Holiday Joy, Goodbye, Holiday Stress

Happy Holidays!  Sounds nice, but for those of us who have children who need routine and don’t handle change well, it’s a sentence to Whimper & Whine Purgatory.  STRESS!

When we think that our holidays will be like everyone else’s, we are inviting stress.  When we break a rigid child’s routine, we can’t expect joy–we can expect resistance and stress.  Parties are major non-routine items and if your family is a partying one, expect stress.  But don’t just cave in to expecting misery with stress.  Do something about it — get proactive for yourself and your family to predict where the problems will arise.  Prepare preventive measures or figure out a way to reduce the impact.  If stress is in the flow, you don’t have to go with it.

We are the families that live with different expectations.  We don’t expect great behavior from children unable to produce it spontaneously.  We still have to coach and remind and (sigh) timeout.  But we can’t overwhelm them with demands to be perfect when visitors are around and our visitors should have some coaching to know what to expect and what they could do to help things go smoothly.

Noise affects many neurologically-different children during these days of festivity.  So avoid the noise–stop briefly at a party, leave a gift, goodbye, and everyone is still in good humor.  I always knew the daily schedule of subjects at school, and we took time during our day to bring some “study” and reading from school into play.  We didn’t suffer as much in lost skills and we still had some of the school routine to balance the unease of several days of unscheduled time.  When a child is not yet overwhelmed but you’re seeing the signs, offer a choice of two ways to avoid becoming overwhelmed.  “It’s getting noisy in here.  Shall we go out in the yard for a while or shall we go for a little walk?”

The riotous moments of breaking a pinata can send the hyperactive child straight into “We can’t stop being excited.”  You know it’s going to happen, so don’t plan the punishment. Instead, let your child take a few swings at the beginning and then take him out of the room until the pinata has broken.  He will get excited again, but he won’t be skyrocketed out of control.

We know not to expect an autistic child to give instant hugs and kisses for grandparents who haven’t been here since last year.  We know the child in the wheelchair is used to the dimensions of the house, but it’s harder to navigate with several people around who don’t know how much space to give a turning wheelchair.  (Sorry Aunt Peggy’s shin, Sorry Uncle Frank’s toes…)  We know what the impulsive child who just learned about spitballs is going to do, and while we warn him, we also warn guests.

And we do NOT back down on consequences even if guests plead,”But it’s a holiday, Mom.”  We remind the guests, “With this child, consistency is critical.  No consequences today because of a Holiday will mean several days of Helliday afterward.  Impulsivity will demand he repeat the undesired behavior as many times as it takes to get us to give in–after all, we already gave in, so why shouldn’t he think it’s going to work out that way again?”  If there is further pleading for mercy for your child, you can mischievously ask, “If you want to support him, how about sharing in his consequences?”  Then deal with your child on the spot–no waiting for later.

Your children are special, more unique because of their disabilities.  There will be bright moments, happy times during holidays.  We just love our children as they are and try to smooth the way for them.  In defense of our parenting skills, if anyone disparages our child, just invite them to walk in your shoes or the child’s shoes for a while and then smile smugly.  “I will forgive that comment if you’ll forgive my child for not being what you think of as normal.  He didn’t choose it, you know.”

Now, what do you foresee as rough patches in the next few days?  How about sitting down with a couple of cookies and egg nog while you plan your potential escapes from stress?

By the way, cookies eaten while planning to avoid stress have NO CALORIES.

 

 

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Advocacy Tips: 1–Educate Yourself

Hello, Parents!

This week I want to discuss some tips for how to advocate for your child’s educational needs.  We’ll use 5 topics:

1. Educate yourself.
2. Focus only on the facts.
3. Leave emotions at home.
4. Don’t make things go personal.
5. Be realistic.

Each day I’ll elaborate on each topic so you can start applying information to your child’s case in useful ways.

Educate yourself.  Schools provide special education according to:
special education laws, regulations, and procedures,
civil rights laws that help prevent discrimination,
privacy and confidentiality laws, and
accountability laws.

You can’t use a system effectively if you don’t know its rules.  These laws are the “rules of the game” for special education.  I know it looks massive that there are five different sets of law we must know and use, and we are not attorneys.  However, these laws were all written so private individuals like ourselves could read, understand and use them.  You don’t need to learn it all overnight. Just read through it now so you know what is in there.  Learn those parts that you will need for your most current issues in advocacy.  Eventually you’ll know it thoroughly.

Study the Individuals With Disabilities Education Act (IDEA), the Act that started special education in public schools.

Learn Family Rights in Education and Privacy Act (FERPA) so you will know the rules about confidentiality of all the documentation and services for children in public schools.  This is a short piece of law, and it isn’t hard to follow.

Take a look at No Child Left Behind (NCLB) so you have an idea how this act benefits children with disabilities.  The whole point of this law was to create new levels of accountability to assure that schools/school districts don’t ignore children whose education is difficult.

Know Section 504 of the Rehabilitation of the Handicapped Act of 1973, now renamed Rehabilitation Act.  This is where we get the phrase “equal access” and the concept that there must also be equal effectiveness and equal opportunity.

Know the Americans With Disabilities Act (ADA) well enough that you know how to back up what you say about IDEA and Section 504 with ADA clout.

All these laws were written in non-attorney language so average citizens can read and understand them.  Your nearest Parent-To-Parent group conducts training sessions or workshops on these laws, and even if you can’t go to one of those, they can help you.

Go to your state’s Department of Education website or telephone their offices of special education and ask for copies of the Board of Education Rules/Regulations about special education and the matching policies and procedures.  Don’t forget to specify that you want the ones related to special education or you will only get the package for regular education.

Get and know your state’s laws regarding special education.  Every state must have laws for how it plans to follow the federal laws and there will be matching laws for each part of IDEA.  (This is easier because often these laws are very similar to the federal laws.  But there will be differences, and you need to know them.)

Your ultimate power in IEP meetings will come when you carry these books with you with all your bookmarks showing, highlighting on the pages for the clauses that concern your child’s case, and you can refer to them on the spot whenever you encounter resistance to what you know your child must have in order to learn.

The website at http://www.ada.gov/cguide.htm#anchor65610 contains summaries of these laws and resources for where to call for help.

Tomorrow:  Focus on Facts