Category Archives: Caring for children with autism

Special Education Advocates

Every child deserves a rich and meaningful educational experience. When a child has special needs, however, the experience may be very different from his/her peers. How can parents find out their rights and their child’s rights when it comes to special education, IEPs, 504 Plans and modifications in and out of the classroom? Special Education Advocates are a great tool that can help parents navigate the sometimes overwhelming world of special education.

While advocating for your child requires some level of self-education and research about your child’s needs and disability, it may also require the help of a professional advocate. An advocate is someone who helps a parent or family to understand the special education process. Advocates can provide information about special education options and requirements, and can help parents seek a specific service or program for your child. Advocates usually have a broad range of professional and or personal experience within the special education system – as teachers, lawyer advocates or parents of a special needs child. They have the insider knowledge of how to navigate the special education process so that your child will get the services he/she deserves. 

Advocates are intended to help empower you as parents with information and provide concrete steps that will help you get your child the services needed. Many advocate groups provide workshops and mediation services as well. Here are a few resources to check out while researching advocacy and how it works.

Special Education Advocacy 

Advocate Support for Parents 

 

Connecting through Blogging

Being a parent of a child with special needs can be stressful, overwhelming and down-right hard at times. It can extremely painful to watch as neurotypically developing peers advance and evolve through milestone after milestone while your child struggles along at home and at school. It can be sad to see the hurt in your child’s eyes as they try to do what others around them do. It can be exhausting to deal with meltdowns, communication issues and social interaction triggers. For social media savvy parents, there seems to be some relief in a new method of connecting with parents in the same situation – blogging.

Blogging is not something that is new, but is new to many parents who are using it as a release from the daily grind. The wide range of types of blogs coming from parents who have a child on the spectrum are amazing. From moms of the newly diagnosed kids to moms of adults on the spectrum, there are blogs that can help you connect and deal with whatever issue you are currently facing. There are even blogs written by children and adults with Aspergers or autism spectrum disorders. For siblings who are looking for answers and someone to listen, there are blogs of that nature as well. 

No matter what stage or life event you are dealing with, blogs from parents, siblings or those affected first hand by ASD can create a sense of community and a feeling that you are not alone out there navigating this by yourself.

Find a blog that you can connect with through these resources or better yet start your own blogs.

Autism Speaks Blogs 

Top 10 Blogs by People with ASD 

Autism Blogs Directory 

What to Expect During the IEP Evaluation process

If you suspect that your child has a special need when it comes to his/her schooling, getting special education placement is the best course of action. In order to gain special education services for the first time, he/she will need to undergo a comprehensive evaluation. This process is guided by legal rules in the Individuals with Disabilities Education Act (IDEA).

Starting the process of evaluation is fairly easy in that asking for it in writing from the school system within your community is the first step. A letter to the child’s teacher, principal and special education director should state your concerns and formally request evaluation by the school district. The school district then has a certain number of days to respond, gain permission and conduct the testing.

Once an evaluation date has been agreed upon the child will undergo the testing. These tests may include:

  • A psychological evaluation. This gathers information about how your child learns best. It may also look at social skills and emotional health.
  • Interviews. The evaluator will speak with you and your child’s teacher about your child’s social and academic history. You may also be asked to fill out questionnaires. Teachers who currently have your child in class as well as past teachers may be asked to fill out a questionnaire so the evaluator knows what the issues are.
  • Physical exam. If needed, tests are done to measure vision, hearing and general health. Usually this is done to rule out a medical issue and can be done at your child’s pediatrician’s office or done during a routine yearly exam.
  • Observations. Your child will be observed in the classroom. Special education teacher will watch your child interacting with others, reading, writing, and behaving in the classroom setting.
  • Educational testing. This may include new tests to measure your child’s skills and needs. It may also include information collected from schoolwide testing. Each school system has certain tests that they will administer. Do your homework and ask what tests and why.
  • Functional behavioral assessment. This information, gathered from teachers and others, aims to get a better understanding of how your child behaves in a variety of settings and situations. A functional assessment includes rating scales, checklists, questionnaires and observations.

From here the team of teachers and special educator will meet with parents and make their assessments known. Check back with us next month when we discuss the initial IEP meeting.

 

Deciphering your IEP

Individualized Education Plans are meant to bring teachers, specialists, therapists, and parents together to develop an educational program for the student. This plan – IEP –  will support progress in the general curriculum and meet other educational and functional needs resulting from the disability. In general IEPs are meant to help the student, parents and school personnel all get on the proverbial “same page” when it comes to the needs of the student. Unfortunately, some educational terms and acronyms are confusing and get lost in the wording of the plan. Here is a quick cheat sheet to help you decipher an IEP.

 

  • IEP – Individualized Education Plan
  • Accommodations – Resources given to the child.  For example, taking a test in a small group, having a longer time to take the test, taking the test in a different environment. While the test had not changed the needs of the student have been taken into account.
  • Early Intervention – These are services provided to children 0-36 months who are at risk of having a disability or have been diagnosed with a disability. Early intervention has been shown to help children progress.
  • Inclusion – This is a term used to describe services given to a special education student in the general education classroom with appropriate supports and modifications.
  • Free Appropriate Public Education (FAPE) – Special Education and related services are provided at the public’s expense, without charge to the parents.
  • Individuals with Disabilities Education Act (IDEA 2004) –  In 1975, legislation was written guaranteeing students with disabilities a free and appropriate public education and the right to be educated with their non-disabled peers.  IDEA was revised in 2004.
  • Least Restrictive Environment (LRE) The placement of a child with special needs in the general school population in a manner that promotes the maximum possible interaction with general education students.
  • OT – Occupational Therapy/Therapist An Occupational Therapist supports school staff in the areas of fine motor and sensory integration.  Fine motor being skills such as writing, picking up objects, and pointing.
  • PT – Physical Therapy/TherapistA Physical Therapist supports school staff in the area of gross motor.  Gross motor focuses on larger muscle sets and include walking, throwing, climbing.

Stress Reducers for Special Needs Parents

Seems like everyone is stressed out lately. Whether it is work, home, kids, traffic, politics or the constantly growing piles of bills. There seems like there is always something triggering our stress on a day-to-day basis. For parents who have children with special needs, the never-ending balancing act of work and caregiving can be overwhelming. In addition, finding ways to reduce stress can be elusive and time consuming. Here is a quick list of ways that you can reduce stress in your life even if it is just for a few minutes a day.

 

  1. Try progressive relaxation. To to get those muscles to relax all the way from your fingers to toes. First tense each set of muscles then relax them.
  2. Practice deep breathing exercises. This has been shown to lower cortisol levels, which can help reduce stress and anxiety. Studies suggest deep breathing can also cause a temporary drop in blood pressure.
  3. Practice doing daily exercise even if it is only a quick walk around the block or yoga stretches in your bedroom.
  4. Cut down on caffeine and alcohol. These may make you depressed or on edge.
  5. Pet your dog or cat. Dog owners have been shown to be less stressed out—most likely thanks to having a buddy to cuddle.
  6. Take a power nap. Even ten or fifteen minutes can help reduce your cortisol level and help you focus. Sleep deprivation can only heighten your stress.
  7. Do something you love whether it is gardening, art, writing, drawing or shopping. Treat yourself to something that brings you joy. Can’t find the time? Try visualizing it until you can do it.
  8. Laugh often. Parents who are stressed often find stress reduction in talking and laughing with other parents who are in the same boat.
  9. Physical touch can help. Stress can be reduced when you hug, hold hands, snuggle or kiss.
  10. Listen to music. While it doesn’t need to be classical it should be music that is calming and allows you to get your mind off the stressor for a moment.

 

If you are having difficulty reducing the stress in your life – talk to your friends, relatives or even a therapist to find ways to cut back on stress and anxiety in your life.

 

Gastrointestinal Issues and Autism

If someone asked a layperson,” what are the common issues that face a child with autism?”, many would answer issues with communication, socialization or several other matters related to the disorder. While these issues are common, gastrointestinal problems are among the most common of issues, unfortunately. These issues range from chronic constipation or diarrhea to irritable and inflammatory bowel conditions.

According to Autism Research Institute, a recent study has shown just how prevalent GI issues really are within the autism population. The study showed that 70% of the children with ASD had GI Issues compared to 42% of the children with developmental disorder other than ASD. Just like everyone else, people with autism may suffer:  Gastritis, GERD, Colitis, Irritable Bowel Syndrome, constipation, Motility-based disorders or food allergies and sensitivities. Two of the more common issues involve chronic constipation and chronic diarrhea.

  • Chronic Constipation – Although occasional constipation happens to all of us at some time in our lives, chronic constipation can be a serious condition. Because constipation is particularly common among children with autism special dietary restrictions or medication are regularly adhered to.  Medication may be needed to keep children and teens regular.
  • Chronic Diarrhea – Again, we can all relate to a bout or two of diarrhea in our lifetimes, but chronic diarrhea can be painful and difficult to deal with. Chronic diarrhea may have a number of causes including intestinal infection, immune dysfunction, inflammatory bowel diseases (Crohn’s or ulcerative colitis), irritable bowel syndrome, celiac disease (gluten intolerance), food allergies, lactose intolerance, or excessive consumption of certain foods such as apple juice. Treatment for this GI problem is usually dependent upon what is causing the issue, whether it is a dietary change, infection or other cause.

Family Stress and Autism

Raising children can be stressful.  Raising children on the spectrum tends to be even more stress inducing when you factor in therapy appointments, schooling issues, nutritional issues, medical factors, and the list goes on and on. According to Raising Children with Autism online resource, families of children with autism spectrum disorder (ASD) often report high levels of stress. In fact, many see it as a normal part of a family’s journey with ASD.

Gender and Stress

In many families, unfortunately, mothers tend to take the brunt of the stress on themselves. Mothers often report feeling stressed more than fathers – possibly because mothers tend to be the primary caregivers in the majority of families. Particular sources of stress for mothers include their children’s unpredictable sleeping patterns, limited ability to express emotion, and fussy eating.  Furthermore, research at the Autism Network has shown that women in families with a child on the spectrum tend to bear the brunt of day-to-day burdens and domestic labor, end up responsible for managing the higher levels of conflict in these families (between autistic and non-autistic siblings, for example), and receive more blame from outsiders and their spouse for their child’s behavior. For fathers, children’s difficult behavior is often reported as a cause of stress. Each family member has their own thing that brings on the stress or pushes buttons to make activities or regular day events stressful. 

Reducing Stress

Researchers at Vanderbilt University – a part of the Autism Speaks Autism Treatment Network  – report that mothers of children with autism benefit significantly from weekly stress-reduction classes led by other mothers. The classes reduced previously high levels of personal stress, anxiety and depression, and improved the moms’ interactions with their children. The greatest benefits came with a simple “mindfulness” program involving self-relaxation techniques.  For more information about family stress and seeking help, read more at Autism Speaks or at Raising Children with Autism

Rett Syndrome

According to the Mayo Clinic, Rett syndrome is a rare genetic neurological and developmental disorder that affects the way the brain develops, causing a progressive inability to use muscles for eye and body movements and speech. It occurs almost exclusively in girls.  Only in rare cases are males affected.

Symptoms –

Symptoms of Rett Syndrome closely mimic the characteristics of Autism. Now, however, individuals can still be diagnosed with Rett Syndrome medically, and may also have a diagnosis of Autism Spectrum Disorder if they meet that criteria. Rett syndrome signs and symptoms include:

  • Slowed Growth – Brain growth slows after birth. Smaller than normal head size (microcephaly) is usually the first sign that a child has Rett syndrome.

  • Loss of Normal Movement and Coordination –  The first signs often include reduced hand control and a decreasing ability to crawl or walk normally.

  • Loss of Communication Abilities –  Children with Rett syndrome typically begin to lose the ability to speak, to make eye contact and to communicate in other ways. this is also a common attribute of autism so you can see the close similarities. 

  • Abnormal Hand Movements-  Children with Rett syndrome typically develop repetitive, purposeless hand movements that may differ for each person. Many children with autism have self stimulating behaviors that are similar to this behavior. 

  • Unusual Eye Movements – Children with Rett syndrome tend to have unusual eye movements, such as intense staring, blinking, crossed eyes or closing one eye at a time.

  • Mood Disorders – Children suffering from this medical condition tend to become irritated and agitated easily.
  • Physical Issues – Rett syndrome can be accompanied by breathing issues, abnormal curvature of the spine, an irregular heartbeat, and/or seizures.

Rett syndrome progresses through stages and gets worse as it moves through each. the Mayo Clinic and other clinics around the United States have recently been studying this disorder. Follow the links to find out more information about Rett syndrome.

Mayo Clinic Rett Syndrome

The National Organization for Rare Diseases – Rett Syndrome 

Life Skills for Transitioning Autistic Children

In our last few blogs we have been discussing transitioning from the tween and teen years into adulthood. Whether a child (or soon-to-be-adult) has the skills to enter college, live independently, maintain a job or do typical self care routines is really dependent on the life skills they have practiced and learned over the years, whether in school, at home or through therapies. Most schools and therapists believe in using the skills in every area and having parents reinforce these skills in the same manner at home. Here is a quick check list of transitioning life skills to practice with your teen who is transitioning.

Life skills are not just checked off on a master list but rather repeated over and over again until it becomes an integral part of the child’s life. Some of the most important life skill include: self care, safety, self-esteem, self-advocacy, self regulation and independent living skills. Each task should be broken down into smaller tasks and repeated, repeated and repeated.

Here, at Advancing Milestones, we have our own series of checklists for transitioning teens.  Find ours on our website, here. Our life skills are broken down into the following categories:

  • Academic
  • Social
  • Executive Functioning
  • Technology and Consumerism
  • Home, Food, Hygiene Related, Transportation and Leisure
  • Self-Advocacy, Disability Related
  • Medical Health, Mental Health and Sexuality
  • Jobs and College

In addition to our lists, here are a few other resources that may be helpful.

Here is a detailed list from the Children’s Administration Division of Children and Family Services – Life Skills Inventory and Independent Living Skills Assessment Tool. 

Here is an article with information on College programs and skills needed for Autistic children from the Interactive Autism Network.

The Autism Helper uses visual clues and step-by-step guides to help children learn skills.  Read more.

 

Coming of Age – Transition Planning with Autism

Coming of age can be a bittersweet and anxiety-ridden time for both parents and children. Graduating from high school, finding a job, going to college, paying bills,  and living independently are just a few of the major milestones. The list could go on and on. The road to adulthood is probably something parents of children on the spectrum have fretted over since the toddler years, and something children have anticipated for years. Careful planning for this transition should be an important part of the high school years. Let’s take a closer look at transition planning and some resources that will help you.

According the Interactive Autism Network, an unprecedented number of students with autism spectrum disorder (ASD) will leave high school and flood the U.S. adult disability system in the next couple of years. An estimated 50,000 Americans with ASD will turn 18 each year, as a part of “a surge of children” diagnosed in the 1990s. Planning ahead can mean the difference between gaining the right assistance for your adult-child and having to fight to gain access being offered to a growing number of people. Need help with transition planning? There are many resources and toolkits to help you navigate the legal and, sometimes, bureaucratic transition years. 

  • Talk to your child’s team. Include behaviorists, occupational and physical therapists as well as classroom teachers. This group can help you and your child begin the transitioning process very early in the high school years regardless of whether your child is at a specialty school like Milestones or at a public school.
  • Plan for the years after your child turns 21. Students with a disability of any kind are protected by the disabilities act until they turn 21. From there, things get a bit tricky. While your adult-child may be eligible for adult services such as housing assistance, day programs, and career counseling and training, gaining access may be dependent upon funding both locally and nationally. Research what the guidelines are for your area.
  • Research Transitioning Planning toolkits and resources with the help of your child’s team. Autism Speaks has a “Transition Tool Kit” that may help. The Arc- Autism Now also has an excellent list of resources and checklists that can help get you started. The Interactive Autism Network has several toolkits to help plan for job training, college or independent living depending upon your child’s trajectory.