I had planned to write a post about the school’s holiday program which we went to yesterday, but when checking my email I came upon this news story.

Suicide Prompts School Policy Criticism

The bottom line is that an autistic 13 year old boy hanged himself in the school’s “time-out room,” which was essentially an empty room used for solitary confinement. As the article itself says, it questions and criticizes the practice of putting special needs kids in a room by themself to help them calm down during aggressive episodes.

I know a lot of people are outraged at the thought of their kids being given that kind of time-out. As a result, my thoughts on this are not popular with a lot of special needs parents. I have a severely challenged son. At 11 he is mostly non-verbal. He’s only been potty-trained for 3 years. My son can be sweet, but there are times he can be downright scary. My son has gotten out of control before. He’s destroyed furniture, attacked his siblings, and tried to strike me. I know firsthand what it’s like when you have a child, who is nearly as big as you, and stronger than you, freak out and get physical. Thankfully it’s hasn’t happened too often, but when it does it’s terrifying. I love my son, but when I think of a situation like that at his school (and there have been some too), my first thought is for the OTHER kids. Granted, I do expect the school to worry about my son’s safety, and I expect them to treat him with dignity. However, if Raif is going to hurt someone and can’t be controlled, then I understand that the other children and staff need to be considered..and protected. I mean, on the flip side I would expect that the school would be concerned with Raif’s welfare if one of the other kids in his class wanted to harm him.

Is locking a child in solitary the only way? I honestly don’t know. However I do know there have been times at home when I have had no other choice but clear the room and sit alone with my son until an episode has passed. Granted, there is a far cry from allowing a child to have a “time-out” in their bedroom rather than a secluded room. But knowing how bad these things can get and what little resources schools have, I am not sure if a padded, quiet room is inappropriate. As awful as it may sound on the outside, in many instances this is what the child *needs*–not simply a punishment tool. Particularly in cases when they can hurt (and possible kill) someone, I don’t think we can just arbitrarily abolish this means of containing a violent child.

As with all things like this, there is the potential for abuse. I do think there needs to be oversight and guidelines that should be strictly adhered to. The case in question had a few issues that were red flags. The room was actually more of a “cell”–stark and the only window was covered. Apparently the child was not being directly monitored. And the child had something with him that he could use to hurt himself. Those are the areas where the school went wrong. Even when a child is being confined, their health and care should be highly regarded. Raif has a behavioral management plan and part of it includes a detail of what steps the school will take in order to keep everyone safe, including Raif. There is focus on assuring Raif doesn’t hurt others, but also that he doesn’t hurt himself. That’s what is at issue here. Did the school take all the steps to assure the child who was being secluded was kept safe, not necessarily the fact that he was put in a room in the first place.

As I mentioned, I really wanted to post something happy today, but this article struck me. Granted, my heart goes out to those parents who lost their son. It truly is a tragedy and I can only imagine their sorrow–particularly since I could easily be in their shoes. What put me off, though, was the judgmental attitude of the article. Working with these kids can be very hard. It’s easy for the outside media to point fingers and make judgments when they are not there, don’t know the situation, and in most instances have never spent any time with kids like this. It’s a whole different world with them, and in the middle of a bad episode it can be a very scary world too.

If nothing else, these instances do bring attention to the abuses in the system and the flaws. However, I do hope it’s an opportunity to fix it and make it better/safer rather than to make a decision that is rash and not well thought-out, and have it lead to a whole different set of problems.

The other day we were making Cakes in a Cup sets. Our plan was to make the gifts and then allow all each of the kids to have one for a treat. However, things went a bit off course when we found out the recipe wasn’t quite right, and we ended up having to do a bunch of testing. If you’re really interested about that, you can read more here.

As we were making our modified version, the kids were all delighting in taste-testing each batch. Raif came into the kitchen and I told him that we were having cakes in a cup and asked him if he wanted one. His face lit up. “Cake?” He immediately ran out of the room. Most of the time, that would have been it. Raif is notorious for doing that kind of thing, making a statement and then going on his way. This time, however, he came back a few minutes later and said, “Birthday Cake.”

As I have explained before, Raif has some associates which holds steadfastly to. Granted, we do have cake other than on birthdays, and he knows the difference at those times. But, on this particularly night, he wanted birthday cake. Raif then pulled out a small scented candle, which he proceeded to put on top of the small cup-cake; I suppose it was the only candle he could find. He then started gesturing for me to light it. I laughed and got a traditional birthday candle out of the drawer and put it in the cake. He sat down, readying for the ritual of song and blowing out of the candle. I called the other kids in. Before we started to sing, however, I worried. Raif does understand his birthday. Actually, it’s only been in the last few years that he’s wanted to do much participating in opening gifts and the other ritual aspects of the day. I didn’t want to confuse him, making him think that it was actually the day he turned a year older. So, after a moment, remembering the song from the Disney version of Alice in Wonderland (one of Raif’s favorite movies), I started singing, “Happy Un-Birthday to you…” All the rest of the kids joined in. It was so funny, watching Raif smile as widely sa he would were we at Chuck E. Cheese or somewhere else having a party. Once we were all done, Raif huffed in and blew out the candle…and then he left the room and didn’t come back.

Raif eventually sauntered back in about 15 minutes later. I offered him the cake, to which he made a gagging noise and ran out. Yes, that’s his typical way of telling us he doesn’t want to eat a food…something I’m sure he picked up from some cartoon.

So, it was his unbirthday, and for Raif the cake meant nothing more than a song and a chance to blow out the candle. A little bit of joy for a child who is trapped in a world where not much really appeals to him or makes him overly happy. It was nice to be able to give that to him. I just wish it was that easy all the time.

From our family to yours…

The California wildfires were tragic, as hundreds of people lost their homes. One story hit me in particular. That of Jonathan Reyes. He’s an autistic boy who lost his home in the fire, along with his prized possession–his Hot Wheels collection. It was heartbreaking for me to read the story of how he and his family sifted through the ashes of the home. While Jonathan’s home cannot be replaced, thankfully part of his world has been. Mattel sent the boy a bunch of Hot Wheels cars, and others have offered donations to help.

Thing is, I think this is an autistic parent’s nightmare. I often worry if something happened and we had to leave our home. Heaven forbid in something unexpected like a fire. But what about a scenario many more people are facing right now, like the loss of a home due to foreclosure. It’s hard enough sometimes just getting through life, worrying about the basics, but when you tie in the particular needs of a challenged child, it can be even more complicated, and scary. In our case, Raif can’t even communicate well. Right now his frustrations over seemingly insignificant things comes out in the form of aggression. I can only imagine after something like that. Not merely the loss of a home, but perhaps the loss of a family member or some other radical change. While you hope and trust that something like that won’t happen, reading stories of those who have walked that path certainly gets you thinking…and praying.

I’m not really going anywhere with this. Any family worries about the possibility of the unexpected, of a tragedy. When you have a large family, that fear is a bit more pronounced because the reality is that housing so many people, and simply providing for their needs, can be difficult under good circumstances. Though, I don’t know if any of that really compares to that nagging of the idea of your child, who already is lost in the world of his/her disability, having to deal with such situation. I am just thankful that we’re not facing that situation…yet.

There but for the grace of God go I.

I went to grammar school with Jenny McCarthy. Well, actually, I was a couple grades ahead of her, but I saw her and knew of her and her family. Anyhow, I say this not to brag, because honestly…who cares? We weren’t friends. Though I’ll admit there was quite a buzz in my community of friends when she appeared in Playboy. Everyone wanted to brag about knowing her then. Though, I was on the other end where I disapproved of the whole Catholic-schoolgirl nudity thing and just ignored it.

So, why am I mentioning this? Because despite my 1 degree of separation to the star, I certainly never thought we would have any connection whatsoever. I mean, her in Hollywood, me in my little Chicago-suburb home with my big family. There were times I would see her on t.v. and think of the fact that we had similar roots starting off, and how we lived in two totally different worlds. I often thought if I met her again, there would be absolutely nothing we had in common, nothing we could talk about (save some slight reminiscing about our old neighborhood). Then, of course, Jenny came to the forefront of the autism scene.

I have to admit, it has been a sad and exhilirating ride watching this woman grab the bull by the horns and bring autism into the public spotlight. I know that she is but one of many, and there are numerous people who have championed this cause. But the bottom line is that through her notoriety and fame, Jenny has brought the cause to a lot of people who would have ignored it otherwise. Whether you agree with her or not, you have to admire her.

I have to admit, seeing her picture with Evan on People recently, I was happy for her. Happy she had found her cure. I say “her cure” because I know that gluten and cassien-free is a miracle for some kids, but not all. For us, it didn’t work, and it was a hard reality to face when you hear such success stories and have such hope. But there are so many paths to autism, and many more paths to a treatment and (possible) cures. Living with a husband who has Asperger’s, I feel my kids are genetically predisposed, so our journey is a little different, and our path to a treatment not the same. Still, that doesn’t mean I can’t feel the joy for those who do find the answer they need.

I guess I am just writing an open letter to say, “good for you, Jenny.” While we walk in far different circles, I can say I’m glad to have known you, and I’m really happy for you that you found the key to getting your son back.

Having a non-verbal child is a challenge under most circumstances. I happen to also be “blessed” with a child who refuses to use PECs or sign-language, because he *knows* that the way to communicate is to speak–and wants to do that, even though he can’t speak much due to his disability. As you can imagine, that makes fulfilling his needs even harder. Not to mention making it harder to educate him. For years we struggled with the schools, as they insisted it was our fault he wouldn’t use PECs, even though we tried and would have welcomed an easier way to communicate.

We are very fortunate that over the past few years, Raif has managed to pick up enough words to communicate some of his wants. We have also gotten very good at tailoring “yes or no” questions so he can give us an idea of his desire when he can’t outright tell us. Multiple choice questions also encourage him to “use words” to clarify his preferences. One of the funniest things is his use of canned-phrases to let us know signify his wants. I can’t help but laugh when I ask him if he wants soup, and he’ll answer with “Mmm, mmm, good.” Reminds me a lot of the character from Batteries Not Included. Remember that movie?

Despite advances on the communication front, one thing that has not changed much over the years is Raif’s inability to tell us if he is sick. It’s easy if he is running a fever, or has such severe pain that it’s obvious he’s ill. However, a lot of the time when Raif is sick, we don’t realize it, and more importantly, he doesn’t realize it. I think we have all been there, where we feel off and just can’t really point to what is ailing us. Perhaps a tickle in our throat, or a dull ache. Those are the illnesses that perplex my son, and which cause us a lot of trouble.

After a long period of doing very well in school, Raif became violent the other day. No one could really understand why. After a look-over by the nurse, they noticed his throat was a little red. Pain can make Raif feel off and get aggressive. He wasn’t running a fever or anything, but we decided to take him to the doctor. Turns out he had an infection and was put on antibiotics.

Even with a severe child, I think we still take it for granted that if your child is sick, he/she will let you know. Even for Raif, if he is in a lot of pain, will come and take our hand, placing it on his ear or other place it hurts. General illnesses, and even things that are overtly painful like a sore throat, are abstract and perplexing to our son. There are times we’ve suspected he’s suffered weeks without us knowing, until the illness (or his aggression) go so pronounced it was obvious something was wrong.

When we told Raif that he was going to the doctor, he was happy, and then proceeded to coughing hard and moan. He continued this over-exaggeration the whole day and through his visit at the doctors, even though everyone kept reassuring him he didn’t have to act sick for the doctor to see him. It wasn’t until after the fact that I realized in Raif’s head, *that* is what he equates illness with. Even if he feels bad, if he does not see those physical symptoms in himself, he may not realize he is truly sick–despite the fact he feels bad enough that it comes out in the form of marked aggressiveness.

Thankfully, the doctor and nurses were really good about the whole situation. We got Raif into see the doctor quickly, piggybacking on an existing appointment we had for two of our daughters to get a check-ups. Again, in Raif’s mind, he saw his siblings getting shots and immediately felt he needed a shot. In fact he got so worked up about it, he pinched himself in the arm when he didn’t get one. He was consoled when the nurse gave him a band-aid that matched his sisters’.

I hope one day Raif will be able to tell when he is sick, and let us know, even if it is him simply saying “sick.” Until then, it just adds another role of “medical detective” to our resume as we have to look out on our own for the signs when he is not feeling well. Which is not as easy as it sounds, because our son is smart enough to know how to FAKE being sick, even if he isn’t so astute to always know when he is truly ill.

Hello!  I am so pleased to be introducing myself to you here at the Lots of Kids-Special Needs blog!  My name is Missy (MomZookeeper) and I live in central Kansas.  My dh is Brandon, and we have a house full!  We have 7 legally adopted children, all adopted from foster care.  We also have 1 informally adopted older daughter and 2 former foster sons who are still “ours at heart.”  All that brings us to a grand total of 10 so far (5 living at home still)!  AND we are already working on grandchildren!!!  We love our life, we are firm believers that God has created this family and continues to do surprising things here.

While dh and I are only in our early 30s, we have been doing what we do for over ten years now.  Currently, we homeschool 4 of the 5 children who are left at home.  Most likely, we will homeschool all 5 of them within the next year (we are leaving one of them in public school as we complete her adoption process).  Homeschooling 4 children with VERY different levels of ability and attention span can be quite interesting!

We have 3 children who are classified with “mental retardation” based on their IQ and school testing (which I despise) and have spent a significant amount of their time in special education at public schools. We also have 7 of the 8 kids who have significant attention problems, either diagnosed ADHD, ADD, or strong symptoms that would lead to a diagnosis.  We have worked with children who have learning disabilities, dyslexia, attachment issues, attention problems, and even more severe psychological and emotional disturbances.  We are also now dealing with transitioning some of our children with special needs into adulthood.  All of this, at my age, is a bit overwhelming, but I have learned a few things over the years.  I also find that it is so much easier to walk through difficulties and life in general when we have others with similar experiences to share it with.

Most of all, we rely very firmly upon our faith to carry us through.  My writing will probably always be tinged with the importance of my faith while I parent all of these children.  Were it not for my faith in a God who created all of these children and has brought them all into this family, I could NOT get up each day and do what I do.

So, I’m excited about sharing with everyone the “ups and downs” and “ins and outs” of life with all of these children!  I’m a bit eclectic in my approach to writing, writing whatever “the Spirit” leads!  🙂  I do enjoy hearing from readers, so please leave comments!

I will leave you with a list of my beautiful family members, and close for now!

  • Brandon (35) my dear husband
  • Missy (33) ME
  • Crystal (22) our informally adopted daughter, engaged to Shane, mommy to Cayson (3mths) and #2 on the way in May 2009
  • SueAnn (20) legally adopted in 2007 at 18, engaged to Gary, soon-to-be stepmommy to Tiana (2yrs) and Danny (1yr), and expecting baby #1 in May 2009 also!
  • Dean (18) adopted in 2001 at 10, currently in a juvenile correctional facility for trouble, LONG story of about 5 years of ups and downs with him, ADD, ODD, PTSD, CD, RAD, Bipolar, you name it?
  • Thomas (17) adopted with sister, SueAnn, in 2007 at 15, homeschooled, developmental disabilities, learning delays, ADHD, nervous tics (mostly resolved), and a very HAPPY, friendly, loving kid!
  • Corly (16) adopted with brother, Dean, in 2001 at 8, homeschooled, ADD, learning delays, and some emotional/psychological issues, a very hard-working, responsible young lady, learning to DRIVE and hold down a job and keep life all-together (not an easy task with severe ADD!).
  • Kevan (13) adopted in 1998 at 3yrs old, homeschooled, severe ADHD, developmental disabilities, learning delays, biological sibling with Thomas and SueAnn, attachment issues even after 10 years, but overall, a sweet boy, loving and sensitive, who just gets into a LOT of mischief!
  • Skylar (7) adopted in 2002 at 9mths old, homeschooled, attention problems (not diagnosed), a very smart and loving child whom we have had the joy of calling our baby for almost 7 years now!
  • Cary (6) recently adopted (will be final in 2009), public school 1st grader, blond-haired, blue-eyed cutie, she’s funny and lovable, yet a little scared and shy and still adjusting to being a member of such a large family!
  • Our two former foster sons, Cameron (3) and Issac (18 mths), now live back at home with their mommy and are doing well!  They both have some developmental delays, mostly fine motor skills, language and some gross motor skills.  They are thriving with the stability of being back home with mommy, though!  We’re blessed to have been a part of their lives.

Have a blessed Friday!

-MomZookeeper (aka Missy)