Autism: When Will Therapy End?

Autism: When Will Therapy End?

Do you ever feel like all you ever do is go to therapy sessions? Many days a week, driving all around to different therapy clinics. Speech therapy, behavior therapy, occupational therapy, counseling, doctor appointments… it gets daunting and expensive. Other families are doing the same, but it is not therapy they are going to, it is usually sporting events, and every three months they get to change the sport. But you are here, stuck doing the same routine, with the same problematic behaviors, and going from one place to the next, dragging the family all over the place.

A question parents often ask me is, “How long will therapy go on for?” I cannot answer that definitively. Sometimes therapy is short and progress is make quickly; this does not usually happen. Often therapy needs to continue for years. Individuals with Autism need more time to learn and grow compared to their typically developing peers.

Here are some things to keep in mind about therapy:

• Your child needs this; it is not a waste of time
• After six months if no progress is being made, reevaluate with the therapist to see if this is the right time or model for your child; it may be worth taking a break and trying again later
• Often children can become weary of therapy after a while; it can be worthwhile to take a break for a few months and start up again with a fresh outlook
• After two years of continual therapy, talk with the therapist about if continued services are truly going to be effective; at some point there is a baseline that families must recognize their child will maintain and continual pushing for more may do more harm than good
• If possible, join in on the sessions so you can also be taught the techniques to continue work at home with your child to continue progress.    
• If you are unable to join the session, use the time your child is in therapy for yourself; you can read, catch up on a show, do a quick shopping, or just relax!

Perhaps the greatest thing to keep in mind is no matter what your feelings and emotional stress is regarding therapy, if your child is getting the help he/she needs, then the time is worth it. Remember, you are the expert on your child, you know how much they can handle and cope with. The therapist is the expert in their particular field, they know how much progress has been made and could potentially be made. Together come up with a plan and goals. If you both feel like things are not moving forward in a positive direction, then perhaps it is time to step away from therapy, at least for a few months.

In the meantime, enjoy watching your child progress and grow in their knowledge and understanding! Recognize the purpose of the therapy and ask the questions you have for your own better understanding. Do your best to keep things organized and plan ahead to reduce your stress. And finally enjoy the exciting (and maybe sometimes infrequent) bursts of shooting stars of knowledge they gain and then use on their own!

Autism and Going Back to School: A Must Read for Teachers and Parents

Autism and Going Back to School: A Must Read for Teachers and Parents

I taught school off and on over eleven years. I am also a parent of a child with Autism. So one could say I clearly understand both sides of the picture when it comes to the beginning of school. It can be complicated, overwhelming, stressful, and yet exciting. The emotions are much more intense for kids with Autism. But the stress of having to face the social norms and functioning once again with peers can be daunting. I would even go as far to say that most higher functioning children with Autism stress more about the socialization aspect of school then other areas, though they may not always realize it or be able to express it.

Here are some simple tips and reminders to help families and teachers prepare the darlings for going back to school:

• Remind them weeks and days ahead of time when the first day of school is.
• Go visit the school and the new teacher and classroom before the first day of school.
• Email the new teacher a few days before going back to school. Allow your child to ask some questions, share some concerns, etc.
• Spend some time playing on the playground before going back to school. This will allow time for your child to relax a bit and readjust back into school.
• When you visit the classroom, take pictures of your child sitting in the new desk, with the new teacher, etc. This way you can help prepare your child for going back to school by looking at the pictures and talking about them once you go back home.
• Read books about going back to school. Write social stories about going back to school. Ask the teacher for a daily schedule ahead of time so you can begin to process it with your child.
• Find some students in the class that you might recognize or know from previous years that you know has been helpful and positive for your child. Let the teacher know who they are. Also, do not hesitate to express concern over any student who you know can be a trigger for your child.
• Parents, consider writing a letter to the teacher, explaining who your child is and the “dos and don’ts”.
• Teachers, consider writing a letter to the student (and family) telling who you are, things you like to do, etc. Make the family feel welcome to your classroom.
• One of my all-time favorite ideas is to have the teacher within the first few days of school talk to the class about Autism. I usually suggest doing this while your child is out of the room, maybe for speech or something. The teacher can explain briefly what Autism is, how it affects people, and what we can do to help people that have it. If you are comfortable with it, allow the teacher to even tell the students your child has Autism. When I have done this for my son, the school year has been MUCH better socially! The students accept him and understand why he acts the way he does. They go out of their way to help him and understand when they need to back off from him to give him space. It truly makes all the difference in a school year. If your child is old enough, consider having him/her talk to the class about it, or even yourself! If you are the teacher reading this, approach the parents and ask about it. I have done this before and usually get a positive response from parents. Again, I have seen students go from feeling irritated and annoyed with the student, to complete empathy and understanding towards the student.

TEACHERS: Remember these parents are exhausted and very busy! Just like you! So they may not respond quickly to emails or phone calls. Be patient with them and understanding of their situation. We want what is best for our child, but often we need to process it. I sometimes think families that have members with any disability is a culture all of its own. Often teachers struggle to make connections with these families; I think this is likely why. Sometimes just asking the family how you can continue to help and support them makes them feel more appreciated and loved. Continue doing the best you can, get support from teammates, and love on that student!

Feel free to ask any questions you might have about going back to school. Tis the season! And Good Luck!

Jen Edwards, LMHCA

Counselor and Behavior Therapist

jen@BeautifulAutism.com

Autism: Going to Bed Alone

Autism: Going to Bed Alone

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.

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.
• 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.
• 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

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

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.

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.

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!

Autism Spectrum Disorder Is Like a Train

Autism Spectrum Disorder Is Like a Train

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.

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!

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

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.

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

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.

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

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.

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.

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.

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.

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!

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.

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.

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!

Jen Edwards, MA LMHCA

jen@beautifulautism.com

http://www.beautifulautism.com

Autism: Tis the Season for Troubling Beahvior

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.

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).

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.

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.

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

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

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.

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.

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!

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