Photo of the Week #12: A Kind Man at Church

Every Sunday when we are at church, EL sits quietly during the service and loves to draw while listening to the sermon. She will go through several sheets of notepad paper, drawing a new picture on each piece; and she always makes sure to write, "To Gib, From ELS" on each piece. Then, after the service, she immediately meets up with Mr. Gib to see if there is a drawing he would like to have for his collection. Mr. Gib chooses a drawing he likes, then asks EL, "Will you take a dollar for it?" She always says yes, takes his dollar, and then (with a big smile on her face) hands it to me to put into her wallet.

I don't remember when Mr. Gib started doing this, I know it has been at least a year, maybe two. But, last Sunday, I took a picture of one of these little transactions. If you are reading this, Mr. Gib, I want to thank you for being such a blessing to our sweet girl in this way! You have developed a sweet connection with her, and she looks forward to seeing you each Sunday.

Proverbs 11:25 - Whoever brings blessing will be enriched, and one who waters will himself be watered.

Obtaining Legal Guardianship for Our Adult Special Needs Child

County Courthouse

Our daughter, EL, has turned 18, and it is a time full of mixed emotions for us. Happy as we celebrate her life and all the accomplishments she has made thus far. But, also a bit disheartening as we watch other girls her age becoming independent young women. We know that type of independence will not happen for our EL. She will always need some sort of supervision, as she is not capable of making important life and medical decisions on her own. With that in mind, David and I had to start the process of obtaining legal guardianship of her and her estate. It is somewhat strange that we, as her parents, need to become her legal guardians. But, in the government’s eyes, she is now considered an adult at the age of 18 and, therefore, presumed to be capable of making important decisions, as well as accepting adult responsibilities in full. So, if she doesn’t have a legal guardian to make the important decisions on her behalf, then there could be a disastrous outcome.

I want to share our experience with you of how we are obtaining legal guardianship, to maybe help prepare other parents of special needs children who will be walking this same road in the future. This has been all new territory for us, and there has been a lot of paperwork involved. But, it isn't as daunting as you might think. Just be sure you have a good attorney working with you and for you. FYI: There is a way to do all of the paperwork and petitioning on your own but, if you are not familiar with doing this, I would not recommend it. Our attorney was able to get certain things waived that would not have happened if David and I had done the petitioning on our own. Plus, having an attorney makes it more reassuring to know that things are being done correctly.

So, here’s a brief summary of our experience so far: 

1.  At the start of the year, we knew this was the year of transition, so we called around to several different lawyers in our area to see which ones were willing to accept a guardianship case. We finally found one, and went to his office to consult with him and get the ball rolling. But, there wasn’t much else we could do at that time. We had to wait until 2 months before her 18th birthday before taking the next step. 

2.  Step two was a very important step. I made an appointment with EL's Pediatrician,  took her in to get a physical, and asked the doctor to fill out the papers drawn up by our attorney. The paperwork included essential information from the doctor explaining the necessity for us to obtain plenary guardianship of EL. (NOTE: Plenary guardianship is when the court gives the guardians the power to exercise ALL legal rights and duties on behalf of a ward [i.e. a disabled person], after the court makes a finding of incapacity.)  

3.  Several weeks later, we had another meeting with our attorney, who drew up papers for David and I to sign. These were signed in order to petition the court for temporary plenary guardianship. This type of guardianship is good for up to 60 days, during which time a final hearing is held to determine the need for ongoing (permanent) guardianship.

4.  We went to court two days after EL’s 18th birthday. My husband gave testimony on the witness stand, our attorney represented us well, and temporary plenary guardianship was granted to us with no problem.  

5.  The next step is coming soon, and that is to have EL served a summons by the Sheriff's department requiring her to appear in court. It needs to be given directly to her, even though she really has no idea what it's all about.

6.  After the summons, we will await our final court date (scheduled in about a month), and that will be for granting us permanent plenary guardianship. 

If you have any questions for us about any part of this process, please contact me (or leave your questions in the comments section) and I will do my best to answer them. It's important to note that we are in Illinois, as each state has different procedures for granting guardianship. It will be important for you to find out what the requirements are for your state.

For Illinois residents, you can find a GUIDE TO ADULT GUARDIANSHIP IN IL at the IL Guardianship & Advocacy Commission website.

REVIEW & GIVEAWAY: The Life We Never Expected [GIVEAWAY CLOSED]

Christians, in particular, can feel like we ought not to vent our emotions at God; we prefer tidy prayers like "God, we don't understand, but we trust you" to the chaotic, confused, howling prayers we find in the Psalms. But those songs are in the Bible because we are supposed to express ourselves that way. "How long, O Lord? Will You forget us forever? What are you doing? Can't you see we're in agony down here, banging our fists against our tear-soaked pillows and eating dust for dinner? If you ever loved us, O God, come and fix things! Now!" If God is big enough to be worth yelling at about your situation, He is big enough to take your pain, hear your lament, and somehow use it to comfort you in the confusion. ~ Found on page 54 of The Life We Never Expected  by Andrew and Rachel Wilson

This is a book I am sure I could have benefited from when my daughter was first diagnosed with autism.  Andrew and Rachel Wilson, who have two children diagnosed with regressive autism, discuss fighting for joy, thriving in the midst of trials, grief, healing, prayer, and more. Through it all, they point readers to Christ, the One who promises to make all things new.

If you are a parent of a special needs child, this is a great book to pick up. It is a book of short reflections that reveal the real thoughts and real feelings of the authors. They use their own experiences to help others process the various stages that come with parenting a special needs child.

BUT... even if you don't have a child with a disability, this book can be good for you, too! It is actually good for ANYONE, because it covers things like loss, hope, contentment, and joy. Plus, the chapters are short and easy to read, which is a good thing for all of us busy people.

Enter below for a chance to win a copy of this book. Entries will be accepted until Saturday, July 9, 2016, at 8:00 p.m. CST. One entry per mailing address.

Entry-Form

Disclosure (in accordance with the FTC’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising”): Many thanks to Propeller Consulting, LLC for providing this prize for the giveaway. Choice of winners and opinions are 100% my own and NOT influenced by monetary compensation. I did receive a sample of the product in exchange for this review and post. Only one entrant per mailing address, per giveaway. If you have won a prize from our sponsor Propeller / FlyBy Promotions in the last 30 days, you are not eligible to win. Or if you have won the same prize on another blog, you are not eligible to win it again. Winner is subject to eligibility verification.

Three Kinds of Relationships with God

The word of the week is RELATIONSHIP 

: the way in which two or more people or things are connected

A couple of years ago, during the month of April (Autism Awareness Month), my family and I attended a special church service especially for parents of autistic children. The speaker, Dr. Paul Kingsbury, was addressing special needs parents; but I think his topic can be applied to any of us. He  spoke about how we all have a relationship with God in one of three ways:

1. a close relationship
2. a distant relationship
3. a non-existent relationship

He went on to say our relationship with God will determine our outlook on the trials/storms we go through in life. I wholeheartedly agree with this.

Out of the three relationship types listed above, I would say I fit best in the first category. I don't claim to have all the answers, and I know there is always room for improvement, as any relationship takes work to keep it thriving and healthy. But, my desires and my focus are to do God's will, and to allow Him to work in and through me. I go to Him when I am struggling, I thank Him when I'm not, and I try to praise Him at all times. That is what I consider a close relationship.

Keeping that in mind, my relationship with the Lord is what has helped give me the strength I need on the hard days. He listens to my cries, gives me wisdom to know what to do when I don't have the answers, and can help me be at peace in the middle of a storm. I am so thankful I don't have to try and handle things on my own, because I know I couldn't do it.

Throughout the years, many well-meaning friends have tried to encourage me and my husband by saying things like,"God gave you a special needs child because He knew you could handle it." While I understand what they are saying, and I'm grateful for their kind words, I don't believe that is true. To "handle" something means you can manage or accomplish it on your own. But, there is absolutely NO WAY I could handle raising a child with special needs without help (or even a child without disabilities, for that matter!) But, I'm thankful to have a relationship with a God who CAN handle it - a God who has been there all along to help me, and my husband, accomplish His will for our lives.

What about you? What kind of relationship do you have with the Lord? If it's non-existent, check out WHY WE NEED SALVATION for information on how you CAN have a relationship with Him. If it's a distant relationship, what is holding you back from becoming closer to Him? Start right now by talking to Him about your struggles, or by giving Him thanks for your blessings. He's waiting to hear from you.

Encouragement Challenge #15: Prayers for Autism

APRIL is the official month for "autism acceptance" (also known as "autism awareness.") With how many diagnoses there currently are, I am sure you know a family who has been affected by this disorder.  

ENCOURAGEMENT CHALLENGE #15: 

Each April, Jack and Rebecca Systema, the founders of  a ministry called CHILDREN OF DESTINY, host a prayer challenge called TURNING THE TIDE FOR AUTISM.  

This week, I encourage you to download and print out (if you are able) the following calendar for the "Turning the Tide" prayer challenge:

APRIL 2015 TURNING THE TIDE PRAYER CALENDAR

It is already April 12th, but you can start the challenge at any time. Take a look at the calendar each day this week, look up the Scripture reference listed, then follow the recommendations for prayer. If you feel led, it would be great if you would continue on to the end of April. Let's all pray for a definite cause to be found, a definite cure, peace for those who are learning to cope with a new diagnosis, and strength for those who are struggling. 

Click these links for more information about Autism and Autism Acceptance Month:

 AUTISM ACCEPTANCE MONTH

AUTISM SOCIETY OF AMERICA - Why Autism Acceptance?

A Better Understanding of Autism

In light of Autism Awareness Month, I revised an article I wrote a couple of years ago, and want to share it with you now...

When my 15-year-old daughter was born, I never considered the fact that she might be among the many diagnosed with autism. At that time, I believe the numbers were 1 in 250 being diagnosed, but I wasn’t too aware of what it all meant until my life was personally immersed in it. I quickly learned that autism is a spectrum disorder, which means the symptoms and characteristics of it can appear in various combinations, ranging from mild to severe. No two children are alike. I also learned the symptoms of autism can improve with various therapies and treatments, which is very good to know. Unfortunately, one thing I wish I hadn’t learned is that raising a child with autism also includes being exposed to merciless comments made about you or your child. The comments are not always intended to be hurtful, but they usually come from a lack of understanding about the disorder. With this in mind, many parents have learned to ignore the comments (even though they do hurt) and/or have made efforts to educate those who will listen. That is my purpose for writing this article – not to whine and complain about unfair treatment, but to increase the awareness and familiarity of autism, and to help give others a better understanding of those affected by it. 

NOTE:  Included in this article are actual comments spoken from people who were misinformed about autism. These quotes were specifically sent to me by other parents of autistic children from various online support groups. (You would be amazed at how many comments I received, so weeding them down to a few was difficult.) Permission was granted to publish the comments; however, identifying names have been removed in order to protect the privacy of each one involved.

Comments Regarding Discipline

1.  Tina says: After my son had a tantrum in McDonald's, an elderly couple asked me if he was ok. I replied “He's fine, he has autism and sometimes...” and in mid-sentence, they interrupted me and said, "That's nothing a good swift kick in the butt wouldn't cure.”  

2.  Veronica had a very close relative tell her, "He is not autistic, he is just taking advantage of you, can't you see that? His problem is simple, he is just SPOILT, that's all.” 

3.  Lynn says: My daughter was “acting up” one day because we were away from home and in a different environment. She may have been hungry or tired, but just didn’t know how to tell me. I was having a hard time getting her to stay calm when my aunt (who was visiting from out of state) asked, “Would she listen better to her grandpa?” implying that my daughter’s behavior was due to a discipline problem and she needed a firmer hand to make her behave.  

Autism spectrum disorders are neurodevelopmental in nature, and it is difficult for affected children to understand the environment around them. They have barriers in their brains that make it difficult for them to adapt to their surroundings. This may include (but is not limited to) sensory dysfunction, lack of social skills, lack of communication skills and compulsive tendencies. As a child gets overwhelmed, he may “act out” in various ways to help him cope, such as arm flapping, rocking, screaming, crying, and/or being uncooperative. Many people confuse these behaviors with a lack of discipline, which is not always the case, and should never be automatically assumed.

Comments Regarding Special Diets

1.  Said to Laura - “Doesn't he starve?” 

2.  Said to Monica - "Maybe he won't talk because you won't give him the food he wants."

3.  One mom shared that her son's school felt she was being abusive because her son was on a restrictive diet for autism. The school said it is unhealthy to deny a child fast food and candy like other kids get.

Many children who have been diagnosed with autism or sensory processing disorders have dramatically improved after being put on special diets, such as gluten-free and casein-free (GFCF). Gluten is a protein found in wheat, oats, barley and rye. Casein is the protein found in milk products. Other diets, such as the Feingold Diet, include the removal of preservatives and artificial dyes. The limitations of these special diets are apparently confusing to many misinformed people.

Comments Pertaining to Language Delays

1.  Monica says: When strangers say “Hi” to my 4-year-old autistic son, I often tell them he cannot talk. Once, I got the comment, "Maybe he just doesn't have anything to say.” One lady actually said, "What did you do to the poor child?" 

2.  Said to Debi - "She can't be autistic. She's too smart." 

3.  Said to Laura - “Well, what did you expect. You let him point to an object to get his way - you should have made him talk.” 

Contrary to what some believe, the lack of speech in an autistic child does not mean the child is without intelligence. Children with autism do learn, and many can be successfully taught to function, when they are given appropriate therapies and treatment. Simply put, autism produces barriers in the brain which does not allow information to process correctly. A child with autism may actually understand what you say, but the barriers hinder him from being able to respond appropriately. However, many autistic children can develop functional language and others can develop some type of communication skills, such as sign language or use of pictures. Those who are mildly affected by the disorder may exhibit only slight delays in language, but could have a greater lack in social skills. Therefore, he or she may not be able to initiate or maintain a proper conversation. Communication is often described as “talking at others” instead of with them. For example, they may continue to talk about a favorite subject without pausing, despite the attempts of others to interject comments.

Comments Regarding Odd Behaviors

1.  Laurel’s son refused to eat meat of any kind due to oral-sensory issues. Someone said to her, “Can't you just reason with him?"

2.      Curtis shared how his son (5 years old at the time) would repeat things over and over. While at the store, he would say Hi to the employees, using their name from their nametags, then asked them continually, "What are you doing, (insert name)? Most employees could figure out that he had some type of learning problem, but one responded sternly, "I've answered you once; you should understand that by now." 

3.      Monica said:  One time in the grocery store, my son was flapping his arms. A man walked by and asked, "How long will he do that until he realizes he cannot fly?" 

According to the Centers for Disease Control and Prevention, 1 in 68 school children in the United Stated, have some form of autism. With the way autism has increased in numbers, I believe in the importance of making others aware of it. It is now considered an “epidemic.” Chances are, if a family member does not have autism, you will at least eventually run into someone who does. So, when that happens, please remember there is probably a reason why this child is “acting out” in some odd way. With sensory issues, compulsive tendencies, and lack of communication skills, these children are doing the best they can with whatever situation they are in. The parents, likewise, are doing the best they can to keep their child calm, happy, and secure in his world. Instead of making unnecessary comments, please be kind and courteous. A simple smile or a pat on the arm can be more encouraging than you realize.    

For more information about autism, please check out these websites: 

AUTISM SOCIETY OF AMERICA

AUTISM SPEAKS

Autism Affects Us All

 

 

 

You may be seeing a lot of blue lights shining this month, people wearing blue, people wearing puzzle piece pins, people decorating their homes and businesses - all to help increase awareness of autism.

Why all the attention on this disorder? Because the new numbers from the CDC show 1 in 68 kids now being diagnosed. We all need to be aware of this disorder because these kids will be grownups someday. Autism affects, or will affect EVERYONE on earth in some way.

If you don't know much about autism, please look it up or ask questions about it.  My husband and I would be happy to answer any questions regarding our daughter.

Preparing A Child for an MRI

In a PREVIOUS POST, I mentioned my daughter had a sleep-deprived EEG done, due to some new onset seizures. The EEG showed epileptiform discharges, which basically means she has some form of epilepsy. She was put on medication (Keppra) to keep the seizures under control, and was also scheduled for an MRI.

My blogging friend, Sylvia, also has a teen daughter with epilepsy and autism. She has been dealing with yearly MRI's for the majority of her daughter's life, so I asked her what to expect and if she had any advice for us. You can check out her response on her blog: 

LIVING AND LEARNING WITH OUR NEW NORMAL

While my daughter's situation is a bit different than Sylvia's daughter, I did glean some helpful advice from someone who has gone before us. (Thankyou, Sylvia!)

This past Tuesday was the day of the MRI. She did really well with it all, and we are now waiting for the results.  Here are some of the things we did to give us a more pleasant experience, some of which were already mentioned on Sylvia's blog: 

• My husband and I went together and shared in the care of our daughter, as well as kept each other company.
• We made sure we arrived in plenty of time, so we didn't feel rushed and more stressed out.
• We asked my parents to watch our son, so we could keep our focus specifically on the needs of our daughter during this time.
• We prepared our daughter ahead of time with explanations of what she could expect.   
• We prayed and had our family and friends praying.
• I bought lots of Jell-O and clear fruit juices ahead of time to keep her tummy somewhat satisfied, since she wasn't allowed to eat anything for 8 hours prior to the test. (This was because she needed to be sedated in order to keep her completely still during the test.)
• We distracted her prior to the test with a favorite movie.
• We allowed her to bring a favorite toy for comfort. (The toy of choice this day was a stuffed Rudolph the Red Nosed Reindeer.)
• Before they inserted an IV into her hand, we allowed them to give her nasal Versed, a medication that was sprayed into her nose in order to relieve anxiety. She did not like the spray up her nose, and had a few tears, but it was very brief. They also used a numbing spray on her hand, Pain Ease, before inserting the needle.
• We were there with her before they took her to the MRI room, and were there with her when she woke up.
• We stayed calm and reassuring, which always helps to keep her calm as well.
• As soon as we were done with the testing, we left the hospital and headed back to a more comfortable environment.

Maybe this will be a help to someone else who is preparing for their young child's or special needs child's first time MRI. Feel free to contact me with any questions.

Cancer Journey Part 16 - I Lost My Eyebrows Today

I guess this new chemo med is working, since I lost my eyebrows and most of my eyelashes in the shower this morning. As I washed my face, I noticed my eyebrows were hurting a bit. I gently pulled on them and the little hairs began coming out. At the end of the shower, I had only a few strands left, and they looked a bit out of place, so I finished the job with my trusty little tweezers. Now, my forehead and eyelids are "naked." Ha! Ha! Ha! I'm not upset about it. The hair will come back eventually. Until it does, I'll just be a bit cooler during the warmer months.

I had another chemo treatment this afternoon and slept through most of it. I'm still lagging a bit as I type this, but doing fine otherwise.

On another topic.... notice the puzzle piece I'm wearing on my scarf! April is Autism Awareness Month, and I'm showing my support. At least 2 people at the clinic have commented on it, and I was able to educate them a bit about what its for. That's the whole idea. So, if you have a pin, keep wearing it throughout the month of April!

MINISTRY FOCUS: Children of Destiny

JACK AND REBECCA SYTSEMA are the founders of  a ministry called CHILDREN OF DESTINY.  They are both ordained Christian ministers who have been involved in international prayer ministry since 1993. Their mission statement listed on their website is this:

"Children of Destiny is a Christian ministry dedicated to bringing God’s hope, life, and restoration to families and individuals struggling with autism and related disorders through the development and promotion of effective prayer, inspirational messages, and spiritual support." 

They offer FREE resources such as:

DAILY PRAYER - One for Parents with autistic children; One for Family and Friends. You can sign up to have these prayers sent directly to your inbox.

DAILY PRAYER JOURNAL PAGES - easy to print out.

DAILY DEVOTIONALS

BULLETIN INSERTS and other handouts.

INSPIRATIONAL ARTICLES

And MUCH MORE

Be sure to check them out and, if you have a child with autism (or are a friend/family member of someone dealing with autism), sign up to AT LEAST receive the daily prayers in your inbox.

MONETARY DONATIONS to Children of Destiny are tax-deductible, and are greatly appreciated.

Article: Understanding Autism

The month of APRIL is Autism Awareness Month. As a family affected by autism, my husband and I have been involved in helping raise the awareness of this disorder, especially since the numbers have now increased to 1 in 88 being diagnosed.

First of all, we joined Autism Speaks in the "Light it Up Blue" campaign. We have been wearing blue clothes, wearing blue autism puzzle pieces, and using a blue lightbulb on our front porch each night. I also made a CAMPAIGN PAGE to share with those who wish to make a donation. I have already reached my goal of $50.00, however, you are still welcome to contribute if you desire to do so.

One of my daughter's therapists (Sarah) has been handling a lot of events and activities in our area to help increase awareness of autism. This past Thursday, my husband was with her and another parent, being interviewed on our local radio station. They will be on again next Thursday.

And, here is the article I wrote for autism awareness. It is scheduled to be in our local newspaper soon:

~ ~ ~

Understanding Autism

By: Victoria Stankus

When my 13-year-old daughter was born, I never considered the fact that she might be among the many diagnosed with autism. At that time, I believe the numbers were 1 in 250 being diagnosed, but I wasn’t too aware of what it all meant until my life was personally immersed in it. I quickly learned that autism is a spectrum disorder, which means the symptoms and characteristics of it can appear in various combinations, ranging from mild to severe. No two children are alike. I also learned the symptoms of autism can improve with various therapies and treatments, which is very good to know. Unfortunately, one thing I wish I hadn’t learned is that raising a child with autism also includes being exposed to merciless comments made about you or your child. The comments are not always intended to be hurtful, but they usually come from a lack of understanding about the disorder. With this in mind, many parents have learned to ignore the comments (even though they do hurt) and/or have made efforts to educate those who will listen. That is my purpose for writing this article – not to whine and complain about unfair treatment, but to increase the awareness and familiarity of autism, and to help give others a better understanding of those affected by it.

NOTE: Included in this article are actual comments spoken from people who were misinformed about autism. These quotes were specifically sent to me by other parents of autistic children from various online support groups. (You would be amazed at how many comments I received, so weeding them down to a few was difficult.) Permission was granted to publish the comments; however, identifying names have been removed in order to protect the privacy of each one involved.

Comments Regarding Discipline
Autism spectrum disorders are neurodevelopmental in nature, and it is difficult for affected children to understand the environment around them. They have barriers in their brains that make it difficult for them to adapt to their surroundings. This may include (but is not limited to) sensory dysfunction, self-stimulating behaviors, lack of social skills, lack of communication skills and compulsive tendencies. Many people confuse the behaviors that result from these issues as a lack of discipline, which is not always the case, and should never be automatically assumed. Here are a few comments along these lines:

1. Tina says: After my son had a tantrum in McDonald's, an elderly couple asked me if he was ok. I replied “He's fine, he has autism and sometimes...” and in mid-sentence, they interrupted me and said, "That's nothing a good swift kick in the butt wouldn't cure.”

2. Veronica had a very close relative tell her, "He is not autistic, he is just taking advantage of you, can't you see that? His problem is simple, he is just SPOILT, that's all.”

3. Lynn says: My daughter was “acting up” one day because we were away from home and in a different environment. She may have been hungry or tired, but just didn’t know how to tell me. I was having a hard time getting her to stay calm when my dad’s sister (who was visiting from out of state) asked, “Would she listen better to her grandpa?” implying that my daughter’s behavior was due to a discipline problem and she needed a firmer hand to make her behave.

Comments Regarding Special Diets
Many children who have been diagnosed with autism or sensory processing disorders have dramatically improved after being put on special diets, such as gluten-free and casein-free (GFCF). Gluten is a protein found in wheat, oats, barley and rye. Casein is the protein found in milk products. Other diets, such as the Feingold Diet, include the removal of preservatives and artificial dyes. The limitations of these special diets are apparently confusing to many misinformed people. Some of the comments include:

1. Said to Laura - “Doesn't he starve?”

2. Said to Monica - "Maybe he won't talk because you won't give him the food he wants."

3. One mom shared that her son's school felt she was being abusive because her son was on a restrictive diet for autism. The school said it is unhealthy to deny a child fast food and candy like other kids get.

Comments Pertaining to Language Delays
Contrary to what some believe, the lack of speech in an autistic child does not mean the child is without intelligence. Children with autism do learn, and many can be successfully taught to function, when they are given appropriate therapies and treatment. Simply put, autism produces barriers in the brain which does not allow information to process correctly. A child with autism may actually understand what you say, but the barriers hinder the child from being able to respond appropriately. However, many autistic children can develop functional language and others can develop some type of communication skills, such as sign language or use of pictures. Those who are mildly affected by the disorder may exhibit only slight delays in language, but could have a greater lack in social skills. Therefore, he or she may not be able to initiate or maintain a proper conversation. Communication is often described as “talking at others” instead of with them. For example, they may continue to talk about a favorite subject without pausing, despite the attempts of others to interject comments.

1. Monica says: When strangers say “Hi” to my 4-year-old autistic son, I often tell them he cannot talk. Once, I got the comment, "Maybe he just doesn't have anything to say.” One lady actually said, "What did you do to the poor child?"

2. Said to Debi - "She can't be autistic. She's too smart."

3. Said to Laura - “Well, what did you expect. You let him point to an object to get his way - you should have made him talk.”

Comments Regarding Odd Behaviors
According to the Centers for Disease Control and Prevention, 1 in 88 children in the United States are now being diagnosed with autism (numbers published March 2012). With the way autism has increased in numbers in the last 10 years, I believe in the importance of making others aware of it. It is now considered an “epidemic.” Chances are, if a family member does not have autism, you will at least eventually run into someone who does. So, when that happens, please remember there is probably a reason why this child is “acting out” in some odd way. With sensory issues, compulsive tendencies, and lack of communication skills, these children are doing the best they can with whatever situation they are in. The parents, likewise, are doing the best they can to keep their child calm, happy, and secure in his world. Instead of making unnecessary comments, be kind and courteous. A simple smile or a pat on the arm can be more encouraging than you realize.

1. Laurel’s son refused to eat meat of any kind due to oral-sensory issues. Someone said to her, “Can't you just reason with him?"

2. Veronica’s son was 3 years old and attending his cousin's christening. Veronica says: He was enjoying the church's different space and trotting back and forth on the sides of the church. Not being noisy, just not sitting down. A staff member of the church came and asked me to control him. I said, “I can't, he's autistic, he is going to scream if I stop him.” (He would have). She told me to wait outside. This was the second time we had been kicked out of a church for family events.

For more information about autism, please check out these websites:

Autism Society of America

Autism Speaks

Focusing on the Positive in Our Children

+This month marks 11 years since my daughter's diagnosis of autism. She is now 13. I love my daughter dearly and believe, on most days, I have come to terms with her diagnosis. I have accepted who she is and have accepted that life for her (and us) will never be the "ideal." But, I have to be honest with you... that doesn't mean there aren't still days when I wish things could have been different.

One thing I have come to realize, however, is that many other parents have similar feelings regarding their own “typical” children from time to time. As parents, we ALL have hopes and dreams for our children. And, when those dreams don't become a reality, it is sometimes hard to accept.

For me, it is extremely difficult when I see other girls my daughter’s age doing the things a typical 13 year old would do. I wish she could relate to other girls in a way that would bring her invitations to participate in their social gatherings. For other parents, they may wish their child could be great in sports, just like “dad” was; or, be an excellent student; or, be the social butterfly that mom is. Maybe some are frustrated that their child is involved with something that is not the "norm" for their family. Or, maybe they are dealing with a disability that limits their involvement in the things their family loves to do. There are many scenarios of how us parents wish our children could be different. And, there are many times we feel guilty for thinking this way.

One thing to remember, when those feelings of sadness or disappointment show up, is the importance of not dwelling on them. Dwelling on the negative only brings discontent and depression. What I have been trying to do is acknowledge my feelings are real and that I don't have to pretend they aren't there. Then, pray and express my feelings to God, because He is always there to listen. But, don't dwell on them. After acknowledging your feelings and expressing them to God, give them up and begin thinking about the positive things - the blessings God has given you. You may be surprised at how many things you can think of! Above all else, TRUST in the Lord, and KNOW that He will never leave you or forsake you. 

If it wasn’t for the Lord holding my hand through every step of every day, I would not be as confident as I am in knowing that "God causes all things to work together for good to those who love God, to those who are called according to His purpose." (Romans 8:28)

In spite of any difficulties my husband and I face, I love my children dearly. They mean so much to me and are truly blessings from the Lord.

LOVE your children today, truly love them... for who they are, not for who you wish they could be. 

CHERYL'S STORY: You Deserve A Break Today

I had the privilege of reading this STORY last week on the blog of MANY HATS MOMMY (a.k.a. Jenny). I asked permission to share it with you, as I feel it is a good reminder to us all to be more open to the Lord’s prompting, and to try to understand how another person might be feeling in a difficult situation.

This true story is about a mom named Cheryl and her two boys on the autism spectrum. The oldest has Aspergers, the younger was severely damaged by vaccines and also has cerebral palsy. It took place about 14 years ago when Cheryl was two hours from home, dealing with her boys after a big disappointment. Her son, Eric, was 11 years old at the time. Her son, John, was 4.

The story is a bit longer than my usual posts, but it will definitely keep your interest! So, PLEASE.... take the time to read it! You won’t regret it...

You Deserve a Break Today

I walked out to the van where the boys were waiting with news about meeting Dad. Rain started to fall making a cold day even colder and my spirits as damp as the day. I knew Eric would be disappointed that his Dad was not joining us, and I was not looking forward to handling John alone in a strange place where nobody knew us. At least at home, even though people didn’t understand, they had grown familiar with seeing us around town. People who worked in the local restaurants knew us and had compassion.

I drove around looking at the layout of fast food restaurants. I knew I needed a place with a back door where I could come and go without John having to pass a crowd of people. I knew I needed to be in the back left alone to cope with John and not be bothered or bother others.

A McDonald’s fit our needs perfectly. Eric was not happy as his Dad had promised we would eat at Back Yard Burgers, but I knew that was not a place where I could slip in and out with John. I promised Eric he could still go there when we picked up his Dad and the two of them could go together. For now, I needed to feed John and pass some time

I went through the drive thru and placed our order, two happy meals, extra order of fries, nothing for me. My job was to hold and feed John.

“I thought we were going to go out to eat but inside!” Eric said as I pulled into the drive thru.

“We are, it’s just I can’t hold John, carry a tray of food, juggle paying and all, so this works best. We will circle the building, and go in that back door, sit down and eat. If we need something, we will be inside.” I spoke as I dug for change to pay the lady at the window.

This plan worked well for a few minutes. I managed to get both boys in and the food in one trip and find a table in the far back. To help John cope with the noise, lights, and general atmosphere, I placed him in my lap backwards so that his face was facing mine.

Eric sat across from us and kindly opened both Happy Meals and placed John’s fries and chicken nuggets in a location that was easy for me to reach.

Rain pelted the glass window beside us and I leaned back in the bench and breathed a sigh of relief. John was quiet, and eating one fry after another. Eric was happy talking endlessly about a book he had been reading and ideas he had. I felt normal and happy for a few minutes, like a normal Mom out with her kids.

I relaxed and looked around and then back down at John’s sweet face. I looked back at a happy Eric and thought to myself, this must be what it is like to be a Mom with normal kids out to enjoy the day.

It didn’t last long, our perfect world shattered when John ate his last French fry.

I tried to switch to chicken nuggets and he was having no part of it. He tossed his head backward and slammed it forward into my chest. His blow knocked the breath out of me, and the next sound I heard was John’s ear piercing scream as his head went back a second time.

“Fries, hand me fries NOW!” I said as I struggled to hold John back from falling back into me a second time.

“MOM, gosh, they are MINE! You said I could have extra! Make him eat his chicken, I ate mine,” Eric said as he handed me one fry.

“So help me son, this is not the time or place to argue over fries, I’ll get you more in the drive thru. But now I can’t move, and I have to keep John quiet in a public place. Come on, hand them over. Once he is quiet and no longer stiff, I can move and we will leave.”

John grew quiet and turned around in my lap once the fries were within reach. For a minute, things went back to happy. So happy, I grew confident that I could make a mad dash to the counter for more fries and maybe even a sandwich for myself. “Do you want to go order some fries?” I asked Eric.

“No, I can stay with John. We will be okay. He is happy, and I can feed him. You go get what you want.” Eric said as he reached for a fry to hand John.

I weighed the situation for a minute. It was a straight shot to the counter and back. If I timed it where there was nobody at the register, I might just pull it off. I stood up and stood beside the table. Eric’s plan was working; he was handing John one fry at a time, and John was taking them from him and eating slowly. I looked over my shoulder at the counter; the last customer was walking away.

I held my breath and started walking backward, eyes glued to the table, when I was about seven steps from the counter; I turned around and turned my back on the boys for the first time. No screaming. This was going to work! I was actually going to walk up to a fast-food counter and place an order alone!

My heart was beating fast, and I found it hard to breathe. Yes, I am a normal Mom. I can order food and pay for it and wait for and carry it……

I turned quickly when Eric yelled, “I can’t hold him!”

John had slid out of the seat and was on the floor. He looked like a puddle of jello, he was so limp. Eric was reaching under the table trying to catch John who was strangely quiet, but moving. John stood up and headed straight toward me. I leaned down and spread my arms to catch him, when out of nowhere, John reached up onto a table and pulled down a cheeseburger, took one bite and dropped it to the floor, all this without stopping and still headed right into my arms. I was horrified as the burger rolled across the floor. Now I knew why John had screamed at the chicken nuggets, he had wanted a cheeseburger.

The burger belonged to a well-dressed business man who had a news paper spread out on the table and was sipping coffee. Out of the corner of my eye I had seen him unwrap the burger when I was walking backward.

“I am so very sorry, I’ll pay for it.” I said breathlessly as I walked back to where the man was sitting. To my surprise, he was laughing, big hard fully blown belly laugh and shaking his head no. When he finally caught his breath, he reached up and touched my arm.

“I am sorry, I am not laughing at you or your son. It’s just he was so quick, and caught me off-guard, it’s nothing, really, I don’t want you do buy me one or pay for that one. I didn’t need it, I just bought it to have, my wife will be thrilled I didn’t eat it. You have your hands full, let it go. It made my day, I was stressed at work and came here for a break, and boy did I need to laugh. Thank you for making my day.”

He stood up and began to clean up his area. “Go on now, it’s okay, really, I need to get back to the office, and you, you need to get back to your son.” He smiled at John and chuckled again as he walked over to a trash can.

I slipped back into the booth with John in tow. I was embarrassed for having left John for a minute, and yet, knew if I had picked him up to carry with me to the counter, he would have screamed violently. It was a no-win when it came to trying to know what to do or not to do when you had to navigate the public with John.

“Mom, what about the fries?” Eric asked.

“You have got to be kidding me. Let’s just finish up. You eat John’s nuggets and we will do the drive-thru. We got off lucky, don’t press your luck son.” I said as I hugged John close.

I looked out at the rain and listened to John hum and thought about how lucky I had been that the man had been so understanding. Suddenly the silence of my thoughts was interrupted by an employee holding a tray full of food.

“Your order.” She said as she sat it down on the table.

“NO, NO, NO, not mine, quick before my son gets that!” I said to her.

She put her hand on her hip and looked a bit out done. “Listen lady, you are the only Mom with two boys back here. Now this is yours.”

“But I didn’t order it. I didn’t pay for it.” I argued as John reached for the tray and began to slap the food.

“Yea, I know. That man did, that guy in the suit. He said to tell ya, thanks for the laugh, and take time for yourself to eat, does that mean anything to ya?” She said as she started to walk off.

I bowed my head and whispered to nobody in particular, “Yes, it means the world to me.” This stranger, who had been watching us, saw I was not eating and had bought my lunch.

The tray contained two cheeseburgers, a coke, large order of fries and ice cream for us all. In one minute my faith in humanity was restored and I knew that no matter how hard the days, God had everyday angels watching over us. The rest of the day went smooth just because I knew, someone did care.

~Cheryl

Thankyou, Jenny and Cheryl, for allowing me to share this story. We may never know what a small act of kindness did for someone, but the receiver will remember it forever. .
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Significant January Event: Dealing With Guilt

Today’s significant January event came from ten years ago. On January 11, 2001, David and I found out we were pregnant with our 2nd child. Our daughter was 2 ½ at the time, and we had been trying for another child for almost a year. It was something we should have been thrilled about, but we weren’t. The joy of it had been stolen away due to the recent diagnosis of our daughter’s autism. We were still trying to process the load from that and, even though I tried to be excited about another baby, the thought of another child possibly having some sort of disorder made us both nervous.

Three days later, on January 14th, I miscarried that baby. Talk about a huge array of emotions that took place... Part of me was sad for the loss, a bigger part was relieved, but the biggest part was feeling guilty over feeling relieved.

Guilt. We’ve all felt it about one thing or another. Sometimes the guilt we experience is to make us realize the error of our ways. But, sometimes, its simply from a lack of meeting our own expectations. In this case, I expected myself to be grieving for the loss of this child when, instead, I was relieved.

What I eventually came to realize was, I was not really relieved we had lost a baby. Instead, I was relieved that God had decided the timing wasn’t right for us to have another child. It all depends on the perspective. Are you focusing on yourself, or focusing on God’s overall plan for your life?

The idea I’m getting at is to consistently seek God’s direction and determine WHY you are feeling guilty; and, if you are feeling guilty today, there is only one way to overcome it - stay in tune to the Lord and follow His prompting to do what HE is telling you to do. In other words, if you’ve done something wrong, then you are being convicted with your guilt and you need to set things straight - make amends with the person(s) you have hurt, and/or change your behavior. But, if your guilt is from your own high expectations, then lower them to where you are no longer having nosebleeds. Guilt in this case doesn’t come because you’ve done something wrong - it comes because Satan is trying to discourage you and lead you down the path of depression. Don’t let him win. Deal with your guilt TODAY.

God's blessings to you all!

A Significant Event: Our Daughter's Diagnosis

Happy New Year! I’m not normally one for making new year resolutions, and don’t really intend to start. However, I often use the newness of the year to reflect on years gone by, as well as wonder what the future has in store.

For us, the month of January has tended to be a month that hosts significant events in our lives. Not sure why, exactly, but it just seems to have worked out that way. One such event happened ten years ago today! Our sweet daughter, our firstborn child, was 2 ½ years old on January 3, 2001, when she was diagnosed with Autism. It was definitely a significant event in our lives. Not an easy event, but one that has changed our lives in a tremendous way; one that we will remember forever. I’d like to share an excerpt from my journal on that day...

January 3, 2001 - Our daughter had her appointment with a developmental pediatrician this morning. It’s not exactly very encouraging news. She has been diagnosed with a moderate form of Autism, or Autistic Spectrum disorder. Plus, she has Sensory Integration Dysfunction - which means she is very sensitive to certain sights, sounds and textures, making it hard for her to learn about the world around her. Doc suggested she begin seeing an Occupational Therapist soon, to help out with that. So, I set up an appointment with our Service Coordinator through Child and Family Connections. She will be out tomorrow morning to help us pick out a therapist.

David and I are taking this news a bit hard. I don’t know what all David is thinking because he is at work right now and we haven’t had much of a chance to talk yet. But, I know he is upset and wants to come home. We have both suspected autism for quite some time now, but it didn’t really hit home until the doctor said the word out loud. When she said the word “autism” my heart skipped a beat. Our fears had just become reality. I have been on the verge of tears through-out the day. I haven’t actually broken down yet, though. I guess I’m just trying to let the news sink in a bit. I’ve been keeping busy most of the day, to help keep my mind off of it, too. I just don’t know what I’m going to do. How will I take care of a child with autism? Doc gave us a long list of books that we can check into for more information. I guess I’ll have to start with a couple of them and go from there. It’s just really sad and frustrating to know my daughter has this disorder, and there’s no known cause or cure for it.... There is a good chance she will be able to adjust to this disorder so that others won’t even be able to tell she has it. But, there is also a good chance that she will never be socially compliant, and will probably never even have a serious relationship or get married. It’s really disheartening. As parents, we have so many hopes and plans for our daughter. We want her to excel as a student and as a person, and grow up loving the Lord and serving Him. We want her to one day fall in love, get married, and basically just be happy. I know that sometimes what we want for our kids is not what the Lord has planned. But, it still hurts.

I guess the main thing right now is that there’s so much uncertainty. We just don’t know how severe her disorder really is, and whether or not she will improve. We really won’t know until she is older. Doc said she will not get any worse, but she could get better. So, that’s what we’ll have to pray for. Hopefully, our daughter will be at the high functioning end of the autistic scale. But, if she’s not, we will still love her no matter what. She is our child, our beloved daughter, our flesh and blood. She means the world to us and we are glad she is here to brighten our days with her smile.

As I look back on that day and remember, I sometimes wish we had never had to experience it. But, at the same time, I know the Lord used this event to help my husband and I learn and grow in various ways; and, even though we have accepted our daughters autism and love her for who she is, we will never stop learning and growing; but, we will continue to trust the Lord to give us wisdom regarding her needs.

Being a Christian does not mean everything in our life will be perfect, but it does mean we can rely on the Lord to give us the wisdom and strength we need to get through it. With the wisdom that only God can give, our daughter has made wonderful progress over the years and has overcome many obstacles. She continues to improve and we feel so blessed to have her in our lives.

James 1:5 - But if any of you lacks wisdom, let him ask of God, who gives to all men generously and without reproach, and it will be given to him. (NAS)