September 9, 2016

Marley was mainstreamed !!!

At her IEP meeting back in March the child study team let me know that they wanted to mainstream Marley in the fourth grade. At first I wasn't too sure about her being mainstreamed, but after I thought about it I realize that she needed to move on. While the program is phenomenal in our school district, I feel that at times it hinders her maturity. I understand that a child with special needs has to have certain opportunities be made a little more easily available, but at the same time it also makes her think that she's entitled to other things. She thinks everyone is going to cater to her.  
Marley is on the spectrum so while she may have developmental delays she has no cognitive delays. She is, for all intents and purposes, a nine-year-old girl. I think mainstreaming her in a regular classroom, with a lot of support, is a very good idea for her.  
We tried to give her a heads up as much as possible. But how much can you explain to a nine-year-old that things are going to change. Her teacher called me on the first day to let me know that she did well with the transitioning. But she also mentioned that during recess Marley was alone. A little girl came up to ask her if she wanted to play but Marley let her know that she needed some time alone to regroup. I was very glad that she was able to verbalize how she was feeling internally.
I don't want it to be where it's so overwhelming for her that she needs a break and loses out on recess. It's only the third day today so we will have to see how she does during the day today. Next week will be the true determination of how she's doing because that's when they start with homework. And she loves her homework! LOL

Pizza night !!!
First day of school.

September 3, 2016

Marley was hit with Lyme again!

Yup. It's true. 
She was reinfected with Lyme. Since the middle of May she had been sleeping a lot. She was taking naps during the day and would spend most of the weekend inside the house. I was suspicious that something was wrong and asked my husband to take her to the doctor. This was the middle of June, after school finished for the summer. He is a teacher so he had the same vacation as her. 
The blood was drawn without a problem. Sure enough, she tested positive again. The doctor explained the results to me but it wasn't too clear for me. The way she was describing the results sounded like this was 'acute' all over again. Which means it just started and is new. 

Use your bug spray!!! These little suckers are dangerous!!!

I'll be back soon!!! 


October 28, 2015

Quick update !

I wanted to jump on real quick to give an update.  Marley and I have both been undergoing treatment for Lyme disease.  I am happy to say that Marley kicked it's butt !!!! It took two rounds of antibiotics, but she is now feeling much better. 
I also was able to defeat Lyme, but the parasite, Babesia, decided to stick around a little longer.  I have been on antibiotics, antimalarial and antiprotozoal medications.  I have been exhausted, to say the least.  The past few weeks have been a little better with the exhaustion but I still have the stomach issues associated with this disease and also the medicines.  
I am grateful that my family and I have the means to be able to treat this and live the rest of our lives happy and healthy! I appreciate all the support my family and friends have extended out to us. Sometimes just being able to vent about how awful I felt was enough to alleviate any discomfort I had.  

Love to all,

July 21, 2015

Lyme disease hit us !!!

I haven't posted in 3 months. 

I was too tired.

I had brain fog.

Body aches and pains. 

Thought I was lazy and unmotivated. 

On June 22, 2015, Marley had a fever. Nothing tangible, no sore throat or any skin eruptions. Lasted 3 days.  Doctor couldn't figure it out either.  Figured it was just her body fighting something off. Fever broke on June 25th. No biggie. 
But on June 28 we were at a friends birthday BBQ and it suddenly came back for two days!!! And went away again! Weird......but, ok, her body is fighting off a stomach thing. So I thought. 
On July 3 Marley woke up covered in a strange looking rash. They looked like bullseye's!!! She was covered in them. She looked like a giraffe!!!!!!!

Just one side of her arm

On one side of her back

told hubby to take her to the doctor, but everyone thought I was over reacting. 


But I was also brutally tired and thought maybe I was being over sensitive. After all, who gets bit by so many ticks!!! Figured it was an allergic reaction to mosquito bites. Gave her allergy medicine. Didn't work. Ugh!!!!
So on July 6, off to the doctor she went with Bob, I was at work.  

Sure was Lyme disease. I felt like someone kicked me in the gut.  Treatment started that day. 

Meanwhile, I was feeling very off the last few months. I went to a new doctor on July 2, 2015 and she was actually interested in what I had to say. She didn't dismiss my extreme fatigue. Or my muscle pain. Or my joint pain. Or my quick onset severe headaches. She even asked me questions about other symptoms I've had and have been diagnosed with other ailments. Hmmmmmm.......I felt like she was onto something.  
She decided to give me a slew of blood tests and some where for immunologic disorders, and others for Lyme and its co-infections. Ummmmmm...ok, whatever that means.
On July 9, the other shoe drops (on my 12th wedding anniversary, no less) ... I also have Lyme disease. And one of its buddies, the co-infection Babesia. Because when I do something, I do it right!!!!! Ugh! Turns out Babesia is a parasite that lives in red blood cells. Wonderful. Treatment started that day!!!

I also discovered that my neighbors 19 year old daughter has Lyme disease. She was diagnosed 2 weeks before Marley. Obviously something is going on in my neighborhood. 
Bob decided he needed to get tested also. Because Bob is the one that mows the lawn, he continuously finds ticks on himself. On July 20th Bob was also tested for Lyme and its co-infections. 

I am happy to know that I am not lazy or unmotivated. I am ill. I plan on being very aggressive with my Lyme and Babesiosis. Marley's Lyme was caught quick enough that I think 2 rounds of antibiotics will get everything. Me, on the other hand, have been feeling crappy for a long while. The doctor did tell me that my treatment will probably take from 3 -6 months.  I don't care how long it takes, I just want those buggers out of my red blood cells!!!!! 

I will update on here about how this is affecting Marley's autism also.  I'm hoping it doesn't, but we shall see. 
I hope my ramblings didn't bore you all, but I did promise I was back and I go on and flake out.  If any one has questions please ask me. Or even any information on the co-infection.  

Don't forget that I also have the sensory toys and book links on the side if you need for your child(ren) or yourself.  I would greatly appreciate it. ❤️😘😍

Love and good health to everyone !


April 22, 2015

Eating and feeding time with children with autism.

5 months old
Can't handle the cuteness !!!

Kids with autism usually are very particular about what they eat. Most of the time I feel it's because of sensory issues in their mouth, and because of this some of them do limit what they eat, sometimes so severely, that it could result in nutritional deficiencies.

When my daughter was born she was never a hungry child. I remember when Marley was few weeks old she fell asleep for five hours and did not wake up to eat. I actually had to wake her up to eat. Being that she is my first child I thought it was normal, but I soon discovered that it was not. At this age children usually wake up every 2 to 3 hours to feed, and they are very hungry.  She never finished the appropriate amount of formula for her particular age. I tried breast-feeding but she would not latch on. I later found out, through Marley's neurodevelopmental pediatrician,  that children with autism have difficulty latching onto breast-feeding. What I was able to do was pump what I had, and supplement with formula.  
When I tried feeding her solid foods she only took to it because I practically shoved it in her mouth. Each mouthful sent shivers up her little spine and she would always wince and shudder.  Usually children by five months are reaching for the spoon with their mouths when they see the food. Marley just sat and looked at it.  As the months went on she started refusing certain foods. I did not know what to think at that point. By the time she was a-year-old she was eating scrambled eggs, mac & cheese and applesauce. Not very balanced!  It got so bad that I had to put her on Pediasure twice a day. I was so afraid of her being malnourished. 
Even though as a baby I introduced all sorts of foods to her, she refuses to eat anything now. I made sure that I gave her plenty of vegetables so that her taste buds can acquire a taste for them. But to no avail. The only vegetable she likes is cauliflower and broccoli with cheese on it. And even with that she gives me a hard time. Of course I received all sorts of advice from the pediatrician.  I've tried the whole 'let her starve and she will eat' but that process does not work with a child with autism. I've been advised to hide the healthy food in what she likes to eat. Sure, I can try to hide some brussel sprouts in her 'spaghetti with butter' dinner!  She'll NEVER realize it...lolol!!!

Faking it for the camera!!! Doesn't even like the smell of apples.

And I can also say that my daughter does not eat any fruit. A person would think at least fruit she would eat because it was sweet.  Each time I approach her with a banana, she gags!!! A true visceral reaction to fruit!

With the foods that she does eat, she is particular. She does like chicken, red meat and pork. But they have to be cooked a certain way, and cannot have any char on them.  She will make her father cut it off.  The rice and the mashed potatoes have to be a particular texture.  

I do get very frustrated with her eating.  My mother always told me that as a young chid I would eat whatever she put in front of me.  I have to stop myself and think 'how would I feel if someone was trying to make me eat something that grossed me out?'  Her sensory issues dominate her every day.  She is still learning coping skills on how to handle being over whelmed.  That's not easy when EVERYTHING overwhelms her.  Something as simple as too much salt on her food would be the sensory equivalent of me drinking straight up sea water !!! 

Unfortunately there isn't too much research on this. A lot of times the families get blamed for the child's behavior. I do know that once I accepted the fact that this could be sensory it has been a little easier on us. I'm not as demanding on her. I do sometimes try and figure out a way to make the food more appealing to her senses. Every time I do bring it up to any professionals, whether it be her pediatrician or our personal therapist that we go to, they all seem to not have any real answers for us. Most of them seem to say "when she's hungry she'll eat". I really can't speak for most other people who have autistic children with eating situations, I can only speak for myself and my daughter. But I wholeheartedly feel that the reason they are so picky is because of 

1). the texture and the feeling of the food in their mouth because of the sensory issues
2). gastrointestinal distress 

Sometime she does complain about her belly hurting after she eats her food.I am gluten-free so it is easy to put her on a gluten-free diet and she doesn't really like milk or milk-based foods so casein free is relatively easy for her.  I am certainly not one to say that a GFCF diet will 'cure' my child.  But I do believe that when I make her as comfortable as possible, her behavior improves.  I feel its because when she isn't as physically uncomfortable she is less frustrated.  It's difficult for her to express what her body feels into words.  Although her communication has improved, she still has a difficult time explaining and describing her internal feelings.  She still has some difficulty with self regulation so at times she knows she is uncomfortable, but doesn't realize where it's coming from. 
I am certainly no expert on this subject matter.  I only have my personal experience with eating 'situations'.  

There are feeding professionals and feeding therapies available, but I don't feel it's necessary for me to bring Marley to one just yet.  I think for her, with a lot of patience, she will be able to let me know what foods are acceptable for her and hopefully help me prepare foods and meals that she can tolerate.  Until then, she will continue with the Pediasure.  She enjoys the flavor and is one of the 'foods' she actually requests. I will probably worry about her nutrition for quite a while, but It will get better.....I hope.  

Now that I am back I plan on posting every other Wednesday.  If you have any suggestions on what you want me to write about, let me know!! I would love to hear from you!

April 8, 2015

I'm back !!!

Well, I'm back. Thanks to a friend of mine that I've known since third grade. He's the one that gave me the kick in the pants.  Thanks Jay!!!!
I haven't blogged in a few months. Sometimes life gets in the way!!! As you may have already noticed, I've done some updating and I changed the name of my blog. I feel the new name gives my blog more definition. My daughters mind is the most magical place I've ever witnessed.  
Not much has really happened since my last post. Routine in my house is so strict that I get into autopilot. In some ways it's good because I always know what's going to happen next.  But in other ways it gets a bit stifling. And when things get monotonous the brain shuts down! 
I did get laid off in the beginning of the year and we got a dog. A lab mix named Luna Belle. Those are pretty major changes for a family that has an autistic member.  The lay off really didn't affect her very much because I was always home by the time she got off the school bus.  And I was the one that put her on the bus in the morning.

The new dog, on the other hand, was a pretty big change.  Marley didn't take to Luna as we had hoped. Luna was from the Monmouth County SPCA. Her name was originally Sallie. She was almost 3 months old and had a cone on. The volunteers told us that she had a slight infection on her belly. She was originally from South Carolina and had arrived a few days before we met her. She had the sweetest face and the best disposition. We fell in love right away. What we didn't realize was that Marley had a preset notion of what she wanted and expected from having a dog. She expected the dog to be calm and automatically understand all commands. Her only experience with dogs was with our neighbors Shi-tzu, Spike. Spike is 7 years old, calm and already fully trained with commands. Luna was 3 months old, sweet but hyper. Luna would get over excited and try to jump on Marley because she wanted to play. Poor Marley had to endure about a week of Bob and I training Luna to not jump on anyone, especially Marley, when she became excited. The training worked, but now Marley had a bad taste in her mouth! Luna is very sweet, eager to please and very intelligent. I think once Luna learns to calm down and Marley learns how to handle Luna, it'll all work out. 
Luna Belle

January 25, 2015

Article from March of Dimes.

Following is an article from March of Dimes that I found interesting and wanted to share.

It's from 2012 but it does have some basic information


Autism spectrum disorders (ASDs) is a group of conditions that affect how a child functions in several areas, including speech, social skills and behavior. Symptoms of these disorders vary greatly and range from mild to severe.

There are three main types of ASDs (1): 
  • Autistic disorder (also called classic autism): Affected individuals often have severe speech, social and behavioral problems. Sometimes individuals also have intellectual disability. 
  • Asperger syndrome: Affected individuals have milder social and behavioral problems than individuals with autistic disorder. They usually have normal speech and intellectual abilities. 
  • Pervasive developmental disorder not otherwise specified (also called atypical autism): Affected individuals have some symptoms, often including speech and social problems, but not enough to be diagnosed with classic autism. 

The American Academy of Pediatrics (AAP) recommends that all children be screened for ASDs at their regular medical checkups at 18 months and 24 months (2). Early diagnosis and treatment can greatly improve the outlook for children with ASDs.

How common are ASDs?

ASDs may affect about 1 in 110 to 1 in 150 children in the United States (3, 4). This means there may be more than 650,000 children in this country who have some symptoms of autism (4).

More children than ever are being diagnosed with ASDs. The rates of children diagnosed with ASDs have risen dramatically since the 1980s; between 2002 and 2006 they increased 57 percent, from 6.0 to 9.4 cases per 1,000 (3). Much of this increase may be due to improved awareness and changes in how ASDs are diagnosed. 

What are the symptoms of ASDs?

Each child with an ASD is unique. Common characteristics and behaviors include a child who (1, 5): 
  • Does not speak (about 40 percent of children with autistic disorder do not speak at all) 
  • Repeats words 
  • Performs repetitive movements, such as hand-flapping 
  • Doesn’t play “pretend” games 
  • Is overly active 
  • Has frequent temper tantrums 
  • Avoids eye contact 
  • Has difficulty starting and maintaining conversation and making friends 
  • Does not respond to being called by name 
  • Insists on keeping the same routine 
  • Repeats actions again and again 
  • Focuses on a single subject or activity 
  • Wants to be alone 
  • Is overly sensitive to the way things feel, sound, taste or smell 
  • Dislikes being held or cuddled 
  • Has sleep disturbances 
  • Lacks fear in risky situations 
  • Has some degree of intellectual disability or learning problems 
  • Is aggressive 
  • Hurts himself 
  • Loses skills (for example, stops saying words he used to say) 

When is an ASD diagnosed?

A child with an ASD usually does not look different from other children. He may appear to develop normally for the first year or so of life. But during the second year, some children with an ASD begin to fall behind in social skills, fail to develop speech, or even lose skills that they had previously acquired. An ASD is often diagnosed around age 3; however, subtle signs of the disorder may appear before 18 months (2). These signs may include (2): 
  • Not turning when the parent says the baby’s name 
  • A lack of back-and-forth babbling with parents starting around 6 months of age 
  • Late smiling 
  • Not looking when a parent points and says, “Look at…” 

Toddlers with these signs do not necessarily have an ASD, as each child develops at a different rate. However, parents should discuss these possible signs and other developmental concerns with their baby’s health care provider.

Speech delays can be early signs of ASDs. AAP recommends an immediate evaluation for ASDs if the child (2): 
  • Does not babble, point or use other gestures by 12 months 
  • Does not say any single words by 16 months 
  • Does not say any 2-word phrases by 24 months 
  • Loses language or social skills at any age 

How are ASDs diagnosed?

There is no specific medical test to diagnose ASDs. Health care providers generally diagnose ASDs by observing a child’s behavior. They also use screening tests that measure a number of characteristics and behaviors associated with ASDs. If a screening test suggests a possible problem, the provider may do additional tests or recommend evaluation by a specialist. 

Who is at risk of an ASD?

ASDs occur in all racial, social and educational groups. Boys are about 4 times more likely than girls to be affected (1). Siblings of an affected child may be at increased risk of ASDs, though the risk appears fairly low at 2 to 8 percent (1, 2).

Recent studies suggest that premature babies may be at increased risk of symptoms associated with ASDs (6, 7). A premature baby is a baby born before 37 completed weeks of pregnancy. Some of the increased risk is because of the higher rates of problems associated with premature birth (7, 8, 9). These problems include: 
  • Pregnancy complications, such as preeclampsia, a pregnancy-related form of high blood pressure 
  • Newborn health problems, such as brain bleeds 
  • Lasting disabilities, such as cerebral palsy, intellectual disabilities, and vision and hearing impairments

What causes ASDs?

We don’t really understand the causes of ASDs. But scientists do know that autism is not caused by poor parenting or other social factors. It is a biological disorder that appears to be associated with subtle abnormalities in specific structures or functions in the brain.

Genetic and environmental factors appear to play a role in the disorder. Scientists believe that many genes on different chromosomes may be a cause. A research team recently identified a small gene region on chromosome 5 that may be associated with 15 percent of ASD cases (10). Another study found that abnormalities in a small region of chromosome 16 were about 100 times more common in children with ASDs than in unaffected children (11). Certain infections that occur before birth (such as rubella and cytomegalovirus) and older maternal age also have been associated with ASDs (2, 12).

About 10 percent of children with ASDs have other genetic diseases, including (1, 2): 
  • Fragile X syndrome (intellectual disabilities and behavioral problems) 
  • Tuberous sclerosis (non-cancerous tumors that affect the brain and other organs) 
  • Down syndrome and other chromosomal birth defects 

Do childhood vaccines contribute to ASDs?

Childhood vaccines, including the measles/mumps/rubella (MMR) vaccine, do not cause ASDs. Many studies have shown no link between the MMR vaccine and ASDs. In fact, the controversial 1998 study that set off concerns about a possible link between the MMR vaccine and ASDs was recently retracted by the medical journal Lancet that originally published it (13).

Some parents of children with autism suspected that the MMR vaccine, given around 12 to 15 months of age, contributed to ASDs because their children began to display symptoms of ASDs around the time they were vaccinated. Most likely, this is the age when symptoms of the disorder commonly begin, even if a child is not vaccinated.

Another reason that childhood vaccines were suspected of playing a role in ASDs is that, until recently, they contained a small amount of a preservative called thimerosal. Thimerosal contains mercury. While higher doses of certain forms of mercury may affect brain development, studies suggest that thimerosal does not. Since 2002, most routine childhood vaccines have not contained thimerosal. Some flu shots contain thimerosal, but parents can request flu shots that are thimerosal-free.

In 2004, an Institute of Medicine panel concluded, after reviewing many studies, that neither the MMR vaccine nor vaccines that contain thimerosal are associated with autism (14). A 2008 study found that the rate of ASDs in California continued to increase after thimerosal was removed from childhood vaccines, also suggesting a lack of association between thimerosal and ASDs (15). 

How is autism treated?

Children often show great improvement with intensive behavioral treatment beginning during the preschool years. A recent study of children diagnosed with ASDs between the ages of 18 and 30 months found significant improvements in IQ (nearly 18 points), language skills and behavior after 2 years of participation in a behavioral intervention program designed for toddlers (16). The AAP recommends that infants and toddlers suspected of having an ASD be referred immediately to an early intervention program (2).

There is no cure for ASDs. However, some children benefit from medications that help improve their behavioral symptoms so that they are better able to learn. Some commonly used medications include: 
  • Anti-depressants and anti-anxiety drugs.
  • Anti-psychotics: A new anti-psychotic drug called risperidone (Risperdal) is the only drug that is approved by the Food and Drug Administration (FDA) specifically for autistic behaviors, such as aggression, self-injury and temper tantrums (5). 
  • Stimulants: One such medication is Ritalin, which is commonly prescribed for attention deficit hyperactivity disorder (ADHD). 

Some children with ASDs are treated with alternative therapies, such as a strict eating plan, vitamins and detoxification therapies (such as the drug treatment called chelation which reduces the amount of mercury and other metals in the body). To date, there is no evidence to show these treatments are helpful (17). Parents who are interested in alternative treatments should discuss the possible risks and benefits with their child’s health care provider. 

Does the March of Dimes support research on ASDs?

The March of Dimes supports a number of grantees who are studying the role of specific genes in brain development for insight into how abnormalities may cause ASDs. Study results could provide the basis for developing new treatments for ASDs. Another grantee is studying differences in how autistic children process information and pay attention, in order to develop improved educational interventions. 

Where can I find more information on autism spectrum disorders?

  • Autism Spectrum Disorders (U.S. Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities) 
  • Autism Fact Sheet (National Institute of Neurological Disorders and Stroke) 
  • Autism (American Academy of Pediatrics) 

  1. Centers for Disease Control and Prevention (CDC). (2009). Autism spectrum disorders. 
  2. Johnson, C.P., Myers, S.M. and the Council on Children with Disabilities. (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120 (5), 1183-1215.
  3. Centers for Disease Control and Prevention (CDC). (2009). Prevalence of autism spectrum disorders – autism and developmental disabilities monitoring network, United States, 2006. Morbidity and Mortality Weekly Report, 58 (SS-10). 
  4. Kogan, M.A., Blumberg, S.J., Schieve, L.A., Boyle, C.A., Perrin, J.M., et al. (2009). Prevalence of parent-reported diagnosis of autism spectrum disorder among children in the U.S., 2007. Pediatrics, 124 (5), 1395-1403. 
  5. National Institute of Child Health & Human Development (2005). Autism Research at the NICHD. 
  6. Limperopoulos, C., Bassan, H., Sullivan, N.R., Soul, J.S., Robertson, R.L., et al. (2008). Positive screening for autism in ex-preterm infants: prevalence and risk factors. Pediatrics, 121 (4), 758-765. 
  7. Johnson, S., Hollis, C., Kochhar, P., Hennessy, E., Wolke, D., & Marlow, N. (2010). Autism spectrum disorders in extremely premature children. Journal of Pediatrics online. 
  8. Kuban, K.C., O’Shea, T.M., Allred, E.N., Tager-Flusberg, H., Goldstein, D.J. & Leviton, A. (2009). Positive screening on the modified checklist for autism in toddlers (M-CHAT) in extremely low gestational age newborns. Journal of Pediatrics, 154 (4), 535-540. 
  9. Buchmayer, S., Johansson, S., Johansson, A., Hultman, C.M., Sparen, P. & Cnattinguis, S. (2009). Can association between preterm birth and autism be explained by maternal or neonatal morbidity? Pediatrics, 124 (5), e817-825. 
  10. Wang, K., Zhang, H., Ma, D., Bucan, M., Glessner, J.T., et al. (2009). Common genetic variants on 5p14.1 associate with autism spectrum disorders. Nature. 
  11. Weiss, L.A., Shen, Y., Korn, J.M., Arking, D.E., Miller, D.T., et al. (2008). Association between microdeletion and microduplication at 16p11.2 and autism. New England Journal of Medicine, 358 (7), 667-675. 
  12. Shelton, J.F., Tancredi, D.J. & Hertz-Picciotto. (2010). Independent and dependent contributions of advanced maternal and paternal ages to autism risk. Autism Research. 
  13. Editors of The Lancet. (2010). Retraction—Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children. The Lancet. 
  14. Institute of Medicine. (2004). Immunization safety review: vaccines and autism. New York: National Academies Press. 
  15. Schechter, R. & Grether, J. (2008). Continuing increases in autism reported to California’s developmental services system. Archives of General Psychiatry, 65 (1), 19-24. 
  16. Dawson, G., Rogers, S., Munson, J., Smith, M., Winter, J., et al. (2010). Randomized, controlled trial of an intervention for toddlers with autism: the Early Start Denver model. Pediatrics, 125 (1), e7-e23. 
  17. Myers, S.M., Johnson, C.P., and the Council on Children with Disabilities. (2007). Management of children with autism spectrum disorders. Pediatrics, 120 (5), 1162-1182. 
Last reviewed May 2012
©2013 March of Dimes Foundation. The March of Dimes is a non-profit organization recognized as tax-exempt under Internal Revenue Code sec

September 7, 2014

Genetics and autism

My daughter Marley with my nephew Shawn.

What are the realities of autism being genetic.  I am not an expert on genetics or anything like that, but I do know that autism has affected my family.  My 2nd cousin is 16 years old and diagnosed at a very early age with autism. Just recently, I discovered a few photos of my grandfather. In each photo he was not looking at the camera.  It wasn't a situation that he was looking away by accident, it was an intentional 'can't look in your eyes' type of situation.  When I asked my mother about him and his tendencies, she admitted that, now in hindsight, my grandfather had stimming tendencies. He would pace back and forth, just like Marley, and rub his fingertips insistently.  He would do this for a long while, and people around him would notice and comment. My uncles would occasionally tease him endearingly.  

I also know that my husbands aunt, although never diagnosed, had severe tendencies leaning towards autism.  She was more towards the mid to low functioning. She was never able to care for herself. She never lived alone, or got married.  After her caretaker, who was her sister, passed away she had to be put in a home for mentally disabled individuals.  Needless to say, she did not take this very well.  She passed away in her mid eighties at the home. 
Breaks my heart to think that if Marley was born just a few decades earlier, she would of been diagnosed with juvenile or infantile schizophrenia because of her self talk!!! 

Following this post is an article on genetics and autism.  I certainly do think it runs in families. It does in mine! During the week I'll be posting articles on this subject matter through twitter.  You can follow me at VanessaK245.  

There are several books on the subject of Autism.  Check out the side ad offering books that Amazon has.  If you are interested in reading more about this, click on the link and it will take you to a whole list of books to chose from.  Please know that this is an affiliate link, and it will help me keep this blog going.  I truly appreciate the support.  

Genetic means pertaining to the genes. Hereditary means inherited. A genetic disorder is usually, but not always inherited
Hereditary is when something is passed through your Genes. Genetic IS Hereditary. 
However, Congenital is is a genetic abnormality that occurred in the fetus, not in the actual passed down genes

Genetics play a bigger role than environmental causes for autism
Genetics plays more of a role in the development of autism than environmental causes, according to new research published Sunday in Nature Genetics.
The study found that 52% of autism risk comes from common genes, while only 2.6% are attributed to spontaneous mutations caused by, among other things, environmental factors.
“These genetic variations are common enough that most people are likely to have some,” said Joseph Buxbaum, a researcher at the Mount Sinai School of Medicine and one of the lead authors on the study. “Each one has a tiny effect on autism risk, and many hundreds or thousands together make a significant risk.”
Using Sweden’s health registry, the researchers compared 3,000 people with autism to 3,000 people without autism to determine the degrees that common and rare genes, as well as spontaneous mutations, contribute to autism risk. The study authors also compared the study’s results with a parallel study of 1.6 million Swedish families that identified specific genetic risk factors.
Buxbaum says the presence of these common genes can only determine the risk of autism, not whether or not the condition will develop. And even though spontaneous mutations only account for a small percentage of autism risk, their effect is significant.
“[Individuals] might have all the common variants there as part of their background risk, but it took this initial hit to push them over the edge,” Buxbaum said.
Chris Gunter, an autism researcher at the Marcus Autism Center and professor at the Emory University School of Medicine, says the findings of this study are similar to those reported in other studies.
“There is no one gene for autism,” Gunter said. “Instead there are many different genetic variations which each contribute a little bit to the risk of developing the group of symptoms we diagnose as autism.”
She added that we still don’t know exactly how much these different factors contribute to the development of autism.
Once scientists accumulate more data on the autism population, Buxbaum says this new research could help develop a “risk score” - such as the one that exists for heart attacks - that would help patients determine the likelihood of family members developing autism.
“The autism field has changed dramatically,” Buxbaum said. “We now have immense power to find both common and rare and spontaneous mutations in autism. That’s really the exciting part.”
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Filed under: Autism • Living Well

August 16, 2014

Autism and SPD (Sensory Processing DIsorder)

First let me start by saying that not all kids that have SPD are autistic but most autistic kids have SPD. I want to make that clear because one of the ways parents sometimes determine whether something is not right is because their kids are hyper sensitive to sound, light or clothing. In some cases even hypo sensitive to pain. 
Marley can cut her finger and it seems like it doesn't even phase her. But if you sing 'Happy Birthday' too loudly, she'll cover her ears and scream 'too loud'. 

This is Marley being 'over-processed' by the bright sunlight.
She tried to tolerate it because she wanted to go on her swing.
Swinging is another form of stimming for her.

As in my personal case, I am not Autistic. I was diagnosed with ADHD at 6 years old. At that time it wasn't even called ADHD (I am now 42 years old). It was called short attention span with mild hyperactivity and mild depression. I was reevaluated when I was in my twenties and while the diagnosis stayed the same, the words changed. It was now called ADHD, attention deficit hyperactivity disorder. I have always had the sensory issues, mostly with sounds. If my mom ever dropped something on the floor when I was an infant, lets say a pot, I would be set off like a siren. She said the screams were unbearable and it took a few minutes to calm me down. I also have some issues with bright lights. I've been wearing sunglasses ever since I could remember. People would tease me saying I wanted to look cool......but it was because the sunlight was giving me piercing headaches!!!

Here is an article written by Laura Geggel that gets straight to the point about kids with Autism and sensory issues.  

When Marley started walking at 22 months I put her in daycare part time. I felt she needed to be with other children since she never showed any interest in playing with others. I figured if she was exposed to other kids she would then want to be with them. Three months into her being in school the teachers would comment on how she was always covering her ears whenever the kids would get loud. Or she wouldn't want to go outside with the other kids. She would only sit around the 'quieter' kids.  

I figured since I was sensitive to sound and light, then she must take after her mother. Marley started saying words at a young age but that doesn't mean she knew how to communicate. I would try and ask my 2 year old what was bothering her, but to no avail.

As she got older the noise was even more overwhelming for her and she would avoid any situation that she felt would be noisy. We have had to leave many birthday parties because of it. Some parties we didn't even get through the door and we had to drop off the gift and leave.  Thats when I knew something wasn't right. While I had my issues with sound and light, it never affected me to the point of taking over my whole life.  Especially at such a young age.  If it was too noisy for me, I would go to the bathroom for a few minutes, regroup, take a few breaths and I would be good to go. But my poor daughter wasn't able to regroup herself.  She would go into full blown meltdown mode.  

As you can see the look on her face, she was overwhelmed here.
We were on the safari ride in Six Flags Great Adventure.
Here is my husband, daughter and nephew.
It may look like she just trying to chase him, but she is actually seeking stimulation from him.
He is spinning them both at the same time. My husband is 6'6" and could handle them both... lol 

Since hubby and I learned what her 'triggers' are, she's been much better.  I now see her using the coping skills she learned at school and through our private therapist that specializes in children and adolescents with Autism.  Intervention at an early age is so important.  I feel it made all the difference in the world for our family.

I also post articles I find interesting and educational about Autism. 
You can follow me on Twitter @VanessaK245. 

August 2, 2014

The importance of play with your ASD child.

Like most parents, I like to observe my child at play. I like to watch her with her imagination going and how she behaves with her dolls and toys. Sometimes my child seems to not play with toys appropriately. There is a difference between using imagination and not using a toy appropriately.  One thing is to use a toy race car as a moon buggy, another thing is to use it as a roller skate. She also loves to hide everything in drawers and cabinets. It drove my mother, her Abuela, crazy !!! She would find her salt shaker in her vitamin!!!

Marley likes to take her plush toys, she has a Bowser and Enderman specifically, and wrap them with tape. She covers them in rolls of regular tape, the kind you would use when wrapping a gift. I'm still trying to figure out where she came up with this idea. It would take me about 10 – 15 minutes a to try and unwrap all of her plush toys. I would explain to her that doing this will ‘break’ her plush toys and they will become sticky and dirty. 
So what does my child do? Starts taping up her dolls instead !!! Poor Barbie still has tape in her that I do not have the patience to take out.  

I still don’t understand what drives kids with ASD to play in that manner, but I do understand that I can redirect her behavior to be more appropriate. Let her understand that taping her toys is not beneficial, or fun, to do with her toys.

That’s where the importance of playing with your ASD child comes in.

I would have never thought that I would have to learn how to play! I needed to learn that my response, as well as my own body language and position, was important in initiating an appropriate response from her. Yelling at her not to waste tape is not exactly what she needs in order to learn that using tape is inappropriate. Explaining that using the tape will stick to the plush and when I remove the tape some of the 'softness' of the toy will be pulled off will be more logical to her and she will then understand why its not appropriate to tape up her plush dolls. Phew, that was a mouthful !!! By playing with her I am able to engage in the activity with her and help her realize what appropriate behavior is with using toys.  

There is an art form in playing appropriately and with meaning.  I’ve heard of some books that help with this subject and even specific therapies (PICT, parent child interaction therapy).  It takes skill to learn what motivates a child in the moment and turning it into social engagement, and quite frankly….it's exhausting.

Here is a six and a half minute video about play therapy 

It's also just as important to have friends to play with. Its been just recently that Marley has had the desire to initiate any type of play with others. Her friend from horseback riding was the first friend that SHE made. This wasn't initiated by us or by any teachers or therapists. Her name is Branna and she is 8 years old. It was an instant connection !!! Luckily, hubby and I got along really well with her parents, Laura and Chris.  

Our first play date EVER with a friend that SHE MADE!!! It wasn't with our friends' kids and it wasn't from kids she knew from school. It was on Memorial Day weekend A.K.A. my birthday weekend. Branna, her brothers and her parents came over. It was very exciting for everyone!!! I was emotional because I thought this day would never come. 

My daughter is hosting a playdate!!! A good time was had by ALL !!! 

The water was freezing !!! But the kids didn't care !!!

The kids were so receptive to her.  They accepted everything about her, didn't even notice any of her stimming or quirkiness.
I also realized that it is just as important for us parents to have friends that understand what you are going through.  But thats the next blog post ... 

Our teeth were chattering just watching them swim in this cold water !

Our second playdate was with kids from her class.  What a blast !!!

These kids are together all day in a self contained class.  Which means there are 6 kids in one classroom with the same classification and/or diagnosis, and very similar level of academics. They spend about 5 hours, of the 6 hour school day, together dealing with social situations.  

This kids have a bond that I don't think anyone else will ever understand. They have their own language and understand each other perfectly.  They feed off of each other and know how to push each others buttons as well as comfort each other.  They get it !!!

They love the swing set.  Lots of sensory input here !
This is from the next playdate !!!
Look at that terrified face lolol!!!

Some pics from a "dance party" Marley had.

All these recent playdates made me realize that we all need a connection with others.  A support system is very important and very much needed.  We may not all understand each others every need or have the same exact situation, but we can support each other because we have 'been there'. Even if it's just to vent!  Who else will know what an IEP is or what ABA therapy is !!!!  It's a whole different life having a child with special needs and we all need someone that can understand that lifestyle.