You can work towards your Occupational Therapy goals at home too!

You can work towards your Occupational Therapy goals at home too!  

While Covid-19 has made our days unpredictable, some of us are still living our lives like we always have. Most if not many of us are racking our brains trying to keep the kids busy at home in order to provide continued structure untill they go back to school or therapy. I find myself thinking on daily: When will they go back to school? When can I go back to work? When can I bring them back to therapy or take them to their normal appointments etc.? Even through the unknowing, we need to remember, we can provide structure, predictability, and even therapy to the household.  

Here are some simple things you can do to keep therapy at home productive. 

  1. Keep the morning routine as if they are going to school or therapy.  

Continue to have everyone wake up around the same time they normally would. This is not a vacation; this is just a pause in their norm. Continue to get dressed, no laying around in pajamas all day. Staying in what we slept in signals our body that we aren’t ready for the day and to work. Most importantly, remember to eat breakfast, then get up and do something. This can look like several things depending on your routine, but remember to stay hydrated, nourish and move your body. 

                                                daily routine

2. When it’s time to do therapy/school make sure the space is clear from distraction. 

Set up an area at the kitchen table, or a small working table for the kids with only what they will be using during their therapy/school time. Keep favorite toys away and electronics off. Even if they aren’t the ones using it. A good example would be the TV in the background; hearing this, let alone seeing it, is enough to distract each child away from something non-preferred.  

kid work area

3. Provide a visual schedule.  

Listing out what they need to do is a big motivator. Especially if you list a preferred item they DO get to engage with at the end. They can see what they are working towards. If your child can’t read yet, draw or use pictures. Once that task is complete, let them cross it off or erase it from the schedule. Being able to do this is a big motivator that they are one step closer to completing their therapy for the day. Lastly, Keep the visual schedule short. No longer than an hour at a time. You can always come back to do another list of items later. 

                                                                                                       scheudle

4. Be available to help your kids. 

Being engaged in their therapy and tasks is very helpful. It shows each child that you are “in it” with them. When they are struggling with a task and they ask for help, encourage them to try independently first and then chime in or physically help them start the step, allowing them to finish it. A good example is buttoning a shirt. You can help feed the button halfway through, but allow them to pinch and pull the button to complete the task. Don’t be afraid to step back and let them struggle or even fail at the job. This is the only way they learn. Through trial and error, they gain increased independence and they learn from their mistakes. Encouraging them to use their own executive functioning skills such as problem solving or planning to work through each repetition. Remember, they are in a safe environment to make mistakes and you will be right there to help them along the process.  

images-3

5. Use peer models if available 

If you have other children at home, involve them in the therapy process. There have been studies showing that watching a peer model complete a task, then having the child copy, furthers their learning at a faster pace. Some may know this as “monkey see, monkey do learning. Having peer involvement also allows for natural encouragement and social interaction with children around their age. As humans we learn by watching and trying to copy what we see, we thrive on engaging with others. This is an easy way to engage the whole family to spend time with one another and show their love and encouragement. 

                            peer model                                      

6. Most important, Make Therapy FUN 

This is by far the best way to get a “buy in” from kids that do not like to do challenging tasks. Use a character they love, their favorite color or a stuffed animal as a puppet, to encourage them to engage and try. At the clinic this is something that is done by a lot of clinicians. Find what interests the child and use that as a motivator with the task that needs to be worked on. Chanel your inner kid! If your child is 5, then you be 5. During this time, don’t take life seriously! If the kids mess up, don’t let it affect your perfectionistic parenting side. Brush it off and say,That’s ok, we all make mistakes, let’s try again”, or “Oh man, that’s hard for me too, lets help each other”. One that I use a lot is “I don’t know how to do this. Do you? Can you show me?” engaging in the same task, side by side. When others are doing the task as well its called “The group plan” and can help children stay focused on participating in the job. Everyone has their part, not just the child with the goal. It goes along with point 4 above. Be there to help and be silly and fun while you are doing it! 

     fun                                                

7. Lastly, Keep it simple. 

Use what is around your house. If the therapy goals are dressing, use their own clothes, start by practicing off the body at the table or on a doll. Then once they have that skill, complete it on their body. This adds another element that is challenging to motor plan while learning. Use items in the kitchen like tongs to pick up items if they have a grasp goal, or circle cereal to feed onto dried spaghetti noodles for more hand eye coordination. Use your imagination and creativity! You can always go online and find simple ideas for therapy in the home. Try not to add to many extra bells and whistles, just remember to keep it simple. 

                                                                     keep simple

This too will pass and we will be back in the clinics receiving therapy from the professionals and living our structured lives soon. Till then, hang in there parents! Take this time to enjoy the simple moments that we normally do not get and remember to breathe. You can do this! 

 

Breanna Mosebach, COTA/L 

PCI Certified Parenting Coach  

Helping Your Kids Reduce Anxiety During Covid 19 Situation

Helping Your Kids Reduce Anxiety During the Covid 19 Situation

medical 2

We are currently living in a time that is unsettling. We do not know what tomorrow will look like, if we will have jobs, if we can pay bills, if school will finish this year, etc. I am beginning to notice a change in our kids as well with their anxiety raising.

Many kids are enjoying this long break from school. I predict in a few weeks they will all be bored after being stuck home, not going anywhere, and not spending time with friends. I also am anticipating many kids having high anxiety as parents and caregivers begin to experience financial strain, job loss, changes in jobs, etc.

conern 1

So what can you do as a parent or caregiver to support you kids?

  • Check in with them daily to see what they are thinking and feeling.
  • Remind your kids this situation is a grown-up problem, and they should just focus on them being a kid, doing their expectations, and enjoying a break from school.
  • Share with your kids any changes that are going to happen, including you working from home, the loss of a job, changes in finances, etc. Do not do this to raise their anxiety, but rather remind them you as the grown up have decisions to make to continue to support the family.
  • Explain to your kids the expectations each day that they have, i.e. chores, schoolwork, etc. Keep them structured with fun free time built in!
  • Be open and honest with them (but keep it age appropriate) about the global situation with Covid 19. Use this as an opportunity to teach them about global response, economy, health issues, sanitation of home and work area, etc.
  • If your child has a lot of anxiety, deal with it! Please do not let it go untreated. Again, support your child with their emotions, validate how they are feeling, remind them grown-ups are dealing with this situation, remind them they are safe at home, and if needed, seek out medical support with counseling and/or medication.
  • Many therapists and doctors are now offering temporary telehealth sessions for therapy and medical appointments. Reach out to those professionals for more support for your child.
  • Likely you as a parent or caregiver have high anxiety right now too, be careful to not show this to your kids. Keep this between you and other grown-ups in your life. Kids can often pick up on the anxiety from adults; show them your happiness, happy thoughts, etc!

stress4          parents love

Hang in there! This is a crazy time but positive can come out of this situation. Enjoy the extra time you have with your family right now and teach them the board games we played growing up that they have never experienced! Find fun things at home to do, take time to do self-care, and most of all, just laugh and be silly with your kids!

parents love 1

Jen Edwards, LMHC

Owner and Director of Beautiful Autism

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.

normal3
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.

rathe_autism2_met
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!

normal1

Jen Edwards, MA LMHCA

jen@beautifulautism.com

http://www.beautifulautism.com

Young Adults with Autism

Young Adults with Autism

                The experience of young adulthood is challenging enough without the aspect of Autism thrown on top of it.  Think about it, so much of young adulthood is the social aspect and the experience of getting a job and living independently.  These are not generally strengths of individuals with Autism.

young adult1

                They want so much to fit in and be on their own.  Their logical side can come up with the logistics of it- the budget, the plans, etc.  But it is such a challenge for them.  My heart aches for them, as they have these high ambitions with hesitancy and anxiety.  As parents, how can we help our children through this?

Social Skills in Young Adulthood

                Here is the scenario I often see: we push our kids with Autism to get involved socially in high school.  They are going to therapy and social skills classes.  They have assistants in their classes.  Parents follow up with teachers and staff at the schools constantly.  Parents help them through everything.  Then high school ends.  They are expected to possibly attend college and move forward with being an adult.  But they have had so much assistance throughout their childhood that they really do not have the maturity and knowledge to know figure it out.  We have held their hand through these social situations, and now they must do it on their own.

                Individuals with Autism can be very successful in college academically, but socially they struggle.  Many parents would say this is a curse in disguise, as generally they will not be attending the frat parties and get involved with illegal things.  But they begin to realize they do not fit in and anxiety and depression begins to rear its ugly head.

positive2

                Then they begin applying for jobs.  But socially they tend to not know how to interview well.  They may be qualified for the job, but socially they cannot handle it.  Finding a job that does not require a lot of social skills can be difficult.

                Practice interview skills with your young adult.  Give them tips and ideas.  Help them find a job you know they can be successful at.  Use therapists to help with these skills and ideas as well.

young adult2

                Another idea is try to keep them involved in some type of social atmosphere.  For example, church groups or groups such as gaming groups might be a good fit.  Use their hobbies as ideas to find groups for them to connect with.  Basically, find a social group that they will likely stay with and enjoy.  I would also encourage the social skills groups, but those can be very therapy based- find something else also that is more natural and enjoyable.

young adult4                                  young adult5

                There is also the aspect of romantic relationships, which honestly is a whole other post for another day!

Beginning College

young adult7

                In our culture today, we put so much success on going to college.  But honestly, people can be successful without college too, especially if it is a struggle for them.  Now do not get me wrong, I think college is great, but it is not for everyone.  If your child is struggling too much with it, do not push them.  Find alternatives such as online college or simply not going for now and focusing on job skills.

                This is the time in their life when you need to step back more and see what he/she is capable of doing.  It is hard for us as parents because we have done so much for them already, but they need the independence skills before they can go out on their own.

                First, find out what their ambitions are.  Have them write it out and make goals.  Have them also have backup plans if their first ambitions do not work out.  Then encourage them through their goals and support in ways you can without micromanaging.

young adult3

Moving out and Becoming Independent

                This is a scary step for any parent- watching their child becoming independent enough to move out on their own and support themselves.  With Autism this can be horrifying!  Can they handle the stress and concepts?  Can they pay bills and balance a checkbook?  Will they be able to socially adjust appropriately?  YIKES!

                Again, encourage your son or daughter and help them without micromanaging the situation.  Have them write out their goals and plans.  Take them through the basic steps and allow them to show you they can handle it.

young adult6

                But most of all, allow them to make their mistakes.  HARSH I know.  When the mistakes are made, help them clean it up and move forward.  And yes, this may mean moving back in, but now they understand what they need to do and have in order to gain the independence back again.  This section is honestly another post entirely.  But hopefully these thoughts and ideas can help prepare you for the beginning steps.

What to Plan for

                Start thinking now how this will look for your family and your child.  Start preparing them early while they are in high school for the challenges of life after school in adulthood.  Let them help with your billing and budget so they understand the processes behind the independence.  Encourage them to get involved in the social groups and hobbies.

                Being prepared and ahead of the situation is always best, especially with Autism.  Have plans and back up plans prepared.  Try not to push too much, but give them gentle pushes when needed.  And use a therapist to help through these transitions and ideas.  Often they will not listen to you because you are mom and dad.  Allow the therapist to push reality into them, and you encourage them and be their cheerleader.

                These are all things I work with on my young adult clients.  If you need help or ideas, contact me.

                Help your child be as successful as they can be!  Love them, encourage them, strengthen them.  Prepare yourself for being the parent, but also being their support and friend now that they are independent.  Good luck! 🙂

Contact Information

Jen Edwards

720-258-6392

jen@voyagescounseling.com

Ideas for Communication during Autism Meltdowns

behavior2

Ideas for Communication during Autism Meltdowns

                One of the most difficult aspects of Autism is the meltdowns.  Especially if they are in public places!  The looks from people and the muttering under their breath never seems to help neither the situation nor your confidence.

                Last Sunday I was at church with my son and he was beginning to go into meltdown mode.  He could not tell me what was wrong and just wanted to draw on the chalkboard.  I was so frustrated because he would not communicate to me what he was feeling or what had happened.  So I finally gave up and let him go to the chalkboard and draw.  Boy was I surprised what came from the drawing!

Drawing a Picture of the Situation

drawing1

                My son began to draw on the chalkboard a picture of what had happened.  While he was drawing, he was describing to me his emotions and the emotions of others around him.  He was also explaining to me the situation and what happened to make him upset.

                I was shocked that he had thought of this idea to help him cope with and explain things.  When he was done, he looked at me and said, “That was better mom.  Now I feel better.”  This is something that we will be using in the future to help him explain situations and his feelings involved.

drawing2

Writing out the Situation

                Once kids are older, they may want to write out what happened- especially if they are gifted at writing.  A sixth grader I work with tried this the last two times he got upset at school.

drawing3

                While he was writing the situation out on the computer, he was able to go back and add details and take out things as he saw fit.  Because he tends to talk quickly and think faster than he talk, this gave him the opportunity to explain the whole story without forgetting things, and he was able to take his time thinking about the situation and how he was feeling in each moment.  Once completed, he was able to share the document with the different people he needed to explain things to, which eliminated the frustration of verbally sharing the story five times over.

drawing4

Final Thoughts

                Now, these ideas do not take away the importance of having them verbally process the situation.  We still do that, but it allows them to process in the way they are gifted at processing things without getting more upset.  Appropriate consequences are still given, but the child is allowed to explain things his/her own way.

                I also wait until the child has calmed down enough to do the picture or writing.  For example, I cuddled with my son for ten minutes and my student rocked in the rocking chair and spent time alone with quiet music and a book in a calm room before processing the situation.

meltdown2

                Will this work every time?  Possibly not.  Part of the trick is teaching them how to do this before an incident happens.  My son’s therapist has been having him draw something about his week each session and my student has been writing about things that have happened in the past.  So they had been essentially practicing for this situation and felt comfortable doing it.  The fine motor skills activity was also helpful in helping them calm down and reduce the anxiety level.

                Certainly there are many other ideas and thoughts for processing after a meltdown.  And of course this can work for kids that are not on the spectrum as well.  Share with me your thoughts and things that work for your children!  Practice these skills with your kids so they can implement them to help them process!

Autism in the New School Year

Autism in the New School Year

A friend of mine recently told me, “You said August and September were going to be difficult months; you were right.” The new school year is always a challenge for kids on the Spectrum. New schools, new teachers, new rules, new classmates, new schedules and routines. Generally it takes 6-8 weeks for kids to acclimate to the new year and feel settled.

school1

How Can I Make This Better?

Try to predict how your child is going to react to certain things; plan ahead. For example, if I know my son is having a change in his school schedule (such as an assembly), I need to explain the day before and the morning of to remind him and answer any questions. One nice thing about Autism is it is generally predictable once you know and understand your child. We are able to predict how our son will handle certain things and can then prepare accordingly.

Now certainly we are not always 100% accurate, and often he surprises us with handling things well, or on occasion not well. But being prepared and thinking ahead has made our lives SOO much easier.

Keep in Communication

Talk often to your child’s teachers and workers. I probably email my son’s Special Education team at least 3 times a week. I email his teacher a couple times a week. I want to know what is going on and how things are going for him. I am proactive in following through with his behavior at school and finding links to problems.

advocate2

Talk often to any therapists your child has, especially right before a session so they know what is going on and how to work with them.

And of course, talk with your kiddo! Find out what is bothering them. Ask them how YOU can help them. Talk about your expectations. Be supportive of your child and communicate daily your love!

The Challenging Behavior- DAILY!

Like I always say, keep calm. Fight the battles that are worth fighting. You will need to find the balance between what is worth focusing on and what behaviors you can ignore. This is not easy and often stressful. On the one hand, you do not want your child getting away with everything, but you want some peace in your home as well.

summer 3

Try to find the links between the challenging behaviors. Many times there are no links to be found; sometimes you find links in the most peculiar places! Use a lot of positive rewards. For example, when my son comes home with no sad faces on his behavior chart, he will get a “good boy treat” and often Mommy partakes in a “good mommy treat” too!

Use any close family and friends to help you! Find someone you can safely “vent” to and avoid venting in front of your child. We all need to be able to talk openly at times about our struggles. If you do not have that safe person, I encourage you to find someone quickly! You might want to have someone that you can talk with on the phone or face-to-face versus texting/email, etc. Pastors, social workers, and counselors are some examples of safe people if you do not have family or friends.

Final Thoughts

Hang in there! Hopefully by the holidays your child is more calm and confident in his/her situation. Then they get the nice holiday break and have to start all over again come January!

Use picture schedules or written schedules when necessary and helpful. Find other tools that will help your child succeed.

Remember, you are called to be parents/workers with this beautiful child, and you will become qualified!

school2

 

Autism and Terrible Behavior

The Terrible Behaviors

                My heart broke this week.  Why is he acting out so much?  My son’s behavior was horrible this week.  I cried, I got angry, I thought endlessly, and I prayed.  There seemed to be no common thread to this problem.  The school could not figure out why the physical aggression was so intense.  He was hitting other students for no reason and throwing chairs.  Really?  Is this MY son?

behavior2

Take a Breath… Be Calm

                We can analyze the situation all we want until we go stir crazy.  We can email teachers and demand answers.  We can talk to other people and get feedback.  The main thing to keep in mind: Our reaction can make or break the situation.  Overreaction can be devastating and under reaction can prolong the situation.  So where is that fine line of boundaries?

                It would be so nice if we had a manual that came with the delivery of our children.  Chapter 5: How to Handle Physical Aggression at 5 Years Old.  But we do not get manuals; we only get advice from past experiences.  So we take advice and sometimes it is great and often it is not applicable to the situation.  And we continue to search for the boundaries.

behavior1

                First, stay calm.  Look over the whole situation, take notes, and talk openly with trusted people who will listen and not offer advice right away.  Stay in constant communication with teachers, therapists, and other individuals working with your child.  Look for common threads in both positive and negative behaviors.  Talk with your child and try to get reasons and understanding from his/her perspective.  But I warn you, be gentle and patient while talking with your child; do not raise your voice or threaten with demands and punishment.  Try to understand your child while you listen to him/her.  Explain it is safe to open up to you.  Remember, you want answers- you are not there to get answers for punishment and discipline.  You want to help your child succeed!

Finding Answers, Then What?

                When you get some answers, even if they do not make sense, communicate with the other individuals involved with your child.  Together you can all begin to put the pieces together.  Continue to stay calm and understanding of your child.  Forgive your child and tell your child you still love him/her.  Follow through with communication.  Continue seeking knowledge and understanding while getting help for the problematic behaviors.

advocate2

Possible Reasons for Disruptive Behavior

                Here are some possible explanations for difficult behavior:

Too much stimulation

Changes in routine

Illness or pain

Not enough sleep

Confusion about something

Emotional imbalance

Unable to cope with anxiety

Disappointment

                Remember, every child is different.  Your child’s difficult behavior may be related to something not on this list.  These are just common ones I often see in Autism (and typically developing children too).

                Please share with me any other thoughts or things your child struggles with.  If you find yourself at a loss of what to do, seek help through myself or another professional.  Meanwhile, hang in there fellow parents and professionals!  I understand your struggles and frustrations.

                After all the emotional struggles this last week with my son, we took him to the dentist only to discover his six year molars were pushing through.  No wonder he has been deregulated!  So now we are working on helping him to communicate with us when he is in pain somewhere so we can help him. And afterwards, we had some “alternative medicine” at Cold Stone!

behavior3     behavior4

                Sometimes it feels like we move one step forward and then suddenly two steps back with our children on the Spectrum.  Keep staying calm and searching for answers.  Overall you are moving in the forward direction in his/her life.  It may not always seem like it, but hang in there!

Contact Information

Jen Edwards

jen@voyagescounseling.com

720-258-6392

Being an Advocate for Autism

 

advocate1

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.

advocate2

                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!). 

advocate3

                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

Sharing Your Autism Story

Sharing Your Story

                We have always been pretty open sharing our story about our son’s diagnosis of Autism and the struggles we went through; but we shared it with family and friends.  It was safe, we were vulnerable… sharing with strangers felt like in intrusion into our personal lives.

                And then last Thursday happened…

I shared My Story

                Last week my son had swimming lessons; they did not go well.  He did nothing for two weeks.  The last day of lessons came and my attitude was sour and ugly.  I did not want to take him and sit there for 30 minutes watching him do nothing.  And honestly, if I had not paid good money for it, I would have not taken him.  But I went.  And something amazing happened!

                We arrived at the pool early.  I decided I had enough.  I took my son into the kiddie pool, let him play for a few minutes, rolled up my pants, climbed in, and made him do a back float (something he was scared to do).  It was like that saying sink or swim.  He finally did it, I felt like a mean mother, and I sent him to his lesson.

share1

                I sat on the bench and after a while a grandmother came and sat down next to me.  I did the polite quick smile, something you should do according to culture standards, though I did not feel like smiling and making small talk.  I wanted to just be left alone.

                As I sat there watching my son, a smile crept on my face.  He was not only participating, he was doing EVERYTHING!  Floats, bubbles, bobs, he did it!  I admit, I may have had tears in my eyes!  The lady next to me laughed and made some sweet comment about him.  I just smiled, pulled out my phone to distract myself, while watching my son every few seconds.  I was one proud mama… but really this is not what the purpose of this post is about…

                My son came over to me and I told him I was so proud of him for all his hard work and after lessons we could celebrate by going to ice cream.  His only reply, “Did I do my bobs mom?”  I replied yes and he went on his way to go down the water slides.  The lady next to me commented how cute that was…

                Now at this point normally I would have found an excuse to leave or simply distract myself on my phone, but I found myself spewing out about his Autism and our story.  Half way through I wanted to slap myself silly for spilling all this information at her- a perfect stranger.  I explained what I do as a career and this is where I suddenly realized why I was doing this… she looked at me, tears in her eyes, and stated, “My son is 31 years old and was just diagnosed with Aspergers a few years ago.”  Stunned.

It All Comes Together for Good

                The lady proceeded to explain briefly her son’s story.  I listened carefully while still watching my son and his grand achievements.  The story was intriguing and I realized at that point, while listening to this lady speak from her heart, I opened up to this lady so SHE could open up to me.  She needed this time and opportunity to talk.  And I was privileged and blessed to listen to her.

share2

                My story helped inspire this lady to open up.  So is that why I shared my story?  Maybe.  What did I learn from this experience?  God’s plan is perfect; maybe I will never see this lady again or her son, but I touched her heart and made an impact.  Will I share my story again with a stranger?  I do not know, maybe, if the time was right and it can bring some benefit to someone.  Or if it was just simply laid on my heart again, like it was this time.

What is my Point?

                I encourage you out there who are parents of a child with Autism- share your story!  You never know who you can bless with your story, or you may meet someone who can help you in some way.  Be an encouragement to someone.  Use your story to help people!

                Why did God give us a son with Autism?  I do not know, but I know this, we can help teach others, bless others, and in turn bless ourselves.

 

Explaining Autism to Others

Explaining Autism to Others

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

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

explaining1

Personal Thoughts vs. Reality

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

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

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

explaining2

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

Emotions

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

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

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

explaining5

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

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

Final Thoughts

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

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

explaining3