Research Study: An internet parenting education and support group for mothers with psychiatric disabilities

ImageThe Temple University Collaborative has launched an Internet-based parenting education and social support program, part of a national research study examining the effectiveness of an Internet parenting education and social support program for mothers with a psychiatric disability. Participants will be compensated up to $100 for their participation in this study.  For more information:

–        Visit the study website,

–        email momsupport@temple.edu,

–        or download the study flyer.

Is my child learning in the right setting?

School GirlThe signs were there in 6th grade, my daughter’s first year in middle school. She pulled her sweatshirt hood over her head in class and picked at the sleeves until they were frayed. Teachers said she needed to learn more teacher-pleasing behaviors, look interested, and pay attention. My daughter said she felt like dog poo under someone’s shoe at school.

She and I spent every Sunday afternoon reading social studies chapters, attempting to pull out main ideas and details. Every night, she did two to three hours of homework or test prep for science, math, or social studies (thankfully, the English teacher said just reading was homework enough). My daughter saw a Resource Specialist through Special Education at school, but it wasn’t enough to access the curriculum. She sat in general education classes with information flying past her faster than her mind could take in, sort, and absorb.

I asked the school about a change in placement. “She’s such a nice girl,” I was told. “Give it time. She’ll do better.” I let it go.

But halfway through 7th grade, the situation got worse. I regretted not listening to my gut and requesting a placement change more firmly. Lessons learned?

1. Know the signs that a placement isn’t working:

  • IEP goal data and diagnostic tests show lack of progress
  • your child reports an anxious, downtrodden, or distressed emotional state when at school
  • services available at the placement have been maxed out
  • class or school environments can’t be accommodated any further to meet your child’s needs

2. Gather data that supports your gut feeling that the placement isn’t working. This may include grades, teacher emails, observations of behavior, a log of time spent on homework, or the number of nights there were meltdowns over school.

3. Make a list of what your child needs in a learning environment. Examples:

  • clear instruction with multisensory input
  • peer group with similar skill levels
  • time dedicated to building reading skills, including how to scan for key information
  • reduced sensory stimuli
  • teaching content vocabulary
  • small chunks of homework based on skills she has learned and can practice on her own

4. Review the IEP to identify any goals or services that might need to be added to address skill weaknesses.

5. Ask for an IEP meeting for the team to discuss your request for a change in services and placement. The meeting must be held within 30 days of your request.

6. If your request is denied, ask for the denial to be put in the form of Prior Written Notice so the reasons the district is denying your request — and all the data they used to make that decision — are clearly written out.

7. Consider dispute resolution options (see our Resolving Disagreements packet). Keep in mind the law requires school districts to educate your child in the Least Restrictive Environment (LRE) with supports and services (here is that page in our IEP packet). This means using supports and services to educate your child to the greatest extent possible with non-disabled peers. Before a district recommends a more restrictive environment, the IEP team should discuss if any more supports and services can be added in the least restrictive environment.

I let too much time lapse before I got my daughter into a class that met her needs. Watch for the signs, even if it’s as early as preschool (check out our Transition to Preschool packet, available in English and Spanish, or the shorter bilingual Help! sheet about preschool Special Education placements).

Have You Ever Heard Comments Like These?

ImageHave you ever been told something about Special Education — either in passing or at an IEP meeting — that just didn’t seem right? All of us (parents, educators, and other professionals) at some point have said things we wish we could take back. Here are some actual comments that sent bewildered parents to double-check with Matrix:

  • We only have the speech therapist at our school twice a week, so we can’t offer more days…and actually we need to cut back on how many hours your child gets, because the therapist’s case load is so busy.
  • It is against our policy to have your child’s paraprofessional at an IEP meeting.
  • Your child doesn’t qualify for Special Education because she is too smart.
  • He just needs to try harder.
  • We can’t assess your child; the wait is too long.
  • Your daughter’s off-task behavior isn’t what behavior plans are for. They are for kids who have real behavior problems and are sent to the principal.
  • Until your child’s behavior is manageable, we have to place her on Home Hospital Instruction; then we will consider other placement options.
  • Since your child is eligible for an IEP under Intellectual Disability, she can no longer receive speech services.
  • In order to move your child to a new school, you must first waive your rights to an IEP.
  • We don’t do IEPs in middle school; he would need a 504 plan.
  • Since your child has autism, he has to be in the autism class.

When a comment doesn’t seem to make sense — or leaves you needing to take deep breaths! — here are some suggestions for what you can do or say:

  • “Please put that in writing.” If you are requesting a change to your child’s IEP and are told this can’t be done, ask for the denial in the form of Prior Written Notice (here are details from our IEP packet and from Families & Advocates Partnership for Education).
  • Show me. Sometimes it can help to say “Can you show me where it says that?” Ask to see policies. Keep in mind that school policies can’t be more restrictive than Education Code.
  • State your understanding. Learn the six core principles of Special Education. Refer to the “I” in IEP (Individual Education Plan) — it is a plan to meet your child’s individual needs. Any area impacted by the disability can be addressed in an IEP through a goal, accommodation, or service.
  • Request that the information you think may be incorrect be confirmed with a higher authority. This might be the Special Education Director, your local Special Education Local Plan Area (SELPA), or the California Department of Education Procedural Safeguard Service, 800.926.0648.
  • Ask for data or an expert. “I would like to request an assessment to understand why it is hard for my son to ‘try harder’,” or “Who can join our IEP team to explain my son’s disability? What skills need to be taught so that he is able to ‘try harder’?”
  • Defer. “I am requesting to schedule another IEP meeting so more information can be gathered about my request.”

The National Dissemination Center for Children with Disabilities (NICHCY) has posted additional ideas for how to respond, as has Friendship Circle.
 
Of course, sometimes the shoe is on the other foot! School and district staff hear comments from parents that make them take deep breaths. Some examples include:

  • My child didn’t learn anything last year.
  • I think you are just prejudiced.
  • It’s obvious that no one on the team understands my child.
  • You are trying to railroad my kid.
  • If only you would stop being so hard on my child, her behavior wouldn’t be a problem.
  • I know that my child couldn’t have done what you said he did because he told me he didn’t do it.

Comments can well up from frustration or due to limited experience or resources. Do your part to make the process productive. Read the communication tips in our Advocacy packet. If the exchange grows into a dispute, there are several methods available for parents to resolve conflicts; see our Resolving Disagreements packet.
 
If you learned something from this article, be a parent leader and share it with others! Together, our efforts can reach beyond our own children.

Playing Santa is Sometimes Hard

Kate and Santa

When my daughter Kate (who suffered a brain injury at age 2) was young, we’d go see Santa and take the annual picture. Positioning her on his lap, wiping any drool away, and maybe even getting her to smile meant we had to find the really patient Santa and go when there wasn’t a line of other kids waiting. I knew exactly which mall had that good Santa. Kate wasn’t verbal, so at least she didn’t have a long list for him.

Let’s talk about that Christmas list for a bit. Most kids, by the time they are 3 or 4 years old, have this whole “presents” thing mastered. They’re able to rattle off an amazing litany of toys with very specific requirements. Even if they won’t sit on Santa’s lap and tell him item by item what they really, really, really want, lists are made and letters to the North Pole are sent. In other words, most parents have a pretty clear idea that, come Christmas morning, the toys waiting under the tree will be a hit.

However, when you have a child with special needs — especially one who scores well below the norm in expressive language skills — it’s hard to know what to shop for at Christmas. Should we get age-appropriate toys? That’s much tougher as the child gets older and the options decrease. Should we look at toys or activities that promote development? Can’t I just get her a stupid Barbie? That’s what her sister wanted at that age.

Target Toys

How can you make a child’s eyes light up if she can’t tell you what makes her happy?

I clearly remember trips to toy stores at Christmas, walking up and down the aisles, trying to find something that might make Kate’s eyes light up on Christmas morning, just like my other kids. Many times, I left those stores in tears with another stuffed animal to add to her ridiculously enormous collection, or with another silly toy that could be adapted with a switch she could hit to activate light and sounds. Batteries were never included, so a $7.95 toy wound up costing $49.95 by the time it was adapted and fed four D batteries practically every day. Did she enjoy those toys? I guess so. Did they make her holiday bright? I have no idea.

When Kate’s grandparents, aunts and uncles, or siblings asked us for gift suggestions, we couldn’t help them. No, I needed those rare ideas for myself. Another wrinkle: Kate’s birthday was in mid-November, so if we scored on her birthday, Christmas became that much harder.

Spoiler Alert:  This is not one of those inspirational holiday posts where the true meaning of Christmas is revealed.  I know that in the grand scheme of things, gifts are not what makes a Christmas good or crummy. I also know that my daughter was truly loved. But playing Santa and watching your children open presents that make them squeal is one of those moments that makes being a parent so rewarding.

For most families, after the flurry of wrapping paper settles, the happy shouts die down, the missing instructions (or the tiny but important piece that accidentally got wadded up with the wrapping paper) are found, many of those toys come to sit in the corner, ignored or forgotten, once the newness wears off. I guess we just skipped a few of those steps with Kate.

Kate passed away at the age of 26 — almost four years ago. I miss her terribly every day. Do I miss the frustration and challenge of finding the perfect Christmas present? You bet I do.

Take care of yourself

imgIt should come as no surprise to parents of children with special needs that holidays can add to the stresses already present in our lives. In a survey done by the authors speaking at our Author Luncheon Benefit this coming April  in their book Married With Special Needs Children, some common causes of stress in couples raising children with special needs include:

  • lack of a diagnosis
  • information overload
  • financial issues
  • time constraints
  • mental and physical fatigue
  • dealing with the reactions of others

Give yourself a gift (or two) this holiday season: Take care of yourself! Put on your own “oxygen mask” so you are able to take care of your child and your family. What might this look like?

  • write in a journal
  • exercise
  • take a walk — enjoy nature
  • practice mindfulness…slow down…breathe…have quiet time
  • vent to a friend
  • carve out special moments with your partner, even if only a few moments in the morning over coffee
  • share appreciations and moments of joy
  • give yourself a pep talk if feeling overwhelmed
  • give yourself a “time out” if feeling frazzled (this also models for your children that everyone needs time to regroup)
  • use sayings to focus: “one day at a time,” “first things first,” “this too will pass,” “don’t sweat the small stuff,” “progress not perfection”
  • decide what things are most important and focus on those
  • laugh
  • learn how to ask for help and accept it
  • create informal networks of other parents of kids with special needs to rotate respite times and help each other
  • share the positives about your child, his or her interests and strengths
  • seek out others who understand

The Matrix Yahoo! group can help connect you with other parents (click here to sign up), and our Parent Advisors on the Helpline, 800.578.2592, are great resources for respite referrals and emotional support.