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 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: 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

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