Monday, May 29, 2017

SATB2 Grocery Shopping

One thing Chelsea's teacher suggested for this summer that I LOVED was to encourage her to be more independent in the community! So today, we did an independent grocery shopping trip!

Step #1: Make a list
For Chelsea's list, I did dotted outlines of the words "CHELSEA'S LIST" for her to trace.

Then, I had her cut out a few pictures of things she likes from ads, and tape them onto her list. Chelsea picked apples, blueberries, and ice cream.

Step #2: Go to the store
At the store, I wrote "29" next to the ice cream for her to find the aisle that the ice cream was on. The produce is right by the front entrance, so I didn't worry about that.

Step #3: Pick out the foods on list
Chelsea was in charge of finding everything by herself, and picking out the kind of each food she wanted. She LOVED the freedom, and wandered around looking for things, but did a good job! I was impressed!

Step #4: Pay by herself
I wanted to have different dollar bills for her to look at and decide which one was enough, but I made the bad choice of taking Chelsea shopping on a holiday, so people were not very accommodating with how slow we were. But Chelsea put everything up on the conveyor belt herself, and paid!

Step #5: Enjoy the foods
After we got home, I let her eat her apple and decorated her ice cream with blueberries, and she was so so happy to eat the foods that she picked out!

  • It was super difficult for me to rein in on my prompting, and to not say "Did you look by the front door for the blueberries?" or "Are you SURE that this isn't the aisle?"

  • I'm going to be doing one of these short shopping trips each week so that Chelsea gets used to doing some grocery shopping for herself. Good skill to have!

Tuesday, May 16, 2017

Anxiety and Depression

Based off of the notes I took while attending the workshop "Anxiety and Depression Too? What Do We Do?" in Utah:

First, think back to when you had a newborn. The sleepless nights and how tired you were, the constant crying, all the nasty diapers, you had no idea what the baby needed, if baby was hurt and couldn't tell you, and if you would ever figure out this whole parenting thing.

Now, can you imagine having that newborn's needs, times 15 years, and add in puberty, more complex needs, the child being stronger and able to seriously physically harm you, and STILL having those same newborn needs? (Can you imagine giving 15 YEARS of that level of care?)

Would YOU be overwhelmed? Welcome to special needs parenting stress levels!

Now, let's start with a couple statistics:
  • 35-65% of children with special needs have anxiety and/ or depression
  • 40-70% of parents of children with ID (intellectual disability) have anxiety and/ or depression
  • 25% of caregivers meet the diagnostic criteria for major depression

Why is it so common for families containing a special needs child to have such high levels of anxiety and depression?

  • Parenting a child with ID is DIFFICULT! Exhausting!
  • You will feel like you have to fight everyone- insurance, government agencies, schools, and managing to still be "therapy mom"!
  • There could be a genetic component
  • For the child, they are used to failure, so they expect failure. Not very encouraging
  • The high level of needs in addition to typical daily tasks is overwhelming
  • Marriages are VERY strained in special needs parenting! The divorce rate skyrockets for this group

"Having a child that has a disability, it's all-encompassing. You could see how people would lose themselves" -Dr. Fred R. Volkmar,  director of Child Study Center at Yale

Symptoms of Depression
Meet 5 or more of the following:
  • Depressed mood most of the day, every day (feels sad, hopeless, empty)
  • Diminished interest or pleasure in activities
  • Significant weight loss or gain
  • Insomnia or hypersomnia
  • Psychomotor agitation or retardation (doing things really fast or slow)
  • Fatigue or loss of energy
  • Feelings of worthlessness or excessive guilt
  • Diminished ability to think or concentrate or indecisiveness
  • Recurrent thoughts of death

"Parenting a child with ID increases the risk of provoking feelings of loss (i.e. of the perfect or dreamed of child and of one's personal freedom), helplessness (i.e. experiencing high stress, not being able to change the situation and not being able to get the help one needs) and failure (having a child with difficult behavior and not being able to pursue one's personal goals in life)" -Depression in Mother and Fathers of Children with an intellectual disability

Hopelessness Scenario:
Sabrina is worried about her son, David, who has ID and Autism. The school has offered an IEP, but not one that she feels will meet his educational needs. The school told her to "take it or leave it". She wants David to have a better education, but the school tells her that they are professionals and know what is best.

She also was on the phone during her lunch break with her insurance company, who said that they only offer coverage for "rehabilitative therapy". If he never had skills to start with, then they won't cover anything.

She also called to get David on Medicaid, but the waiting list is 14 years long. "By the time he gets any services, he will already by 20!" Sabrina sighs. David's doctors have recommended an immediate treatment program of 3x/ week of speech therapy, and 2x/ week of occupational therapy, and 1x/ week of physical therapy, plus 20 hours weekly of ABA.

Speech therapy is $90/ hour, occupational therapy is $120/ hour, physical therapy is $75/ hour, and to add ABA... How could she ever manage to pay for anything? She was barely making ends meet as it was, working as a secretary at a legal firm.

David is getting stronger by the day, and his meltdowns are harder and harder to handle, and it feels like they are becoming more frequent as well. He has never even said "I love you".

Sabrina buried her face in her hands, tears leaking through her eyelids. David's father had left a year before; this wasn't the family he had imagined, and it certainly wasn't how Sabrina thought life would go either.

Loss of Motivation
Unfortunately, there are WAY too many Sabrinas and Davids. Is it any wonder that parents have a loss of motivation? What parent can make time for personal leisure pursuits while they feel like they are drowning in demands?

Parents lose touch with themselves and focus all their attention on their child's needs. Then when they do try and take time for themselves, they feel guilty for doing so and not focusing on their children's needs 100% of the time.

Poor Appetite or Increased Appetite
Stress affects people differently. Some are unable to eat, while others turn to food for comfort.

A parent of a child with special needs and/ or behaviors may have increased anxiety, worry, or preoccupation that may affect his/ her appetite, and self-soothe by using food or other substances.

Insomnia or Hypersomnia
Kids with special needs often have sleep problems (frequent waking), while directly affects the parents as well- the child will come and wake the adult.

Almost 100% of people who are chronically sleep-deprived will head towards depression.

Parents of children with special needs may begin to sleep more during times when their children are not present as a means to escape their feelings and stress

Fatigue or Low Energy
The day to day obstacles and/ or routines of parents with special needs children can be exhausting and the constant anxiety can begin to wear on parents emotionally and physically

Low Self-Esteem
Parents of children with special needs often feel inadequate as parents, frustrated because they are unable to handle their children's behaviors or meet their needs on their own.

Parents sometimes feel responsible for their children's diagnosis

Parents sometimes feel shame over their feelings and needs around their children's disabilities

Poor Concentration or Difficulty in Making Decisions
Constant stress and overload may begin to cause distractibility, mild memory issues, and poor concentration (I call this my "Mommy brain")

Information overload or insignificant information may cause a parents to become uncertain and lead to inability to make sound choices

Social Isolation
Parents of children with special needs sometimes feel isolated from other parents, supports, family, and/ or the community

At times, parents may feel some embarrassment surrounding their children's behavior or their inability to handle those behaviors in public, so they keep themselves and their children secluded from the public

Isolation Scenario
One of Chelsea's school teachers told me about one of the students they had taught previously. This child (6 years old) had only ever been at his home and school. No trips to the park, never been to the grocery store, or to mail a letter at the post office, nothing. Home and school were all he knew.

The parents did all their shopping online, because it was easier than taking this child out in public. Anytime they needed to leave, the boy got a babysitter.

How many times have you heard, "It's not like they will go to kindergarten in diapers and not talking!"? Some kids do. But usually they are "shielded" from the public, in separate schools or a back classroom.

I LOVE how Chelsea's current school does lots of inclusiveness. Chelsea's mainstream classmates are always eager to volunteer to be her "buddy" at recess, or lunch, or to show her what to do in PE. If you have typically-developing children, thank you for teaching them to be kind and patient with children who have special needs! It is greatly, greatly appreciated!

Grief Cycle
The grief cycle isn't just for when someone you love dies. Any time there is a change in life's circumstances and/ or individual's expectation of their life, there is a grieving process on some scale

Parents may feel anger, denial, hurt, etc. of grief, but may not acknowledge those feelings and, therefore, never more through those feelings in a healthy way

Inability to process and deal with the different stages of grief may lead to discontent, lack of acceptance, frustration, and unrealistic, or even no, expectations

Stages of the Grief Cycle
  1. Shock and Denial- avoidance, confusion, fear, numbness, blame
  2. Anger- frustration, anxiety, irritation, embarrassment, shame
  3. Depression and Detachment- Feeling overwhelmed, feeling "blah", lack of energy, helplessness
  4. Dialogue and Bargaining
  5. Acceptance- Explore options, have a new plan in place, feeling empowered, security, self-esteem, having meaning
"It's important to expect a roller coaster ride. Remember as you ride, you are going to come to loops and twists; enjoy the good times, but don't be surprised by the bad. Where you are isn't where you are going to stay"

Financial Strain
There is no way around it- it can be quite expensive to raise a child with special needs. Between the cost of treatments, services, therapies, and medical expenses, many families accrue a great deal of debt.

Many families won't qualify for assistance with the cost of care due to their income, which is sometimes only barely above federal income guidelines.

Financial stress is already one of the main causes of marital discourse and can lead to feelings of hopelessness

Lack of Support
Some parents have a sufficient support system while others do not. Some parents are raising their children solely on their own. Some do not have family or community support.

Lack of support can further the feelings of isolation and allow the parent to continue in his/ her negative or unproductive thinking and behaviors.

Lack of Resources/ Help
Parents aren't always aware of the services that their children are entitled to and, therefore, struggle to meet their children's needs.

Parents don't always qualify for assistance with some resources due to income requirements, but those parents aren't always able to obtain those services on their own.

Inability to access resources or lack of knowledge that there is help available can lead to increased worry, frustration, hopelessness, stress, and sometimes desperation and impulsivity.

Symptoms of Generalized Anxiety (3 or more)
  • Restlessness or feeling on edge
  • Being easily fatigued
  • Difficulty concentrating or mind going blank
  • Irritability
  • Muscle Tension
  • Sleep disturbances

Anxiety Profile
  • Physical Reactions
    • Sweaty palms
    • Muscle tension
    • Racing heart
    • Flushed cheeks
    • Light-headedness
  • Behaviors
    • Avoiding situations where anxiety may occur
    • Leaving situations when anxiety begins to occur
    • Trying to do things perfectly or trying to control events to prevent danger
  • Thoughts
    • Overestimation of danger
    • Underestimation of your ability to cope
    • Underestimation of help available
    • Worries and catastrophic thoughts
  • Moods
    • Nervous
    • Irritable
    • Anxious
    • Panicky

What do we do?
  • Basic responsibilities for self
  • Take care of the caregiver
  • Action versus Inaction
  • Live in the present/ mindfulness

Care for the Caregiver
How many dozens of times have you been told that you (as a parent of a child with special needs) need to take care of yourself?

Mary Thoughts
I remember thinking, "Cool, so when am I supposed to fit in this self-care? Am I supposed to do squats during therapy? Read a book instead of doing home therapy practice? Maybe watch a movie while the rest of my family needs attention?"

BUT- the times when I did do things for myself- do a community play, or read a book that I wanted to (not about seizure/ genetic disorders/ learning disorders), I felt so much better and happier!

My husband sent me on a week trip to Hawaii with my sisters 2 years ago, and at the time, I thought, "I don't deserve a trip anywhere, I am barely hanging on as it is!" but I cannot even describe how happy I was all that time!

Treatment for Depression

  • Cognitive Restructuring
    • Thinking "I will figure this out" rather than "I can't handle this"
    • Catch your negative thoughts and change them
  • Medication
  • Improving your interpersonal relationships and support system
  • Activity scheduling
    • Find and plan something to look forward to!
    • Work on your marriage- dates, getaways

Treatment for Anxiety
  • Cognitive restructuring
  • Relaxation training
  • Progressive muscle relaxation (look up on youtube)
  • Controlled breathing
  • Imagery
  • Overcome avoidance (predict it!)
  • Mindfulness
  • Medication

Other Ideas
  • Find someone to talk to about your feelings
  • Attend a support group
  • Talk with your health care provider
  • Ask for help (family, friends, neighbors)
  • Sleep!
  • Develop a GREAT sense of humor!
  • Exercise
  • Good nutrition
  • Get a massage (try 15 minutes from your partner! It reduces depression)
  • Pray, meditate, read

When Should You Seek Professional Help?
  • Ongoing and/ or chronic depression
  • Ongoing anxiety
  • Suicidal thoughts
  • Dramatic Mood Swings

Monday, May 8, 2017

Structure and Routine

Kids, and particularly special needs kids, NEED structure and routine! I went to an excellent workshop about this exact subject, presented by Chelsea's phenomenal kindergarten teacher here in Texas. Some notes from that workshop:

Why Are Structure and Routine Important?
  • Visual assistance allows kids to make mental preparations of your expectations at home
  • Physical structure at home helps them to become more independent with their responsibilities
  • Structure MUST be consistently used each day
  • Routines develop as structure is set into place

Teach Expectations
  • Expectations provide boundaries, which help kids become independent
  • Expectations teach the students to create a safe self atmosphere
  • Expectations teach them to be proud of their accomplishments
  • Expectations teach them to respect their parents/ family members/ teachers
  • Expectations teach them to manage their own behaviors

When Expectations are NOT Taught
  • Child will do what they want without regard to what parents have asked
  • Child does not learn to participate with home activities as they occur with the family
  • Child becomes disrespectful to parents
  • Child doesn't learn what it means to be proud of their accomplishments
  • Child does not learn how to follow through with activities that they should be doing independently
  • Child doesn't learn to manage their own behaviors

Physical Structure
  • Everything has a place and student is able to see it
  • Organization provides an environment that is understandable and calming to the student
  • Less chaos in the environment
  • There are no questions as to what is expected
Goals for my someday study center!!!

Visual Directives
This was something I thought was really cool! The idea is, instead of the child waiting for you to give them a verbal cue, you give them a visual one, preferably with the child demonstrating the correct behavior in a picture. This could be used for:
  • Table manners
  • Church behavior
  • Play time behavior
  • Manners out in public

Benefits of Visual Schedules
  • Predictability
  • Ease of transitions
  • Easier to make changes in routines
  • Independence
  • Carry over skills from school to home
  • Expectations in one environment carry to another

I was SO proud of myself for making this!

How to Make a Visual Schedule
1. Cut out the pictures you want
2. Laminate them
3. Put rough Velcro on the back of the pictures
4. Put soft Velcro on a stick (or the wall, or wherever it will go)
5. Sequence the pictures in the order of events that will occur
6. Keep extra pictures in a baggie easily accessible to you

Idea Corner
  • Make a poster with pictures and house rules like "Keep hands to yourself" or "Quiet voice" (I use the same language as the school for optimal carry-over)
  • Make "First/ Then" cards. Use pictures for activities, and the use it! FIRST speech, THEN art. FIRST reading, THEN snack.
  • Use timers
  • Make a chore chart
  • Keep items organized and neat, so child will know what to expect and where to find things (and consequently, where to put them away!)
  • Use visual routines to help with things like
    • Morning Routine
    • Bedtime Routine
    • How to Take a Bath
    • How to Go Potty
    • How to Wash Hands

Tuesday, May 2, 2017

Start Signing!

One of the questions I get asked most often with Chelsea is: "Is she deaf?" followed closely by "Did you know ASL before you had her?"

The answers: No, she isn't deaf, and no, I didn't know any ASL before I had her. I think I knew the signs for "more" and "milk".

But learning ASL was seriously one of the best things I have ever done, and so good for any kid- deaf, hearing, special needs... EVERYONE SHOULD SIGN!!!!
Chelsea being super lucky and meeting Rachel Coleman!

My favorite way of learning early sign is with the SIgning TIme videos. The Signing Time company has a FAQ about ASL. They have videos about zoo and farm animals, household chores, potty training, my favorite things (verbs and fruits), family...

How Should I Start Learning ASL? Local libraries or your local early intervention library should have a bunch of Signing Time videos. Watch them! Watch them with your kid and do hand over hand, or pop them in and watch while you cook dinner.

If you think they are too juvenile, then too bad. Watch it anyway. They work! I cannot even say how many adults I have told how to sign a word they ask about, and they forget it a week later.

Chelsea signing "owl", her second favorite animal!

With Signing Time, they show the word, show the sign, explain why the sign is that way, and then have multiple people sign it, say it, show pictures of the word you are learning, then sing songs with those words. Repetition works for EVERYBODY!!!

I liked watching the videos with Chelsea, and showing her "how" to watch them- saying the word aloud, then practicing the signs every time the word was said. I demonstrated the signs, then did hand over hand.

For a Typical Child:
For a "normal" kid with average intelligence, they should pick up signs really fast if you are consistent. I would pick 2-3 highly motivating signs, like "milk" or a favorite toy, and really focus on doing hand over hand and teaching those. Once they get that signing will get them cool stuff, they will learn it just as fast as you can teach it!

Chelsea has a "typical" brother 2 years younger than her, and after just watching signs I used with Chelsea, he started signing back at 8-9 months old and had an explosive vocabulary (signed and verbal!) by 1 year old.

The myth "If you teach a kid to sign, then they won't talk" is a big bag of NOPE. Little mister was talking in full sentences at a 14 months old. If anything, signing encouraged him to talk more and got him accustomed to language.

For Special Needs Kids:
It took Chelsea months and months of me doing hand-over-hand, consistent repetitions for her to understand the signing. I always tell parents that the first 10-20 signs are the HARDEST to teach these kids. After that, they have figured out that their wants are being met, and they feel successful in their communication attempts.

Now, this is HARD. It takes a LOT of work to teach the signs and immeasurable dedication to not give up when your child hasn't caught on after the 8,491st repetition.

BUT, it works!!! Chelsea knows more than 700 signs, and will approximate many signs with her verbal approximations, which increases my chance of understanding her wants. In the above video, she said, "Mommy please push me high"

  • Your child will be able to communicate with you!
  • The hungry/ hurt/ thirsty/ tired/ bored questions will be answered!
  • You and your child will be able to talk to deaf people, who are the most HILARIOUS story tellers in the world, by the way
  • You can scold your child in public and everyone who doesn't know sign thinks it is adorable that you sign, so no stink eye
  • Your child will feel successful and accomplished!
  • It is the perfect language for visual and/ or tactile learners
  • We use ASL as verbal prompts, one of the reasons Chelsea has some speech!