Sunday, January 31, 2016

35 Years of Blessings

On the eve of my 35th birthday, I can't help but think how blessed I have been in my 35 years of life. It has had many trials. It has had lots of heartache with the loss of my first pregnancy, two children with autism, and a failed marriage that is ending in divorce. Nonetheless, God has blessed me and I am so very grateful! I have been blessed with an extremely supportive family who understands and "gets it" when it comes to autism. God has placed the right people in my life to help get my family where we need to be in order to provide the boys with the best functional life possible. With that said, we have been blessed with the best "Harsha" family!! God has blessed me with autism and I totally look at autism as a blessing. It is very hard and it breaks me every day but it is such a phenomenal blessing once you allow yourself to live the life that God gave you and to turn your heartache into joy.  So many blessings in my first 35 years of life that I can't possibly name then all. I hope God grants me many more amazing years with my two blessings, Trenton and Andrew.    

Here are the cutie patooties all tucked in bed....hopefully for the night!! Now that would be one awesome birthday gift:)


                                         

Friday, January 29, 2016

Sticker Chart

If it could go wrong, it went wrong for us the past 24 hours. However, in all of those trials that life throws at the boys and I, we had several things to celebrate. One of the things to celebrate was Andrew's sticker chart from pre-school!!! He rocked it out this month with some awesome behavior! I am so proud of him. He only had one day where he didn't get his sticker. This is the best it has been since he started school in September!! I am so proud of him and he was very proud of himself too!!

Thursday, January 28, 2016

Note

The Mighty published my story!!
This story would not have happened if it wasn't for a mystery person from Harsha Cognitive Center:)


http://themighty.com/2016/01/when-the-coach-of-my-son-with-autism-left-me-a-note-i-really-needed/

My Cause Matters

My Cause Matters have partnered with the Autism Society of America. They are having a 1/2 of every sale in their Autism Collection and bestsellers/new arrivals items will be donated back to this wonderful organization! They have some great autism items! Check them out!!!

www.mycausejewelry.com

Wednesday, January 27, 2016

How we roll!

This is how we roll everywhere....even church! We do not leave our dvds, giraffe, peekaboo animals, or play doh behind!


Tuesday, January 26, 2016

Mommy

It will never get old hearing your child say your name! I think most parents would agree. I am so blessed to have one extremely verbal child. SO BLESSED! I love hearing Andrew say my name daily.

Trenton is getting fairly good at saying my name at Hasrha. When he wants to go he will point to the parking lot and say, "Mommy" However, it is very seldom that I get to hear it spontaneously. Over the weekend, I was granted that privilege. He walked up behind me and said, "Mommy" and reached out for my hand. My heart melted! Totally melted!!

God is amazingly good folks!!! We have to hold on to that faith and hope:)


Sunday, January 24, 2016

The Difficulty of Stores & Restaurants

Right after I became a mother, I couldn't wait to take Trenton out to a store or simply anywhere to show him off. I was just so blessed and happy to be a mom. I wanted to cherish every moment and every adventure that I could. Needless to say, Trenton wasn't  the kind of baby that you could take places. He cried the majority of the time and that is no exaggeration. Even as a baby he cried the second I would step foot in a store....well we all know why now! He cried the whole entire time in the car and now I know that was his sensory processing disorder. Thankfully, as of now, he enjoys riding in the car and it meets his sensory needs.  Simply put, he cried all the time and we could never do anything from the time he was born.
The picture below is of Trenton and I. He was three months old and it was the first time he didn't cry walking into a store! I was so excited!! I had to get a picture!!! He was not crying and we were out of the condo. I was on cloud nine! However, that was the last time he was able to handle a store for a very long time.
 
 
I am beyond excited to report that Trenton and I worked on this challenge on Saturday and we were very successful!!
I took him to the restaurant that I have been taking him to for the past few years and he was great!!! I was so proud of him. In fact, when we sat in our booth, he typed pizza on his communication device and said pizza countless times!!



I was beyond proud of him!! It was very hard for him but he made it through and filled his belly up with his favorite pizza!! Of course, his giraffe and dvds went with us as well!
A simple act of taking your child to a store or a restaurant is often taken for granted by so many people. It is such a simple task, right? Well, it should be. Sadly, for many families like mine, it is often a nightmare that ends in hell. I am so thankful and blessed for our amazing time on Saturday!

Saturday, January 23, 2016

Financial burden of autism on a family

 When a child is diagnosed with autism, the family is suddenly hit with a full schedule of appointments, procedures and therapies. The gold standard level of ABA therapy alone is 25 to40 hours per week. Add to that speech therapy, occupational therapy, physical therapy, social skills groups, and when the child turns 3, special-needs preschool. .

The financial burden that autism puts on families is unspeakable! I don't discuss the financial part a lot because I don't feel comfortable doing so. However, there needs to be an awareness raised in this world about the cost of autism. Getting help for your child isn't life or death when it comes to autism but it is a matter of how functional of a life you want for your child. It is so sad that families who want the best for their child are forced to go into poverty in order to get the help their child needs. In 2015 alone, the cost of getting Trenton the help he needed was well into the 6 figure digits. That is not even college tuition for one year! Families of  "normal" children get that free education for their child and then send them off to college but I guarantee no one pays what we do for one year of college.  However, I am very thankful that I live in a country where I can get him the help that he needs.

The following is some really great information from www.myasdf.org


Today’s economy is rough on families around the country, but there are some who are impacted more than others. Having a child with autism is an emotional, physical, and fiscal feat. Parents of autistic children have additional expenditures that can turn a middle-income family into a low-income family in a matter of months. Unfortunately, poverty amongst families with an autistic child is growing in the United States at a rapid rate, and there are not enough government-funded programs available to assist them. Families with autistic children do have options and assistance, but from privately funded organizations.
The Financial Impact of a Child With Autism
Many people do not know the costs associated with raising a child with autism. According to the Centers for Disease Control, one out of every 68 children is diagnosed with a form of autism. The severe financial strain associated with the diagnosis does not help the fact that the families with autistic children generally earn 28 percent less than families with non-autistic children.
Typical costs for an autistic child include, but are not limited to:
  • The loss of one parent’s income: Autistic children require around-the-clock care and stimulation. Though this can be done by a caregiver, many parents choose to quit their job and stay home to care for their autistic child. In a two-parent family, that means one parent must shoulder the burden of earning enough money to support the family and the extensive cost of care.
  • Specialty schooling:  Children with autism often cannot attend the same classes or schools as non-autistic children. This is because they require different learning environments and instruction. Specialty schools, tutors, and teachers can cost families several hundred dollars per month—or thousands per year.
  • Special activities: It has been shown that specialized activities with other autistic children help those with autism learn to function in a non-autistic environment. These activities include special camps, swimming lessons, and social events, but these activities can be expensive. Parents can spend hundreds of dollars annually sending their children to these special events that are imperative for the social development of their child.
  • Special equipment: Autistic children require specialized equipment to learn. Recent studies have shown that iPads help autistic children relate to the world, learn, and socialize in a non-confrontational environment. Parents who wish to provide their child with an iPad can expect to spend upwards of $500 for the most basic model.
  • Lacking health coverage: Health insurance has not caught up with the times. Unfortunately, many health insurance plans exclude treatment for autism or outright refuse to cover behavioral-related therapy because it is considered “educational” rather than medical. By denying coverage, parents are left to pay these treatment costs out-of-pocket, which can be several hundred dollars per visit, and visits can occur several times per week. Occupational and emotional therapy, for example, costs an average of $150 per session, which parents must pay themselves.

Friday, January 22, 2016

Giraffe

 Some people on the autism spectrum engage in repetitive behaviors constantly, while others only occasionally perseverate when they're stressed, anxious or upset Perseverate means to have a preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus.

For many people with autism, though, perseveration or repetitive behavior is not only disturbing to others, but it's also a major roadblock to communication with others and engagement in the world.

Trenton perseverates on his dvds daily. However, this past week he went to Harsha without his dvds three days this week!!! That is because he is perseverating on the giraffe that you see in the picture below. The giraffe has went to bed with him, went Harsha with him, sat on the counter while he took a bath, sat on the table while he ate...it went everywhere with him!!

If he left it in another room and he realizes it he immediately starts making his upset noises and starts hitting. HE PANICS WHEN HIS GIRAFFE IS NOT NEAR HIM!!


Wednesday, January 20, 2016

Bye

One of the many difficulties about being away from your non-verbal/non-communicative child is that they can't tell you anything about what happened when you were apart.  With that said, it makes this momma so happy to see him smiling every morning when I drop him off at Harsha Cognitive Center. In fact, he can't wait for me to leave:) As soon as he sees his coach he has been turning to me and looking at me and saying, "bye" with no prompts!!!! It has been absolutely amazing to see him do that!! SO AMAZING! With that said, there are  no worries after I drop him off. I know he is in the best hands and even though he can't tell me what he did throughout the day, I know he must love every minute of it!! However, he is very happy to see me pick him up. I get the best smile ever almost every day! Just another sign that even though he can't tell me about his day, I know he had a great one and enjoyed it:) As always, I will continue to pray that he is blessed with the ability to communicate one day!!



Tuesday, January 19, 2016

Sensitivity & Mild Autism

There are numerous traits that go along with autism. Last week I posted a little about mild autism's social challenges. Today, I want to discuss sensitivity with individuals are on the high end of the spectrum.

Every child on the spectrum deals with sensitive emotions. However, it is much more evident with individuals on the mild end of the spectrum because they are able to express and show their emotions. Andrew is a very sensitive child. VERY SENSITIVE! He doesn't forget a thing either. If a person made him feel "sad" at one time, he remembers it and makes sure he reminds me of that situation from time to time, especially when he knows he is going to see the person who made him feel "sad".

The highly sensitive kids on the high end of the spectrum deal with the following:
  • asks lots of questions
  • complains about scratchy clothing, seams in socks, or labels against the skin
  • considers if it is safe before climbing high
  • doesn't do well with big changes
  • doesn't usually enjoy big surprises
  • feels things deeply
  • has a clever sense of humor
  • is a perfectionist
  • is bothered by noisy places
  • is hard to get to sleep after an exciting day
  • is very sensitive to pain
  • learns better from a gentle correction than strong punishment
  • notices subtleties (e.g., something that's been moved, a change in a person's appearance, etc.)
  • notices the distress of others
  • notices the slightest unusual odor
  • performs best when strangers aren't present
  • prefers quiet play
  • seems to read the parent’s mind
  • seems very intuitive
  • startles easily
  • uses big words for his or her age
  • wants to change clothes if wet or sandy
The items that I put in bold are Andrew to the "T".

It is getting more and more obvious in Andrew of his sensitivity. Yesterday while at Harsha, he was playing catching with a group of peers. The ball hit him on the head and he starting crying. He asked his coach to take him away from everyone because he wanted to be alone. After I picked the boys up yesterday, Andrew said on the way home, "Playing catch makes me sad Mom. I can't catch the ball."

His coach thought he got sad because he got embarrassed and that might be true. However, I also think Andrew got sad and wanted to leave the situation because he knew he couldn't catch the ball like some of his peers. He is very in tune to what he can and can't do lately. He is very sensitive to everything! Either way, it made my Mommy heart break to see him so sad about not being able to catch a ball like his peers.

I know many people who read this with no children on the spectrum are thinking, "All kids are sensitive. He is just 4. He will out grow that." And you might be right. However, kids with autism do not mature like neurotypical children. I have heard that kids on the high functioning level are more like 7 years behind their peers in maturity. It is obvious the older they get. I have seen it too many times in my teaching career. I know what to expect when it comes to the boys and it is not an easy road, not even for Andrew. In many ways, Andrew is going to have a much harder time growing up because he is mild and is very aware of his "challenges".

Andrew tells me many things daily that break my heart. I choose to not share them. However, take my word for it that he notices everything and is very affected by everything! He is a very smart little boy, probably more smarter than many kids his age.

Friday, January 15, 2016

Library

I was elated when Andrew wanted to go to the library today. I have such great and horrific memories from a year ago taking him there. I was desperately seeking any place to work on social skills with him. Andrew went a very long time refusing to go into the library. We have worked over the past 6 months of going into the library but not entering into the kid zone where his class is. Over the past several months, we have been in the library on numerous occasions working on feeling comfortable in that environment while Mommy picked out books. I am so blessed that he was ready to go to story time there today. We had a great time there and the story time ended with free play. Andrew was glued to the sand table the whole time during free play.


Colossians 3:15 Let the peace of Christ rule in your hearts

Thursday, January 14, 2016

Hats

Almost daily, I long for eye contact from Trenton. I was blessed with some amazing eye contact tonight and it all started with wearing hats:) He loved looking at himself in the hat. It was a great half hour!! He loved taking my hat on and off. So blessed to have had this with him tonight:)




I read a post from another autism mom a few days ago. She posted some great pictures of her and her child with autism. However, her post was about what happened before the pictures. She discussed how she has to be around her child 24/7 so he won't hurt himself or hurt others. She went on to talk about how he had a very long meltdown before his happy pictures. She discussed the difficulties of non-verbal autism and how people wouldn't believe what she went through before the pictures.
I feel like that lady daily!!!!
 I love these pictures of Trenton and I. We had a great time with each other but one hour before this, he cried his sad tears for 45 minutes. He cried continuously and would touch my hand while he babbled. I truly think he was trying to tell me what was wrong. Did he think words were coming out of his mouth and that Mommy just wasn't doing what he wanted? I don't know and I will never know.
His life is so very hard and I will continue to work for him daily! Keep up the good fight T-man!!!

"Andrew"

Trenton's coach showed Trenton a block that had Andrew's name on it. She said, "What's this say?" Trenton immediately said, "Andrew" and smiled  and started running around happy.

This melted my heart!!! I see a very special relationship growing between the boys. They are so lucky to have each other and I am so lucky to have them!!!




Wednesday, January 13, 2016

Introduction to Special Education

I've decided that besides educating on autism, I am going to start educating on special education as a whole. I had an advantage over many special needs parents because my bachelors is in special education. I wrote two articles for Autism Parenting Magazine  about special education that will come out in a few months. However, I would like to go ahead and do a little educating on here to help other parents who may not know what their rights are.

Enrolling your child with special needs into school is not easy for parents of kids with disabilities. Most of the time, the parents do not understand special education. I hope to help you start understanding that:)

Congress first enacted Individuals with Disabilities Education Act (IDEA) in 1975 because schools were ignoring students with disabilities. This act established a process for evaluating children with disabilities and providing them special services in order to meet their needs. Under IDEA the program that your child receives is determined through an Individualized Education Program (IEP).  Your child's future depends on how involved you are. The parent or legal guardian must understand and be actively involved in  order for your child to get the best education possible.

I understand that you may not have a clue when it comes to IEPs and meetings. However, just simply ask your child's teacher. Build a strong, firm relationship with your child's team and you will be just fine.  Trust me, your child's teacher wants you to ask questions and to be involved! I had the pleasure of having a fantastic teacher and team when Trenton was in Early Childhood. As many of you know that school is not appropriate for Trenton right now which is why we are concentrating solely on ABA.

It may be difficult but you need to have a broad understanding of special education laws. IDEA is for all states! Therefore, each state must adopt the IDEA laws and implement them.

IDEA was revamped in 2004 in order to ensure that children with special needs receive an appropriate education. In order for IDEA to do this they required the school districts to have certain requirements.  For example, the one requirement that I will talk about in this post is ELIGIBILITY.

IDEA defines children with disabilities as individuals between the ages of 3-22 who have one or more of the following conditions:
  • Hearing Impairment
  • Speech or Language Impairment
  • Visual Impairment
  • Serious Emotional Disturbance
  • Orthopedic Impairment
  • Autism
  • Traumatic Brain Injury
  • Deaf-blindness
  • Multiples disabilities
  • Specific learning disability
  • Other Health Impairment which may include ADHD
In other words, in order for your child to be in special education between the ages of 3-22, they have to meet one of the above and there must be evidence that your child's disability adversely affects his or her education.

Monday, January 11, 2016

Mild Autism's Social Challenges

I came across a quote the other day that said, "The difference between mild autism and severe autism is that  when you have mild autism your challenges are ignored and when you have severe autism your strengths are ignored." Wow....how true is that? I'm going to focus on the mild autism part of that quote today.
I can't tell you how many times I have heard, "Andrew doesn't look like he has autism." or "Andrew seems just fine to me."
I am here to tell you folks that he most definitely has autism, it is just MILD. The complete opposite of Trenton. The most common traits are the following:

  • Avoidance of eye contact
  • Staring at others
  • Unusual facial expressions
  • Abnormal posture
  • Inability to recognize changes in speech tone and pitch, which could change the meaning of what the person is saying
  • Speaking in a monotone voice
  • Intolerance for changes in routine
  • Lack of social skills
  • Difficulty starting or maintaining social interactions
  • Difficulty taking turns talking (dominates conversations)
  • Difficulty reading other people's body language
  • Advanced language skills for his age
  • Talking a lot about certain topics with which he has a preoccupation
  • Verbalizing internal thoughts
  • Delayed motor development
  • More interested in parts of items than the whole item
  • Hypersensitivity to lights, textures, tastes, noises and other stimuli (also known as sensory integration dysfunction)
As you can see, many of the symptoms for mild autism involve social relations. Andrew can most certainly fool people with this. Andrew can be perfectly fine with social interactions in his own home and when is around familiar people. Sadly, Andrew just like many children with mild autism, does not handle social situations in unfamiliar areas with a lot of stimulation, a lot of noise, lights, etc. On some days, Andrew isn't as preoccupied with objects or obsessions. When he isn't, his social interactions tend to be better. However, when he does have days where he can't get his obsessions out of his mind his social interactions are terrible.

I have witnessed Andrew in many situations over his 4 years and it is very heartbreaking to watch him in situations with a lot of stimuli. It still continues to be very difficult for him even now. This past Saturday I took him with me to an alumni event at my high school. Andrew appeared to be doing very well but he really wasn't. He was playing with a group of kids, one kid was his cousin who was his age. Andrew had a difficult time playing with them because he didn't know what to do. The kids ended up leaving him out because Andrew was so socially awkward at one point. Andrew started crying and said that he wanted to be by himself. When he is upset he wants to be by himself. I took him to a quiet place and tried to get him to talk to me. Andrew said, " I can't talk." This is Andrew's response when he is overstimulated and had too much. It broke this Mommy's heart to watch her child cry silent tears. I have heard several parents of kids with Asperger's and mild autism say that their child is unable to talk. Many children end up talking to their parents by writing things down. However, many are unable to express how they feel so they keep it buried inside.

Andrew had a difficult time entering into the small high school gym. He couldn't handle the lights, noise, and all the unfamiliar people. I worked with him for a long time to get him to enter into the gym to watch the game. He finally did with the help from Uncle Brian but it didn't last long. He wanted out and wanted to go home.
This is just one situation. Sadly, I have other situations like this where  Andrew's challenges are very obvious. Too often than none, it is so easy to see Andrew in the comfort of his own home and with loved ones to say that he appears to have no challenges. Unfortunately, with mild autism, the challenges get more evident as they get older and more heartbreaking for the Moms like me because instead of our children maturing with their peers, they simply don't.

People with Asperger's syndrome and mild autism are great in their regular environment. However, get them out of that and it is very devastating to them.



Friday, January 8, 2016

Finding My Path

Here is an article I wrote for Her View From Home. I landed a monthly contributor spot with this company. I will have articles published every second Friday of the month!!
I would love if you would open up the link and read! I get paid by how many times it is opened and read!!

Thanks so much!

http://herviewfromhome.com/finding-my-path/

Wednesday, January 6, 2016

I Love You Trenton

I dread Wednesday mornings. It is very difficult to get up and out the door by 7:30 AM for speech therapy. Actually, its brutal!

 What makes it so brutal?

EVERYTHING! When you are dealing with autism, everything is a battle. To make matters worse, Trenton cried and was terrible at speech! Honestly, some days I wonder if it will ever get better with him.

However, as we were leaving speech Andrew made it all better. He leaned over to Trenton in the van and did the best to give him a hug from his carseat and said, " I love you Trenton."

I told Andrew how awesome and sweet that was and he said, " I love him and you so much Mom."

I said, "Remember what you might have to do one day? You might have to help Mommy take care of Trenton."
Andrew says, "I will start taking care of him when I am 7. I will take care of him while you make the food, Mom."

                                    Lamentations 3:22-23
Because of the LORD's great love we are not consumed, for his compassions never fail
They are new every morning; great is your faithfulness.

Tuesday, January 5, 2016

First Day Back at Pre-school

Andrew was very excited to go back to pre-school today. When I was walking him into school, he said, " I hope I get a sticker today and can remember to be good."

When I picked him up from preschool he said immediately, " I didn't get a sticker. I fought with Mason. I couldn't remember how to be good, Mom."

I talked to him about what he did, etc. Then Andrew said, " It's so hard to be good sometimes Mom. I just can't help it."

Saturday, January 2, 2016

Animals-Dvds-& More

Trenton loves his animals lately! They go everywhere with us and are lined up all around our house:)



His animals and dvds even went  to Monicals Pizza with us today. Monicals is a restaurant that I have consistently taken Trenton to with my parents help for a few years now. It is always best to pick one or two places and to repeatedly try it. Some trips haven't been pleasant and other times he has let us eat. Today, he did great! We were all able to eat but once we were done eating, it was time to go.....no relaxing and talking with T-man!

 He had another sleepless night the other night. He actually took a nap during the day with all of his stuffed animals and dvds:)
 Yes he is in this picture somewhere:)
 Trenton is having a really good weekend! He is managing his "down-time" with no structure therapy the past few days very well. He has regressed with his potty training but he has actually used words! It all can't happen at the same time. When he goes up in one area, he tends to regress in other areas. (Very typical of autism.) Autism...such a mystery. Nonetheless, I enjoyed hearing him use words the past few days that he normally doesn't use spontaneous. For example, he said, "sit", "van", "sleep", and when  I pointed to Andrew and said, "What is his name?" Trenton said, "Andrew." I have asked this to Trenton several times and he normally says, "baby."