Hypotonia and Autism

I am writing about Hypotonia today because I am so happy that it is finally being recognized more in the Autism world as well as being associated with other disabilities as well such as;

Down syndrome

Myasthenia gravis

Kernicterus

Cerebellar ataxia

Familial dysautonomia

Muscular dystrophy the list goes on and on.

What is Hypotonia?

Hypotonia aka Low Muscle Tone is a medical term used to describe decreased muscle tone.  Normally, even when relaxed, muscles have a very small amount of contraction that gives them a springy feel and provides some resistance to passive movement.  It is not the same as muscle weakness, although the two conditions can co-exist.  Muscle tone is regulated by signals that travel from the brain to the nerves and tell the muscles to contract.  Hypotonia can happen from damage to the brain, spinal cord, nerves, or muscles.  The damage can be the result of trauma, environmental factors, or genetic, muscle, or central nervous system disorders.  For example, it can be seen in Down syndrome, muscular dystrophy, cerebral palsy, Prader-Willi syndrome, myotonic dystrophy, and Tay-Sachs disease.  Sometimes it may not be possible to find what causes the hypotonia.  Infants with hypotonia have a floppy quality or “rag doll” appearance because their arms and legs hang by their sides and they have little or no head control.  Other symptoms of hypotonia include problems with mobility and posture, breathing and speech difficulties, ligament and joint laxity, and poor reflexes.  Hypotonia does not affect intellect.  The opposite of hypotonia is hypertonia.Low Muscle Tone 2Low Muscle Tone 1

Sarah was diagnosed with Hypotonia the same time she was diagnosed with Autism. Back in the 1990’s Hypotonia was not even considered as being one of the complications that could be associated with Autism.

30% of children diagnosed with Autism also have Hypotonia.2014-02-04 21.33.49

Sarah had some physical therapy to help her muscles become stronger. The problem was that the insurance did not seem to think it would be a long term health issue with Sarah, so they refused to pay for anymore treatments.

As a result we as a family had to try and pick up where the therapists left off. We did our best but most of the time Sarah (do to her sensory issues) did not want to be touched and there fore would not comply.

As a result of having Low Muscle Tone and not being properly treated Sarah still struggles with it. She really needs to exercise more so she can keep the muscles that she has good and strong.2005-09-06 20.04.53

Hypotonia can cause complications such as frequent joint dislocations. Sarah has joint dislocations especially in her knees. She fell back on her leg one time and totally dislocated her knee, which in turn she now has arthritis in that knee. She has a really hard time walking a lot of times and requires help to do so because of her knee.

If your child has been diagnosed with Hypotonia (a.k.a Low Muscle Tone) find out what caused it and get the best help you can. Here are a few good resources to help you out.

 

Hypotonic children are often treated by one or more of the following specialists:

  • Developmental pediatrician: a pediatrician with specialized training in children’s social, emotional, and intellectual development as well as health and physical growth. He or she may conduct a developmental assessment which will determine any delays the child has and to what extent the delay is present.
  • Neurologist: a physician who has trained in the diagnosis and treatment of nervous system disorders, including diseases of the brain, spinal cord, nerves, and muscles. Neurologists perform neurological examinations of the nerves of the head and neck; muscle strength and movement; balance, ambulation, and reflexes; and sensation, memory, speech, language, and other cognitive abilities.
  • Geneticist: a specialist in genetic disorders. He or she starts with the detailed history of the family’s background, looks at the child’s features and orders blood tests to look at the 46 chromosomes and possibly at specific genes on those chromosomes.
  • Occupational therapist (OT): a professional who has specialized training in helping to develop mental or physical skills that help accomplish daily living activities, with careful attention to enhancing fine motor skills. In a developmental assessment, the occupational therapist assesses the child’s fine motor skills, coordination, and age-appropriate self-help skills (eating with utensils, dressing, etc.).
  • Physical therapist (PT): a professional trained in assessing and providing therapy to treat developmental delays using methods such as exercise , heat, light, and massage. In a developmental assessment, the physical therapist assesses the ability and quality of the child’s use of legs, arms, and complete body by observing the display of specific gross motor skills as well as observing the child in play.
  • Speech/language pathologist (SLP): a professional who is trained in assessing and treating problems in communication. Some SLPs are also trained to work with oral/motor problems, such as swallowing, and other feeding difficulties resulting from hypotonia.

Read more: http://www.healthofchildren.com/G-H/Hypotonia.html#ixzz3V3jxLBeT

 

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Labeled Disabled Does Not Mean You Cannot Learn

My title is right. Just because a person is labeled disabled does not mean that they cannot learn. I cannot believe that there are still some people out there that are in stone age thinking.

Let me enlighten a few people out there with my rant. As you all no, my Sarah has been diagnosed with Autism and other disabled labels. Was it hard for her to learn? YES! Do you know why? Let me tell you, because some of her teachers did not teach her in the way that she could learn. They were to much by the book. It was not their fault, that is just how it was back in the 1990’s.2014-02-04 21.44.28

Did Sarah’s teachers inability to effectively teach her stop Sarah from learning? NO!!! Tell me how many people (that are labeled disabled) out there have 3 jobs to help support themselves to be as independent as possible and went to the State Capitol to fight to keep the right to have her jobs. My Sarah did!2015-02-24 13.29.00-22015-02-24 13.26.58-3

Sarah took the IQ test and it said hers was 61. She is verbal and very smart. The dr’s told us she not talk or probably not walk, she does both. She may not be a scholar in the traditional sense, but she can take a vacuum apart and put it back together again, without reading instructions and have it working better than it was before.

Sarah has learned to advocate as much as possible for herself and we do the rest for her.

I am writing this to encourage anyone out there that no matter what an IQ test says or anyone else for that matter, you are a blessing and you can learn. Don’t let your label in life define you or limit you.

 

Autism, Hypothyroidism and Adrenal Disease

It seems that there is a link between Autism and Hypothyroidism. If you are Autistic or not if you have any of the below symptoms of Hypothyroidism and/or Adrenal issues please get checked by your doctor.

Mine and Sarah’s experiences with Hypothyroidism are a lot the same. The only differences would be that her symptoms are much more heightened than mine.

2015-02-24 13.28.48

Do you have these symptoms?

  • Fatigue
  • Increased sensitivity to cold
  • Constipation
  • Dry skin
  • Unexplained weight gain
  • Puffy face
  • Hoarseness
  • Muscle weakness
  • Elevated blood cholesterol level
  • Muscle aches, tenderness and stiffness
  • Pain, stiffness or swelling in your joints
  • Heavier than normal or irregular menstrual periods
  • Thinning hair
  • Slowed heart rate
  • Depression
  • Impaired memory

If you do please go to your doctor and get checked for Hypothyroidism. While you are getting checked for Hypothyroidism have your doctor check your adrenal function.

I was diagnosed with Hypothyroidism when I was 17. When I was 45 my doctor checked my adrenal function to find out that I have a rare form of adrenal disease, which caused the Hypothyroidism.

Now if you are thinking that you may have adrenal fatigue (which is also linked to Hypothyroidism) please take a look at these symptoms.

2015-02-24 13.26.36-1

 

Do you have chronic fatigue?

Does your energy plummet half way through the day?

Do you struggle with insomnia?

Do bright lights bother you more than they should?

Do you startle easily due to noise?

When standing up from sitting or lying down, do you feel lightheaded or dizzy?

Do you struggle with chronic pain or fibromyalgia?

Do you have chronic headaches or migraines?

Do you have depression, anxiety, or mood swings?

Do you struggle with weight gain?

Do you have low sex drive?

Do you feel wired and tired?

If you answer yes to many of these, speak to your doctor about an adrenal function saliva test.

Please read this article from hypothyroidmom.com – http://hypothyroidmom.com/10-ways-to-overcome-fatigue-with-a-low-thyroid/

Hypothyroidism can have a profoundly deleterious effect on the developing brain, thus significantly contributing to the web of causes of autism.

This article from http://raphaelkellmanmd.com/specialties/the-thyroid-autism-connection/  talks about the connection of Autism and Hypothyroidism. Please read it.

We all no that Autism is very stressful on the body. We caregivers have our own stresses in trying to help our children with Autism which in turn effects our bodies. Just think of what a person with Autism body is going through with their stresses. I believe these stresses that are consistent have a direct effect on the Adrenal Glands.

Do your own research. I sure plan to.

 

 

 

 

Faith – Autism and Family Relationships

Family Picture

Family Picture

When you hear the diagnosis of Autism applied to your child, your whole world changes. At first you think that only your life has changed but that is not true. Your whole family dynamic changes and that includes the grandparents as well.

“It’s not what you thought your life would be like,” says Kathleen Patrick. Patrick is vice president of services for Easter Seals New Jersey. Her son, Adam Martin, 11, has an autism spectrum disorder known as pervasive developmental disorder — not otherwise specified (PDD-NOS). Her other son, Mark Martin, 9, is developing typically.

It’s not horrible, just different, Kingsley writes. She suggests that if you spend your life mourning the lost trip to Italy you will never enjoy the special qualities of Holland. After you’re there a bit, she says, you notice the charm –tulips, windmills, Rembrandts.

Whether the child with autism is the first-born, in the middle, or the baby, parents often worry about the effect that dealing with the autism — and the time commitment it involves — will have on the other children. “I think most parents bend over backward so it doesn’t affect the other children,” says McCarton.

In a recent study published in the Journal of Autism and Developmental Disorders,researchers compared siblings of autistic children with siblings of non-disabled children and found those with the autistic sibling were actually better adjusted psychosocially and emotionally. They did find, however, that it’s more difficult for the non-disabled child to cope with the autistic sibling if multiple risk factors such as low income are present.

Sarah's Sisters - Marci and Anna

Sarah’s Sisters – Marci and Anna

Exactly why the siblings of autistic children scored better isn’t known. Wright says they may have a higher level of maturity from observing and being involved in the care of a child with autism. “The message is,” Wright tells WebMD, “lots of siblings are doing OK.”

Marci visiting from out of state on Sarah's birthday.

Marci visiting from out of state on Sarah’s birthday.

Dealing with a diagnosis of autism puts a strain on any marriage. Men and women tend to react to the news differently, according to McCarton, and that can add to the stress.

“Women are profoundly sad. But they hit the ground running,” McCarton says, referring to the typical reaction women have on hearing the diagnosis. “They mobilize. Men often retreat into work.” Also, men often question the diagnosis or deny it.

This is what happened in our family. We had a lot to overcome.

The solution is to make time for each other, which is more easily said than done. Families are already time-strapped dealing with behavioral therapists, many doctor appointments, and above-average financial stress. Even so, experts say, couples have to feed the relationship — even if it’s watching a video together or talking after the kids are asleep.

It is kinda hard to find any time for each other but you must. Our Sarah only required 3 hours of sleep a night, so sleep for me was almost nonexistent. The only time Robert and I had anytime together in the early years was when respite or my mom would babysit. Most of the time it would be my mom, because the people at respite that would babysit would only do it once LOL.

It’s also crucial to steal solo time just for yourself, McCarton tells parents. She asks them: “What were the things you loved before?” When parents protest they have no time or money to indulge themselves, she says: “It doesn’t have to be expensive or take up hours of the day. It can be going to Starbucks and having a cup of coffee by yourself for half an hour. It can be taking a shower for 15 minutes.”

In our family the only alone time I had was when I was in the bathroom. I loved my showers and baths. They did not last long, but they were very much appreciated.

Many people deal with those challenges by opting out, according McCarton, which, she says, is a mistake. She says it’s important to think through what can be done to make the child with autism — who can become extremely upset by changes in routine that come with vacations — more comfortable on a trip.

We traveled a lot, always looking for a better place to live where all of our kids would get the best education and living atmosphere we could find. We were the family that seem to think the grass is always better on the other side. Sarah actually come to like the traveling and she learned to accept different types of people with know judgement. In other words she became a little more flexible.

With more awareness about autism and what it is, parents may expect friends and acquaintances to be accommodating to their autistic child’s needs. Maybe not, says Wright. “People are more aware, but I am not sure they know what to do or how to support” families dealing with it, she says.

Even with the awareness, people can stare when a child with autism displays what they consider odd behavior. “You get to the point where you get a thick skin,” Senator says. “You don’t care if people are staring at your kid.”

I personally never got to the point of having thick skin. I have however had a few confrontations and lost a few friends. My attitude was that if you didn’t accept my child you did not accept me. Maybe I did get a little thicker skin, but not much.

You learn, she says, to take control — even if you don’t feel so in control.

Letting go of that image of what the “ideal” family is can help

“Let yourself go with that and not worry about being a Hallmark card. Nat has taught me to be less uptight about those kinds of things. You can find enjoyment in odd places with these kids.”

Grandma (my Mom) and Sarah.

Grandma (my Mom) and Sarah.

Above all else always remember there is the God factor!

Spiritual life can be an important aspect of overall quality of life – for individuals with autism and the families who support them. Dealing with a disability does not reduce the need for a spiritual life. For some, in fact, the role of faith increases significantly when overwhelmed by the challenges a disability can bring to one’s life or family. A faith community is a cornerstone for spiritual support, and more critical support at a time of crisis. But these communities offer so much more than just support, as they are also a social network hosting activities and events for education, entertainment and relaxation. Additionally, a variety of ministries and volunteer options typically invite members to contribute their time and talents to give back to the community in a meaningful way. Families dealing with autism and developmental disabilities may struggle to feel welcome in these communities, accentuating the already existing feeling of isolation from the community at large. http://www.autism-society.org/living-with-autism/family-issues/autism-and-faith.html