from it. Find other parents and network with them. Ask your child’s doctor or therapist for resources.
Another tip, keep everything your child’s doctors, therapists, etc. give you, especially if it has the diagnosis written on it. This can help get services started quicker when you begin something new and sometimes the paperwork can have resources on them.

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Keep strong parents and share your resources with others!
Jen Edwards
jen@beautifulautism.com
http://www.beautifulautism.com

Autism: Arranging the Bedrom

Autism: Arranging the Bedroom

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We just recently moved and I have been setting up my son’s room. A lot of thought went into how to set up his room, as we are very tight for space currently and his room is arranged much differently than before. But this got me thinking on how this will impact him, and after I finished his room he does not seem to spend much time in it.
When arranging your child’s bedroom, you need to think simple and calming. Keep in mind that your child’s brain processes very differently and can get very over stimulated; this makes it difficult to get calm and sleep well if the bedroom is not calming.
Things to put in the room include a comfortable bed, appropriate low level lighting, books, soft stuffed animals, blankets and pillows (and of course clothes). Some examples of low level lighting might include a lamp or lava lamps. A soft chair or something like a bean bag chair might be a nice touch near the books to snuggle up in while reading.

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Avoid putting in toys, colorful lighting, hard items, or anything that can cause harm to your child or even you (if your child has a tendency to throw things when upset). Again, you want this room to be a calming experience for your child. The items listed here can cause overstimulation and make it difficult for sleeping and calming.
If possible, have the toys in a separate room other than a bedroom. This allows separation of playing and sleeping. However, if this is not possible, as for us it is not at the moment, attempt to put the room in two sections. Have the sleeping part in one half of the room and the playing in the other half. Try to keep the lighting low and do not put out too many toys. You may have to rotate toys to reduce the overwhelming amount.

This picture demonstrates the idea of separating the play area from the sleeping area if it is needed to share the same space.

This picture demonstrates the idea of separating the play area from the sleeping area if it is needed to share the same space.

It is easy to place your child in his/her bedroom when meltdowns or discipline occurs. However, try to avoid this as you want to keep the bedroom a calming place. Find another place to allow for these happenings. This place should be a safe place without hard things that will cause damage if thrown.

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These ideas are difficult to implement at times, but can make such a wonderful difference. I would love to hear your thoughts or comments!
Jen Edwards
jen@beautifulautism.com