Wednesday, May 27, 2009

Summer Camp

Here’s a great way for you to have some much needed alone adult time …. CAMP!

You want to send your child to camp so they have the opportunity to be with other kids, learn how to build relationships, and develop the skills to problem solve without a doctor, teacher, or their parent around (you know = the cocoon). It builds their confidence and independence while getting them some physical, mental, and emotional exercise.

The Americans with Disabilities Act (ADA) requires that all camps make reasonable accommodations so kids with special needs can attend. This being said, there are many types of camps your child can participate in. Some camps are mainstreamed (or inclusionary) so they are filled with mostly “average” kids and will need to adapt their activities for your child. Some camps are made specifically for special needs children, either by taking many different diagnoses or by focusing on specific issues (hearing and speech, sight, epilepsy, learning or behavioral, chronic illnesses, etc…). You may also see camps just for girls or just for boys.

Camps fall into many different categories. There are non-profits, for-profits, religious, private, national organizations, day camps, weekend camps, and sleepovers (for a week, month, or all summer). You will need to make a list of goals, health priorities, and outside considerations that will limit which camps are right for you and your child.
Be sure to involve your child in this decision! Ask them what they are looking for in a camp.

When researching for camps, check out the American Camp Association (ACA) at Under Quick Links click on “Find a Camp”, then “Advance Search”, to see comparables like cost, camper’s ages, region, activities, length of stay, etc… I would speak to the camp directors about your child and any accommodations that would need to be made, as well as speaking to other parents whose children have attended the camp. Your child may want to speak to the other campers, who may have a different opinion than their parents on how great the camp really is. If you have a question, never hesitate to ask the staff or other parents!!

If cost is an issue, look into applying for scholarships to help pay for the camp admission. You can ask charities and fraternal organizations who sponsor special needs camps. There may even be some state funds available.

Can’t highly recommend camps more! It’s such a fabulous way to give both you and your child a break from the everyday doldrums.

Thursday, May 21, 2009

School Tips

School Tips
This week is a blunt truth blog. I want you to have the real buffet of information, not the imitation politically correct version. I’m warning you now the dose of reality is long and can be hard to swallow, but you’re a big girl and I know you’d rather have the truth to conquer than be stuck in sappy quicksand.

The number one fact you must understand is that school districts have budgets just like you and me. And there is always more needs, kids, and school days than there is money. Right now many districts are doing some major shuffling to keep as many services as they can. You may have to switch schools and teachers. It’s not fun for anyone involved, including the school staff.

So far we have covered IEP’s, 504’s, and LRE’s. For each of these three, you and the staff at the school will determine TOGETHER what is best for your child. You have to understand that there are limits to what schools can do. There are also practical constraints. If your child is in a wheelchair, obviously they will need extra time to get to and from class. This does not mean that the teacher must hold up the class to wait for your child. It means your kid will need to work out a way to get the info they missed and not do it by interrupting the rest of the class. There are 29 other students in the class who deserve an education too and your child is just one of many. I know they are special to you, but they are not more important, above all others, to anyone else. A teacher’s job is to educate ALL of the kids. Not to cater just to yours. That seems severe, and a slap in your face, because you love your child and they take up so much of your time and energy. Your kid IS important to their teacher, just not more important than Johnny and Suzie, and certainly no less important. If you have other children besides your SPED child, you should easily understand this reasoning. All kids are special, some just need more services for everyday living.

There is a huge difference between letting your child fail in order to learn how to get back up and not giving your child the tools to succeed. The school district is required to provide adequate tools for your child but they can’t make your child use the tools or to bend the rules so your child gets an “A”. This is a hard concept for many parents, especially those in the upper grades. Schools aren’t in the “feel good” business, that’s not in the job description. They want your child to love learning, like school enough to stay, and graduate with real skills, but they aren’t supposed to make the world a rainbow with flowers and smiley faces in the trees.

Even though your child has a disability, you can’t do your kid’s homework for them so they get a good grade, just to make them feel better (or you feel better). And you can’t ask for an extra week to complete a project they could easily get done in one day. If you do that, you are setting them up for big future failures! The real world doesn’t work that way. Their future boss isn’t going to care how big of a bubble you put them in – they expect your child to put in their time and effort to earn the paycheck. So what if they have to work harder than other kids? All people have difficulties to work past (and on the flip side, all people of some talents). The IEP will help monitor how much work they are doing to prove they have learned the lesson properly. Maybe they only have to do 10 math problems instead of 20. It’s the same work, just modified. The key word is MODIFICATION. Not deletion, or excuses, but modifying the lesson so the child can receive the same education as the other kids.

And let’s be real here. Your kid can probably do more than they are showing you. Teachers are trained to pull information out of students. They don’t see your kid as “your little pudding pop”. Remember, your job is to help them stand on their own, not to carry them forever. This task is easier for the teacher who is on the outside and has seen many other students.
My recommendation is to make sure you are assigned to a seasoned teacher ….someone who isn’t on their first or second year. New teachers are full of life and ideas, but since they don’t have a routine down yet, they are making frequent changes in the school day routine to see what works for them and that’s not good for SPED kids. I’m not doubting their abilities as teachers, I’m just being practical. Also, teachers, like any other profession, can get burned out. You can “interview” the teachers if you want, but just know that end-of-year and beginning-of-year are not the best of times for you to attempt that. Try for sometime in February.

Teaching styles are different for every teacher, so in the interview ask questions about their style. Are they strict about rules, are they laid back, are they stronger in one subject, what are their plans for field trips, what would they do if a child did ______? Now, hopefully, you’ll get an honest teacher who isn’t just smiling and telling you what you want to hear. Example: “I love children and will make all kinds of accommodations” when they really want to say “Look, I’m tired and want a year of easy kids.” You, of all people, should understand about needing a break. It’s nothing personal against your child. Just keep interviewing and you’ll find a teacher who is up for the challenge. You can then take your request for a specific teacher to the IEP meeting.

*Tip: don’t ask the principal about a teacher. #1 – the principal isn’t in the classroom everyday so doesn’t know exact details, and #2 – a principal’s job is half public relations so you’ll tend to get more “of course we’ll accommodate” when they themselves don’t have to be the teacher actually making it happen. Always start with the direct teachers first, then move to the principal if you don’t feel you are making headway with the teaching staff.

That said, you know your child best and the staff needs to know what tricks work best with your child. Make a list and bring it to the meetings. If he or she needs some quiet time every two hours, then say that. Most likely, your school can provide a space within a classroom or library for some quiet time. If your kiddo does better with a snack in the afternoon, you may have to provide the snack, but they can find a place and time to give it. If he or she needs a special bus for transportation to and from home or daycare, you need to be upfront about it. Does your kid have a special routine at home? If so, let everyone know it and they can try to mirror some of it at school, while you change your home routine to fit the school’s normal activities (eat at same time, quiet time, etc….). Everyone involved is going to have to COMPROMISE, including your child.

If your child is home with you, you need to start prepping for this in the summer! Find out who the teacher is and what their schedule is like. (By May the school already has assigned your child to a teacher for next year, but they might not tell you that in case something changes over the summer.) You can adapt your home schedule over the summer. This will make the beginning of the year so much easier!!! Each grade level and teacher have different lunch times, recess, etc… so sliding your lunch time up or back gradually over the summer will put your child way ahead in August.
Request (politely demand) that your child can go into the school to see their classroom and meet their new teacher BEFORE Back to School Night. That night is crazy! If you have a good teacher, they’ll meet you at the school early. If they won’t, you may want to question why. They could be in a continuing education class or a meeting for the district, or they may just be one of those teachers you don’t want.

If your child has a mental, emotional or social disability I suggest asking for a Triage each morning with a staff member. During this morning meeting, your child will find out if they have a substitute teacher, if the day will look different (fire drill), organize the papers in their backpacks, and see how their mood is. If they are in a funk mood, there is no point in continuing onto class and getting in trouble. The triage can halt the negative pattern so they can be successful the rest of the day. It could be any teacher in the building, but the SPED teacher would be ideal. He or she can then relate your child’s moods to the rest of the team and do extra checks on your kid if necessary that day.

If you haven’t already, you may want to consider getting some of the equipment that the therapists use for your home. All therapist have catalogs you can look at. One place for that is Early Childhood Manufactures Direct at Even if you don’t order from them, they have great ideas for all ages for storage, toys, and helpful tools you can use to adapt your house that may be found at your local superstore or that you can make. Of course, there are other manufactures out there, so shop around.

A good suggestion one mom had was to get an advocate if you don’t feel your concerns are being taken seriously. There are organizations that help parents weed through the IEP process. Because you want to be able to have your advocate in the meetings with you, you will need to find one close to your hometown. If that isn’t possible, many will give you advice over the distance by phone or document. Some services are free, some charge, it all depends. A good place to find out more on advocacy is SNAP = Special Needs Advocate for Parents.

Don’t be surprised if your kids’ (average and SPED) grades drop in Middle and Jr. High School. This time is double tough! They are not babies, but not adults, no way of transportation, no job or money, yet they are expected to act like adults without the adult rewards (rewards as they see them. I don’t see a mortgage as a reward some days). Add all of these feelings to their disability and the usual social stigmas of raging hormones. YIKES!!! Grades are one of the few things these kids can control and they may let them slip to see the consequences. It doesn’t necessarily mean they aren’t learning. On the contrary, they are learning a lot about themselves (and probably some about the school work too).

If the pressure of school is too much, and many things are dropping besides grades, watch for signs of depression! Look for self mutilation, sleeping patterns changing, not taking their meds…. All are red flags of them trying to regain some sort of control. Control is a basic human emotional need. We all need to know the “how’s and why’s” in our world and there aren’t many answers when it comes to “Why me and this stupid disability?” Your kid doesn’t have enough maturity or life experiences to handle everything all at once. Keep the therapist’s phone number handy just in case (yours and theirs).

Each school year brings new changes to the whole family. If you are expecting the disruption you can handle it with better ease. Know that behaviors will erupt and will soon pass once the new routine becomes more comfortable. Know that your anxiety is felt by your kids in low vibrations so prepare your inner self for calm. You are a great woman! You now have more knowledge and power. Take it and run!
And if you are just at your wits end, next week we are talking about Summer Camps!

Wednesday, May 13, 2009

School Vocab - LRE

School Vocab LRE
To continue our vocabulary lesson, “LRE” is Least Restrictive Environment. This is the biggest stickler and fighting point you’ll read or hear about from other SPED parents. The concept is to place your child in a situation that is the least restrictive for their learning = where they can blossom the most. Each child’s abilities will determine their own LRE. Here are a few different scenarios:

*In most cases, LRE means spending most of the school day in the regular education classroom, like everyone else, with some accommodations. That is called “mainstreaming” or “inclusive”. The accommodations could be as simple as having an aid to help with motor skills or a certain seat.

*The LRE could mean being pulled out of their normal classroom for some special classes in another room (usually the SPED room or a “resource” room) a few times a day or week, working on specific skills. For example: a child with Aspergers may be pulled out to work on social skills with a small group.

*For some, the LRE is being in the SPED room with 2-4 other children for all day specialized instruction. This is a “self-contained class”.

*Finally, there are some children who need an alternative school. You need to check your fears in place here – you heard “alternative school” and your anxiety raised – don’t think I don’t know. It’s not the fault of you or the child, but their actions may not make it best for your child to be in a regular school. The alternative schools can provide even more attention as they do not have to educate the masses of kids in the district.

If you Google, or read enough parent chat forums, you’ll probably find someone complaining about LRE. Like all topics, there are some horror stories that get a lot of attention, but they aren’t the norm. Schools aren’t perfect, people aren’t perfect, nobody owes anyone anything. We are a community making sure all of the people in the community are raised up in honor. If you don’t agree with the school’s recommendation for LRE, get another opinion. (Another school district’s procedure, an outside advocate, etc…) Sometimes the district needs some fresh ideas on LRE that an outsider can bring and sometimes they need a gentle nudge to know you are serious. I won’t lie, squeaky wheels get serviced. But similar to you dealing with your kids, use your trump cards wisely with the school.

Next week will be the last segment of school tips until August. I just want you to have all the info you can while the schools are in decision-making mode. Procrastination is not your friend here! Ask now for what you want in summer school and for the next school year. Be the first to ask and your request is more likely to be thought of when money is being allocated…just like your home budget.


Thursday, May 7, 2009

School Vocab - 504 plan

School Vocabulary 504 plan

A 504 is actually Section 504 of the Rehabilitation Act and the Americans with Disabilities Act (ADA). Section 504 is a civil rights law to protect people with disabilities from discrimination because of their disability. There should be a 504 coordinator (usually a vise principal or counselor, but probably not the special education teacher) and a team like the IEP team to help with the accommodations.

Notice that a 504 is not something that guarantees your kid will have an IEP. This is separate. A 504 is basic accommodations to help override an impairment so your child can have the same public education as everyone else….this is not an individualized plan for educational learning…in other words, this is not to accommodate mental or emotional disabilities that effect learning, but accommodations for physical surroundings. For example: your child is partially deaf in their left ear. They can have a 504 plan that states they need to sit in a certain spot in the classroom. That’s it. The kid then has to perform up to the teacher’s standards and receive the grades they EARNED like everyone else.

I have children with each plan. My son with Asperger’s has an IEP, and my daughter with brittle bones has a 504, of which will follow them to college if need be. They both have an adapted day at school with special services. Both plans look and work very similar, but the legal paperwork is slightly different.

In most states, there are programs for children ages 0-3 where you can begin therapies (First Steps, Early Intervention, etc.). You can ask about these at your County Health Department. Starting at age 3, most school districts have an Early Childhood Program you can begin the legal IEP/504 process with to receive therapy and additional help in a half day pre-school class. Start as early as you can to find services! Many times the people at the County Health Department, and at the school district, know of other organizations you can utilize as well if you need adaptive equipment in your home.

Always remember that you are never alone. I know it feels like it, and your chest can hurt with the pain, but the reality is that there are many people who can, and want to, help if you ask. We can find a way together!