Experts: I am the Best Expert on my Child; Teachers and Therapists are Experts for Their Field

Experts: I am the Best Expert on my Child; Teachers and Therapists are Experts for Their Field

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As parents we know our child best. We know their needs, wants, and desires. We see them through their best times and their worst times for more than eighteen years, then we send them on their way to college or work… usually. But in the meantime, we raise them the best way we know how. And we often say we know our child best because we are their parents… we are the experts.

We hear advice constantly from teachers and many of us hear advice from therapists on ways to help our child. At times we take their advice, many times we seek their advice and wisdom, and at times we look at them and think to ourselves, really? But I want to encourage all you parents out there with this thought: You are the best expert on your child and the teacher/therapists are the experts in their field.

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I look at my son with his Autism diagnosis. There have been times when therapist or doctors have recommended things to us and quite frankly my thoughts were there is no way that is going to work for our family. Something people outside of our family needs to remember is that Autism, like many other diagnosis, occurs within a family context, not just with my son (See Autism Occurs Within the Context of a Family). Changing something for my son means changing something for the family. I remind myself the person who just gave that recommendation is the expert in his or her field of study, but I am the expert on my son and the needs of our family.

Does this mean I turn down advice from people, or never go looking for outside help? Goodness no! That would go against all I believe in. It truly takes a village to raise any child, especially one with special needs! But I am always having to remind myself that I am the expert on my child. I often feel down or frustrated that I cannot seem to be doing right by my son. Or I get weary when things just are not going well. Or my particular favorite, when everyone around me wants to put in their advice on raising a child with special needs. But I am the expert on my child, not the speech therapist, not the doctor, not the teacher, not the counselor. I know my child best, I know his needs, I know his wants, I know his cries.

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I have seen many families feel pressured into doing things and changing their entire way of life because teachers, therapists, or doctors have told them to, and the parents did not feel it was the best choice for their family. I plead with you parents to think hard about your choices and ask if this is the best choice for your child. Find out if other families have done that change and if has helped them as well. You are the expert on your child!

So as you sit at the next IEP meeting for your child, remember that it is you that is the expert there. You are the best advocate for your child. Everyone else there is the expert in their field. Speak up for what your child needs. If you get push back, remember there is a reason behind it, which might be reasonable or not. But if you feel that your child needs it, continue to advocate for it. You only have one shot at raising your kid, might as well be the best expert at it now!

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Autism Spectrum Disorder Is Like a Train

Autism Spectrum Disorder Is Like a Train

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Autism Spectrum Disorder is like a train… it is on a straight track and it does not move off the track! There is one way to do things and that is it, no veering off the track. Whereas neurotypically developing individuals are more like cars, they can go any direction at any time and thus have flexibility.

As parents, teachers, therapists, etc., we might call this “train-like” function a challenge. And it generally irritates the heck out of us. We may also refer to it as “black and white” or “concrete”.

I love this analogy though, as it really puts things into perspective. I heard it from a young lady, about twelve years old, a sibling of a boy with Autism. She explained how individuals with Autism tend to just plow straight ahead, no matter what is in their way, leaving anything behind, completely focused on themselves. They have the right of way and can overpower anything and anyone. And then when something bad does happen, it is like an awful train crash, being anywhere from minor to devastating.

I think this really allows us to understand how they process in light of everyone around them. So many people with Autism want to understand the world, they want to relate and socialize, but it is a struggle. So as those who love these individuals, we support them by sometimes allowing them to go full speed ahead, blocking all those around them and plowing their way through life. But at times we make them slow down and find those places where they have to veer off and make a change, because change can be good and helpful. We teach them to process and think differently to help them succeed in this world. But we continue to love and support them.

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So help slow that train down, and be the car that rides alongside them, but challenges them at times too! Find the spots when they need to make a turn and support them through it. Sometimes, jump on the train with them and go for that crazy, wild ride! Understand from their vantage point, you might learn a thing or two yourself!

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Jen Edwards

Counselor and Behavior Therapist

jen@BeautifulAutism.com

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

Using Autism to be a Blessing to Others

Using Autism to be a Blessing to Others

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Yesterday I read an article that was about accepting people with a disability and it got me thinking about things. Personally I have always been able to accept my son’s diagnosis of Autism, though at times I struggle with the grief of it. But I have always wanted to use my son’s disability to bless others. Is this why my son has Autism, so that through it we can bless others and show how good can come from it? I believe so, and I believe that he is learning how to bless others as well through his Autism. Maybe it does not make sense to you. Maybe it gets you thinking about things. But for us, this is our calling and gift.

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I am not going to sit here and make you believe that I always hold this optimist point of view. Even yesterday morning as my son was having a rough morning and refused to go to school I was near tears as I literally dragged him from the car into the school. Afterwards as I left the building with him screaming and calling for me, I could feel my body tense and my blood pressure elevated. My arms hurt from holding his 85 pound body and my heart ached to just sit and hold him while watching some funny movie. I wanted to scream and curse at the Autism behaviors; it needed to go away and I wanted a “normal” child.
But really that was not fair of me. My son is who he is and I love him for it. He has the diagnosis of Autism and I cannot let that define him. We have good days and bad days; it is what it is.

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How can I be a blessing to others? I remember one evening we had some friends over to dinner. They are good friends of ours now, but they asked us a lot of questions about our son and about Autism in general. We were, and are always, very open to answering any questions. After they left I remember feeling numb with “Autism talk”. But later on they expressed how informative the evening had been for them and how they felt more informed about Autism. I had blessed them by telling them truths about Autism and about our son.
How else can we bless people about Autism? Teach others about Autism, be comfortable around others, allow others to spend time with individuals with Autism, and speak positively about Autism. But I challenge you to be real with others about Autism, share the challenges along with the good things. And yes, there are good things!

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I fully believe everything works for a reason and purpose. I may not have known what I was doing when my son was initially diagnosed with Autism, but I am becoming more equipped each and every day. So for now we deal with my son’s issues as they come and in the meantime we use it all as a blessing to others in any way we can.
Jen Edwards, MA LMHCA
jen@beautifulautism.com
http://www.beautifulautism.com

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: Small Victories

Autism and Small Victories

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I was feeling rather defeated the other day after some negative news on resources for my son and he had a rough day. It was one of those days when I had the depressing feelings of am I a good enough mother, do I have the strength to do this? I know these dark thoughts penetrate the worst feelings I can have.

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After reflecting on this not-so-good day, I realized all the small victories we had that day. My son ate some healthy food (a constant battle), he entertained himself playing in his room, and attempted to pick blackberries with me. So I smiled and said a small prayer of thanks for the small victories that we had.

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What small victories do you get? Maybe it is a hug or eye contact, or maybe you were able to hide vegetables in your child’s meal and it was unknown. How do you hold onto those victories? I occasionally put our victories on Facebook for our family and friends to see and enjoy with us. Usually they are often in the form of funny quotes from my son, as these make us stop and laugh, a small victory we treasure. Perhaps you write things down in a journal or book of some sort.
It often seems as if we have more setbacks than victories. The setbacks causes stress and tension. Use the victories to relieve the stress and tension. Savor in these moments and treasure them. Remind your child (without overdoing it) how happy these victorious moments make you.

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So for now, press on and stay calm dear friends! Victories do come, often in small doses and at times even not recognizable. But nonetheless a blessing!
Jen Edwards
jen@beautifulautism.com
http://www.beautifulautism.com

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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