Proverbs 3: 5-6
Trust in the LORD with all thine heart; and lean not unto thine own understanding.In all thy ways acknowledge him, and he shall direct thy paths.

Friday, October 24, 2014

Stress

I know I get on here and rant about the stress of autism. My rants don't do it justice by no means. Its one of those things that you simply have to live it to fully understand. By no means do I expect anyone to understand. I wouldn't want you to understand fully because if you do, you are living it.

One area that I don't talk about a lot is the impact that raising two boys on the spectrum with one being severe does to the mothers health. I have always been a relatively healthy person. I had a major surgery at the age of 19 but other than that....I am healthy.

I have read several books written by autism families in a few of the books it has a parent battling cancer, another parent battling flu and constant sickness all the time, another parent in and out of the hospital for anxiety, etc. I am confident that the cancer, anxiety, and ongoing sicknesses of these parents was brought on and induced from autism. I read those books never thinking it would be me....but it is. Which is why this is important to blog. Not to blog about my own health because I want sympathy...but because its part of the journey.....its part of autism......unfortunately.

There is a youtube video that shows a doctor talking about autism on the news. This doctor stated that having a child with severe autism is the worst disability a parent can have their child diagnosed with. He is a doctor who specializes in various child disabilities. Many parents health fails when raising children on the severe end. In the past three months I have been in the ER twice with one hospital stay. I have seen several doctors with numerous test ran on myself. Would I be having my problems if it wasn't for raising two boys on the spectrum with one being severe? I really don't think so!

I am now on medicine to help my heart rate regulate correctly because due to the ongoing stress, my heart does not beat right. I am now on medicine for anxiety so I don't have any more panic attacks. I wonder why?

In a survey of 219 parents of children with autism, Sharpley, et al. (1997), found that more than 80% reported sometimes being “stretched beyond their limits,” with mothers reporting higher stress levels than fathers.   The authors commented that the three most stressful factors are “(a) concern over the permanency of the condition; (b) poor acceptance of autistic behaviors by society and, often, by other family members; and (c) the very low levels of social support received by parents.” Subjective parental pain and consequent stress went unobserved.
When Dabrowska (2010) administered the Questionnaire of Resources and Stress (QRS) to 162 parents of preschool children with autism, she correctly predicted that the level of stress would be higher in parents of children with autism than in parents of children with Down’s syndrome or in typically developing children. Parents of children with autism also scored higher than Down’s parents on three QRS scales (e.g., limits on family opportunities), and higher than parents of typically developing children, on nine out of eleven scales. As well, she found that mothers of children with ASD felt more stress than fathers, but, interestingly, she did not find this problem in either the Down’s or the typically developing population.
Estes et al. (2009) investigated how child characteristics influence maternal parenting stress and psychological distress. Participants were mothers of preschool-aged children with ASD and mothers of children with DD (developmental delay without autism). Evidence for higher levels of parenting stress and psychological distress was found in mothers in the ASD group, and children's problem behavior was associated with increased parenting stress and psychological distress in mothers in both groups.

My body can't relax at all...NEVER! The first time I feel any small bit of weight off my shoulders is when Trenton is sound asleep in bed. Even at that, its nothing like a normal child because I have to worry about his wandering issues and escaping in the night. So there is never time to relax. If I am lucky and he is in bed before 8, I still can't sit on my couch and relax. I have to pick up the Hurricane 5 destruction and make the house look presentable for  the start of the next day. Then, I have to get to bed ASAP because I never know if my day starts at midnight, two, or four AM. So I am on guard with high anxiety 24/7......again...we wonder why my health has declined along with many other autism moms.


Sources of Stress for Parents

Deficits and Behaviors of Autism.  Research indicates that parents of children with autism experience greater stress than parents of children with mental retardation and Down Syndrome. (Holroyd & McArthur, 1976; Donovan, 1988). This may be a result of the distinct characteristics that individuals with autism exhibit. An individual with autism may not be able to express their basic wants or needs. Therefore, parents are left playing a guessing game. Is the child crying because he/she are thirsty, hungry, or sick? When the parent cannot determine their child's needs, both are left feeling frustrated. The child's frustration can lead to aggressive or self injurious behaviors that threaten their safety and the safety of other family members (e.g. siblings). Stereotypic and compulsive behaviors concern parents since they appear peculiar and interfere with functioning and learning.  A child's deficits in social skills, such as the lack of appropriate play, are also stressful for families. Individuals lacking appropriate leisure skills often require constant structure of their time, a task not feasible to accomplish in the home environment. Finally, many families struggle with the additional challenges of getting their child to sleep through the night or eat a wider variety of foods. All of these deficits and behaviors are physically exhausting for families and emotionally draining. However, in families of children with autism this is a challenge. Scheduled dinner times may not be successful due to the child's inability to sit appropriately for extended periods of time. Bedtime routines can be interrupted by difficulties sleeping. Maladaptive behaviors may prevent families from attending events together. For example, Mom might have to stay home while Dad takes the sibling to their soccer game. Not being able to do things as a family can impact the marital relationship. In addition, spouses often cannot spend time alone due to their extreme parenting demands and the lack of qualified staff to watch a child with autism in their absence.
 
Reactions from Society and Feelings of Isolation. Taking an individual with autism out into the community can be a source of stress for parents. People may stare, make comments or fail to understand any mishaps or behaviors that may occur. For example, individuals with autism have been seen taking a stranger's food right off their plate. As a result of these potential experiences, families often feel uncomfortable taking their child to the homes of friends or relatives. This makes holidays an especially difficult time for these families. Feeling like they cannot socialize or relate to others, parents of children with autism may experience a sense of isolation from their friends, relatives and community.  Concerns Over Future Caregiving.  One of the most significant sources of stress is the concern regarding future caregiving. Parents know that they provide their child with exceptional care. They fear that no one will take care of their child like they do. There may also be no other family members willing or capable of accomplishing this task. Even though parents try and fight off thinking about the future, these thoughts and worries are still continually present.  Finances. Having a child with autism can drain a family's resources due to expenses such as evaluations, home programs, and various therapies. Because one parent might give up his or her job because of the caregiving demands of raising a child with autism, financial strains may be exacerbated by only having one income to support all of the families' needs.   Feelings of Grief. Parents of children with autism are grieving the loss of the "typical" child that they expect ed to have. In addition, parents are grieving the loss of lifestyle that they expected for themselves and family. The feelings of grief that parents experience can be a source of stress due its ongoing nature. Current theories of grief suggest that parents of children with developmental disabilities experience episodes of grief throughout the life cycle as different events (eg. birthdays, holidays, unending caregiving) trigger grief reactions (Worthington, 1994). Experiencing "chronic sorrow" is a psychological stressor that can be frustrating, con fusing and depressing.


Philippians 4:19
 But my God shall supply all your need according to his riches in glory by Christ Jesus.

Thursday, October 23, 2014

Sunglasses

On the way to ST & OT Wednesday morning, the sun was very bright! It was shining real big in Andrew's side of the van. As soon as the sun hit him, he said, "Bright. Need sunglasses."
Mommy gave him her sunglasses....he is much cuter in them than Mommy!


Asleep!

I love it when they both fall asleep at the same time!!! I just wished they would go to their own bed and fall asleep but I will take what I can get!


Tuesday, October 21, 2014

Pictures from Harsha

Harsha was able to get some great pictures of the boys the past few days!










When Nana and I picked the boys up today, Andrew said, "No home. I want more school." It was so cute!! They are so happy there and I am happy that they are so happy!! 


Proverbs 3: 5-6
Trust in the LORD with all thine heart; and lean not unto thine own understanding.In all thy ways acknowledge him, and he shall direct thy paths

Andrew Update

Here are a few updates on Andrew....

Andrew continues to show small improvements in his speech. He can say a lot of spontaneous things but he continues to repeat a lot of language as well. On some days the repeating is worse than other days.
Andrew LOVES Harsha! On days that he does not attend, he always asks to go. (We call Harsha, school.) Andrew says, " I want school" all the time! When I tell him we don't have school, he gets really disappointed but adjusts well to the rest of his day.

Andrew's sleep has improved a lot over the past months. He no longer wakes up in the night for an extended time period. Usually once or twice a night I hear, "Mommy! Mommy!" in the monitor. I go in his room, he takes a drink of water, and he is usually back to sleep a few minutes later. As bad as I hate being woke up by an almost three year old in the night still....I do love to hear him say my name:) It is so cute to hear him say my name.  I never take it for granted. I do hope and pray that one day I can hear Trenton say it over and over!

He still continues to go through periods where his OCD takes over and controls his days. On some days, I am the only one that can do anything with Andrew such as brush his teeth, change diapers, play with him, etc. On other days, he only wants Daddy, Nana, or Pop. If he does not want you, he will scream and say "No" over and over. It truly upsets him. In his mind he has to have the person that he wants or he goes into a huge tantrum and breakdown.

I see a change in his social play lately. He no longer imitates everything another child is doing when he is around them. However, he is very socially awkward. He likes to stand back and watch the other kid for awhile. He will walk up to the child, but Andrew will take his hand and hit the child or push him. I am not sure where this is coming from. When he is redirected and told that we don't hit other kids, then he starts imitating the actions of others. He really does have a long way to go with this area.

Andrew continues to do well at Harsha. His main goal at Harsha is to promote functional, spontaneous speech. He does well and works hard daily to meet his targets. When I received his report the other day I smiled when I read where Andrew colored a picture and said it was for Mom!

Andrew continues to receives speech and occupational therapy on Wednesday and Thursday! He does great and loves his therapies as well! I am not sure what we would do without our Harsha coaches and therapies!!  Mommy, Andrew and Trenton loves them all!!  We consider them part of our family!!

Keep up the hard work Andrew! Mommy loves you and you are a precious gift from God!





Saturday, October 18, 2014

Trenton Update


It amazes me of how different each and every person is with autism. What amazes me the most, is the difference between mild and severe. If one would really like to see this Momma get on a tantrum then ask my opinion of the high rate of autism. What do you mean you might ask? Well, I believe what one very knowledgeable doctor told me..."Cases like Trenton who are on the severe end are not 1 in 50...they are more like 1 in 500, maybe even 1 in 5000. There is much more milder cases than severe."

In my first two years of my autism journey almost every mom I met told me that it gets better as he gets older. Well, it is not getting better. In fact, it is getting worse. Yes he can repeat a word and if you ask him his colors, shapes, letters, numbers, animals, etc he can say the single word on a good day. But does he have functional speech? NO! Can he say help when he needs help? NO! Can he randomly say "mom"? NO! He does not have functional spontaneous speech at all. However, he did spontaneously say "Jenny" this week. She is one of Trenton's teachers in the ECE classroom!! This was fantastic to hear that he did that!!

He is getting worse to take places due to his aggressive, impulsive, hyperactivity. Each and every therapist that he sees on Wednesday and Thursday has noticed it and is very worried about him. He cries, kicks, hits, throws items during his therapy sessions. My conclusion is that he is getting a little more aware of what he can and can't do. Therefore, he is trying to get out of the task....which is very typical of autistic kids. I remember studying and learning all about this during my college years.
His sensory processing disorder is worsening. His whole body is wired completely different than ours and as he gets older, he can't control his body. Unfortunately, in many cases of severe autism it never gets better...instead...it gets worse. I really do fear this. It pulls at my heart strings each and every day.

I received Trenton's monthly report from Harsha. They are tracking his maladaptive behaviors which appear to have multiple functions.  Trenton has many targets that he works on there which falls in the categories of communication, instructional control, listener response,motor imitation, and social.  These are very hard for Trenton and he works hard every day while he is at Harsha.

I would have to say the biggest improvement in Trenton since starting at Harsha is holding my hand, which we call "Safety hands". They work real hard with Trenton on this and it is helping! He will hold my hand with no problem walking into Harsha, school, or therapy. My goodness....he even held my hand at the walk last weekend! I could not be more pleased with this!
With autism, our joys and triumphs are a far cry from the neurotypical child. On most days, I totally forget what Trenton should be doing at his age if it wasn't for autism. When I see something that reminds me, I am left in total shock and totally depressed. Both my boys were robbed in this life....and it sickens me every day to think how hard their life is.

Mommy did get some smiles when we played with some bubbles this morning!!





More smiles playing "blast off" with Daddy!

Friday, October 17, 2014

Potty!


Andrew is showing a few signs of being aware of the potty. Now, how in the world do I find time to potty train him when I have to be by Trenton's side 24/7??? Any advice would be appreciated!!! It is going to be extremely tough to potty train Andrew due to his autism. However, he is finally not screaming at a toilet and not kicking at it anymore. YAY...this is progress!!
He peed on the potty the other day. Mommy did a happy dance and he loved it!


Andrew gave the rest of his breakfast to Sulley the other morning and then lined up our chairs in a line with Sully.


Trenton continues to fall asleep anywhere and everywhere. However, he has slept really good this week!! YAY!!!