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
Last month we discussed the IEP evaluation process as well as common Special Needs lingo that you would need to understand your initial IEP meeting. An initial IEP (the first one) must be in place within 30 days of the evaluation meeting determining eligibility. Special education teachers often use the term “IEP” interchangeably to mean the formal document and the meeting in which it is discussed.
The Individuals with Disabilities Education Act (IDEA) allows educators to tailor an educational plan for the child so that he or she can reach his or her full potential. That being said, the decisions for how to tailor the education of a special needs child is discussed as a team at the IEP meetings. The first – or initial – meeting can be the most stressful as parents and teachers navigate what is best for the child. Here are somethings to expect at the first IEP meeting.
- Attendance – Who will be at the meeting for your child? Every IEP meeting must have in attendance the special education teacher, district representative (often an administrator, but not required to be), someone to interpret test data, and a general education teacher. Additional members of the school community such as occupational therapists, speech therapists, physical therapists and psychologists could also be in attendance. Each person will sign in to document the meeting.
- Testing Results – During the initial meeting there will be lengthy discussion of what the testing and evaluation process discovered about your child. Try not to get overwhelmed about what each number means but rather what is says about how your child learns best.
- Input from Classroom Teachers and Parents – After the test results are discussed many times a teacher will discuss what they see in the classroom. This can bring the test results to life in how learning disabilities or behaviors are showing themselves in the actual setting. This is a good time for parents to chime in as to what they see as struggles at home or where their child does best.
- Drafting the IEP – Most times the special needs teachers will come to the meeting with suggestions of goals as well as accommodations that will help the child meet those goals annually. While the actual IEP document is not written at the table, the goals, modifications and issues are discussed at length to decide what the IEP will look like. It is only after the input of the team members that the IEP is drafted and mailed to all the appropriate parties. Parents should be an integral part of this process and have the right to agree or disagree with the findings.
It is pretty normal for students to have occasional times in their lives when they feel sad and/or moody. Life events such as a death, illness, being bullied, family arguments, or school stress can bring on periods of sadness. But what if a course of moodiness is more than a momentary event caused by a significant life event?
Depression is extremely common. The World Health Organization reports that globally, an estimated 350 million people of all ages suffer from depression. That statistic indicates that an estimated 20% of the population will experience a period of depression at some point in their lives but it is even more common in people on the autism spectrum. These numbers can seem overwhelming but the good news is that there are treatments and programs that can help. Depression can be successfully treated — with psychotherapy, medicine, or a combination of therapy and medicine — in most cases. The first step is to identify the symptoms and then seek help via school, a primary care doctor or a counselor.
Here is a quick look at some of the symptoms of depression that your child may be exhibiting at school or home.
- show a lack of energy, be irritable, and seem down in the dumps for no reason
- withdraw from friends and family
- not be able to concentrate in class
- be defiant to teachers and other school staff
- ask to go to the school nurse often
- show significant weight loss or gain in a short period of time
- talk about death or suicide
- engage in risky or self-destructive behavior (drinking alcohol, taking drugs, or cutting, for example)
- need additional time to complete classroom and homework assignments
- miss class time due to doctors appointments, hospitalization, or inability to attend classes because of depression
- need to go to the school nurse for medication
- need short breaks throughout the day to avoid feeling overwhelmed
For more information and resources on Mental Health and Autism
Interactive Autism Network
National Institute for Health
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.
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/Therapist – A Physical Therapist supports school staff in the area of gross motor. Gross motor focuses on larger muscle sets and include walking, throwing, climbing.
Studies show that reading is beneficial to children in many ways including social growth, intellectual progress, and emotional understanding. But how do you encourage your child to develop a love of reading? Here are just a few ways to integrate reading into your life and help your child develop a lifelong love of books.
- Read to and with your child for 30 minutes a day. Talk about what you have read and find books that intrigue or excite your child.
- When a child is an infant or toddler, supply lots of books to look through and make reading a part of their daily routine either at bedtime when he/she is more likely to be sleepy or as another part of your daily activities.
- Go to the library and get your child his/her own library card. The idea that they can borrow and read anything opens up an amazing world for children.
- Model good reading by reading books for enjoyment yourself.
- Write notes to your child in their lunch or around the house that they will want to read.
- Put signs around the house that label items.
- Play games to find words and letters while you are out doing errands.
- Work with your child’s school to find ways to encourage reading.
- Create a cool place to read in the child’s room or playroom. A tent or nook can really make reading fun.
- Listen to storytellers at story hour.
- Don’t be too picky about what books your child is reading – any reading is good reading.
- Listen to audiobooks in the car instead of playing on handheld devices.
- Read as a family.
- Take field trips to places he/she has read about.
- Encourage your child to write a story themselves.
- Praise any progress in reading.
- Give books as gifts. There is just something about having books to call your own that every child should experience.
- Text your child.
- Have fun! Reading should be a joy not a chore so make it fun in your own way!
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.
- 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.
- 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.
- Practice doing daily exercise even if it is only a quick walk around the block or yoga stretches in your bedroom.
- Cut down on caffeine and alcohol. These may make you depressed or on edge.
- Pet your dog or cat. Dog owners have been shown to be less stressed out—most likely thanks to having a buddy to cuddle.
- 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.
- 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.
- Laugh often. Parents who are stressed often find stress reduction in talking and laughing with other parents who are in the same boat.
- Physical touch can help. Stress can be reduced when you hug, hold hands, snuggle or kiss.
- 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.
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.
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.
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.
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 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