Thursday, December 30, 2010

Schedules, Oasis, Rules and Love


I have received many requests to talk a little bit about just what we did for collegeman that enabled him to move from a self-contained classroom into the mainstream. Honestly, I do not think it was one thing above another. It was the totality of what was being done for him and how everyone around him implemented it. The environment that collegeman found himself in on a daily basis (and HSB for that matter) was a tremendously supportive one. From the district level personnel to the janitorial staff at the school, everyone took pride in the boys' accomplishments and in how successful they became.

There is no guarantee that once your child is placed in a self-contained or a special needs classroom that they will be mainstreamed as collegeman was. Truthfully, the reason he was mainstreamed at first, was because our district went to a fully inclusive school district policy. Only under certain very heart-rendering circumstances are any children placed out of district, in special programs, in our town. But the truth of the matter is that mainstreaming with  para support should be the goals set by your district for your child, and then if possible mainstream with just special education teacher support. There are many configurations of education support for children with disabilities (I link to a past post below) YOU need to figure out which one you think is best for your child. Meanwhile, remember too that the law is on your side and that your child is entitled to a free and appropriate education (FAPE) in the least restrictive environment (LRE).


I constantly hear from parents that the professionals either think that their children are not capable of certain activities or are capable of things beyond their ability. When you are faced with a situation like that you do need to pull out the big guns. You may need to have program reviews, bring in doctors, therapists and even hire a lawyer if your child is not getting the support or being held back in some way, or being asked to do too many things too quickly that it results in an emotional shutting down.

Read Wrightslaw about your child’s rights and the rules surrounding reviews, testing and IEPs to get a good head start. (It is important to keep in mind that the rights are your child’s rights and that you as the parent are there for enforcement.) Unfortunately as the law is written it falls to the parent and not some government agency to police the school districts. It is a fault in the law. But at least this does give us, the parents, more leeway in bringing suit if we need to.

Goal Setting.

It is important to remember that proper goals should be set. There may be times that things are very difficult for your child to handle, but, it does not mean that they should not keep trying until they get there. Perseverance is the only way that our children are truly going to learn. However, sometimes even the perseverance needs to be taught. As in the case with HSB, the minute he finds something too difficult or receives a poor grade he shuts down. It has been our constant battle over the years to get him to regroup and to fight the good fight for his own well-being.

No it is not pleasant to watch your child struggle. It is not pleasant to watch your child cry and rage and feel so frustrated that they cannot control their own meltdowns. But you can handle the situation by parceling it out for them. Teaching them to go step by step. Outline for them how everything is to be done. Minimize each step; even break each step down into multiple steps until they learn to handle it on their own.

Schedule their world. Break their days down into hour-by-hour, even minute-by-minute happenings if that is what it takes to get them through the day. Use a white board, or a Velcro board as a visual aide. Have them mark everything when done. If they can’t read, use pictures. Never forget cartooning is a great tool.

Remember too that the goals as written into the IEP should also be challenging in the way that they should not necessarily even be able to attain them in a year. If it is made too easy then the school can say, “oh cured,” and undesignate your child thereby removing their obligation  to support your child. Meet with your child’s teacher, the school psychologist and anyone who has a hand in writing the goals for your child. Makes sure that there are social and emotional goals as well. Many districts will tell you that they only have to concentrate on the educational piece of the puzzle. But they are legally incorrect. Education includes interaction, social goals and emotional regulation. It is acknowledged that it takes the proper development of all of these attributes for a person to be able to learn and glean from their education.

Home

Honestly I found that home is a very big factor in how well your child does. Home needs to be an oasis for your child. School is very hard for them. The academics may not be very challenging for them at the moment, but the interaction, the sensory issues, the sights, the sounds, the smells and the noise can make it very hard for your child to hold it together for the day. When they come home they truly need to collapse in many ways, both physically and mentally.

Don’t be alarmed if the first thing they do is meltdown upon entering the home. Either they will cry over the wrong cup for milk or the wrong snack. They may just break out into tears and not know why. They are just so overwhelmed by their day that they need to let it all out. It’s just fine. Let them, as long as it doesn’t go on for too long and they can stop themselves and regroup. If they can’t you will need to step in and help them pull themselves through it. A hug can go along way in helping calm them down.

Create a calm environment in the home. Give them space to play and just sit. Create a sensory garden for your child or a Zen garden. Where they can have their favorite things without the overload. Let them surround themselves with their little toys and favorite dolls. Allow them to roll themselves up in a cushy comforter (some children do well with weighted vests or we used to put animal beanbags on HSB’s legs when he sat). Provide them with a physical outlet too. We have an exercise bike in the basement and a karate bag. (Don’t forget that that exercise bike has a mommy setting too). Let them get some of the stress out in exercise before they do their homework. If you have a Wii, they have terrific exercise or sports programs that children like too.

Then schedule the homework. Let them help you create the schedule. Put in time and breaks and even use a kitchen timer so they can hear the dings and can relate it back to the schedule. Don’t rely on their being able to pay attention to the clock and do their homework at the same time. Oh and if they want let them listen to music or some form of white noise in the background. Believe it or not it does help them focus.

Also, if you see your child needs help with the homework, by all means help them, don’t do it for them, but be there to answer the questions that they have (here, here, here, here). Help them think through writing assignments and even get them started with topic sentences if need be. Help them find solutions on the Internet and even get them an account with tutor.com if you can’t help them with that pesky new math. (Explain to me what was wrong with the old math…why does every generation of teacher shave to prove themselves by screwing with how we add and subtract?)

The Oasis

 Your child’s oasis I think is part of the larger overall picture of creating comfort for them. When collegeman was little, he used to line up all his toys in a particular order. He would keep books and rocks and videos all together in order of importance. We never knew why and never touched his things. But what we did do is make sure that all his things that he played with constantly were in the center of the house. We did not allow collegeman to lock himself away in a playroom or in his bedroom. Collegeman had a special card table where everything was kept and it was right there with everyone. (Today there is no card table - that ended as collegeman progressed and the table was actually gone within a few years. Today collegeman doesn't organize anything-unfortunately at times. Today collegeman is a total and complete teenage slob.)

It is very essential that no matter what these children do they have social interaction of some kind. Even if that is just you sitting and watching some television while they play with their toys. We turned our main room/dining area/livingroom/ kitchen into collegeman’s oasis.  We did have a couch for us to sit on, and a TV so that the boys could actually watch their videos and their cartoons. We had the Nintendo hooked up to the TV as well. We had the computer in the room so collegeman had easy access to his computer programs and his favorite books were also kept at easy reach.

Everything about the house was geared to keeping collegeman and HSB engaged and interactive. Luckily at this time, HSB did not seem to need a special place for his things. That actually came later for HSB, and there is a special shelf above his desk with all his collections. As I have stated before HSB was never as disabled as his brother, but at the same time, he is also not as determined to persevere as his brother either. (With HSB we are working on that issue, while with collegeman we are trying to calm him down and get him to understanding how things difference in importance.)

So when collegeman came home from his self-contained class, the first thing he did was check his table. Have a snack and go watch his favorite videos. He was allowed to eat on the coach and yes, there was generally a mess. Big deal, it got cleaned up. But one of the best things that happened was that I watched with him. I asked him questions and sang the songs with him and danced dances with him too.

There was a favorite cartoon on the Cartoon Network, called Cow and Chicken. Collegeman just loved that cartoon. We used to sing the intro song and we made up the Cow and Chicken dance to go with it. At times collegeman would even just ask for the song and dance because he liked doing it with me. It wasn’t the song really it was my time and my interaction on his level.


Remember you need to bring yourself into their world. See things as they see it.  Help them to understand their world, on the level and with the view of a child or person with a disability. Figure out the best way to engage your child and they will be glad to engage you back. It is not that they don’t want to be with you. The fact is that they may just not understand how to do it and how to do it well. Use every moment to teach them even how to talk to people, how to ask questions, how to pay a complement and how words have meaning both physically and emotionally. Never take offense at what they do and how they say something. Most times they truly do not understand when they cross a line. It is your job to make sure that they learn to figure out how, why, when and where words and actions are appropriate.

Reality

One very important thing to remember is that you also can’t do everything and be everything to everyone. If it means that that load of laundry gets done another day. You have pizza for dinner or the house isn’t so spotless. Too bad. Our priorities need to change when we have special needs children and our realities need to change as well. Also don’t’ forget to take care of yourself too.

Oh and don’t forget to get the husband involved on the weekends or when they are off from work, in dealing with your children. We tend to think that the hubbies need some kind of break from their work-a-day world so we begin to wait on them when they are home too. Listen there is a big deal difference between making your husband dinner and not having them help with the children. They are their children after all as well, and they should spend time with them. Worried that the husband’s work too hard and need a break. Guess what, so do you. Your job is 24/7 and truthfully with a special needs child it is 26/8. Let them pitch in and let them help. Honestly, in my experience they really want to but don’t know where to begin since they are not generally home. Give them direction and let them be a father to their children. It will do wonders for the child, the husband and your marriage.

Oh and one more very important ingredient in taking care of our children…something we all have an abundance of within ourselves…something we show beyond that which we ever thought possible and that which we ever thought we were capable…our unlimited ability to love.




I hope this gives some of you a general idea about what and how things got done in our house. We still use a lot of these rules when it comes to the boys. I say if it ain’t broke don’t fix it.


In the meantime, it is almost New Year’s and I would like to wish each and every one of you a happy and healthy New Year. May your troubles be few and your joys be plenty in the year to come.


Until next time,


Elise