A Tough Time

When I heard that there was a new outbreak of the Swine Flu, I have to admit my response was more of weariness than concern. Now, I’m not downplaying the seriousness of the situation at all. It’s a dangerous flu and people have died–that’s not good at all. However, over the last couple of months my family has been wracked with one illness after another. Stomach bugs, flu bugs, and severe chest colds. There was one brutal week where literally everyone was so sick there was no one available to play nurse to the others. This culminated in me and 2 of my daughters getting pneumonia a few weeks ago. So, when the Swine Flu news hit, it was more of an “oh no, not more sickies” from me than anything else.

I am sharing this because I know this blog has been a bit slow over the last couple of months. It’s been a hard time for my family, as well as some of our other bloggers. Juggling a large crew is difficult enough. Throw in illness and general economic woes and things get even more harried. So, please forgive the quietness around here. It wasn’t intentional, and we don’t mean it to be permanent. I’m hopeful that this current flu will not turn into the horror story that it could and that soon everyone will be enjoying warm summer weather and be healthy…and blogging again.

I want to thank everyone who has been following this blog for your patience and continued support. We are working on getting things together and having more regular posts. We also hope to do a few interactive things with our readers–so stay tuned for that. In the meantime, remember to wash your hands and keep safe until this latest threat has passed.

***This message is cross-posted on the various LOK Blogs.***

 

Win 2 of Jenny McCarthy’s autism books.

Wow, there is a snowman on this page! And Valentine’s hearts on the last post! Man, guess it’s been a while since we’ve had a post. Sorry about that, folks. Tons of stuff going on at the Lehmann house and the Lotsofkids front. I am working on a couple of posts that I hope to have up soon, and will update you on the various happenings.

In the meantime, I’m breaking my unexpected silence to post this find. There’s not much time in the day, but if you’re interested, enter to win:

http://teachingtommy.blogspot.com/2009/04/enter-to-win-jenny-mccarthys-autism.html#li

 

Lots of loves and hugs today!

 

Photoshoot

As a webmaster of a site for large families, when there is some type of news about a big brood, I often get called for an interview. This time, the news is the octuplets. Well, more importantly, the fact that the woman had 8 babies and *gasp* had six others at home.

Anyhow, the paper wanted to do a photoshoot of our family for inclusion in the article. Now, I should tell you, I get very hesitant to do these things. Not because I am camera shy (though I have to admit to being self-conscious about my weight in pictures), but rather because I worry about Raif. He does not do well with strangers. He does even worse with strangers in his house. In fact, that is the main reason I have never pursued any reality shows. I have actually had producers approach me and ask if I would be interested in doing them and I always decline. I could not do that to Raif, not to mention my other kids who are on the spectrum. Granted, they do fine for short periods, but being followed around for weeks would just destroy them.

Anyhow, I did make it clear to the paper that if a photographer came, it would have to be a limited shoot. In the living room area only. Any other parts of the house, particularly the upstairs bedrooms which are Raif’s domain, could not be used. Thankfully they were accomodating, even though the photographer get a bit daring near the end and asked if she could get a “bunkbed shot”.

The thing that amazed me is that Raif did fantastic. First of all, he was really good about keeping his clothes on. Yeah, I know that sounds odd, but if you have an autistic kid you’ll understand.* Second, he was very open and receptive to the woman, whom he had never met. That’s huge. Now, Raif is a total ham. He loves to get his picture taken and will hog the camera mercilessly. However, he was very cooperative with the woman, following directions, and being polite. When the majority of the pictures were taken and the woman was taking candid shots, Raif instinctively knew it was okay to get a little nutty. He started doing goofy poses and pushing his way into other shots. It was interesting to see him assess the situation and know when it was appropriate to relax.

I have to admit, I don’t know if the photographer really believed me when I said that Raif would only do well for so long and that he would freak if she went into another part of the house. I mean, he was being so polite. But, true to form, after about 45 minutes of her being there, Raif walked up to the photographer, shook her hand, said “bye” and gestured for the door. The autistic equivalent of “okay, now get out.”

Either way, I was proud of my boy. This year Raif has made such major advancements. It just floors me. I am still realistic that he will probably never be even remotely what would be considered normal, and probably never live on his own. But to see him becoming so much more personable, and understanding social concepts warms my heart.

To read more about the feature and the shoot, and for a link to the NYT article, check out my post on the Mega-Moms blog HERE.

* I wanted to note that at the end of the session, it was Paige that ended up trying to strip. And she’s normally really good with strangers. So, my apprehensions about these things are justified.

 

“And”

A few days ago, we were making dinner. What we were having on the menu was not something that Raif will eat. Now, I know there are some parents of SN kids who insist their kids eat what they eat. Problem is, Raif won’t. His texture issues and aversions will simply have him gagging and throwing-up.

Normally I try to cook meals with at least one dish he will eat. Meaning, I will cook chicken and mashed potatoes, knowing he’ll eat the mashed pots. However, for the days he doesn’t like anything, I have a short list of alternates that I can easily make that he likes, such as hot dogs. On this day I asked him if he’d like soup and crackers. Raif went to the pantry, pulled out a can of tomato soup and said, “Soup. Tomato Soup.”

Then came the amazing part. “Soup…and… Soup…and…cheese.” At this point he stopped and thought really hard, working to articulate. “Soup and…cheese sandwich.”

This was a breakthrough! Raif meant grilled cheese but it didn’t matter. My son had articulated a want, but more importantly had used the word “AND”. For anyone familiar with the whole development thing, there is a huge thing getting to a point where you can express 2 distinct thoughts. “This and that” or “This then that” are huge milestones. Before that day, Raif would speak his wants, but usually one at a time. If there was more than one thought, it was usually disconnected with some space of time. Granted, this might not have been how it was panning out in his head, but it was how his limited speech worked.

One of the things having a special needs child has taught me is to never take anything for granted. Those things, albeit small, are so important.

In a time where there are so many ups and downs, in life and also in Raif’s life and development, those glimmers truly keep me going.

 

2009 is Here!

The past year has been quite a roller-coaster at our house. Like many people, we have struggled through a poor economy, unemployment, and the changing needs of our family which are always made a bit more challenging as we deal with our severely autistic son, and our daughter who is showing more prominently that she has pronounce Aspergers. However, despite all the ups and downs, we go into the new year happy and hopeful. We are also committed to posting more here and sharing more of our life with a large family and special needs kids. We hope you will continue to join us here on our journey, as well as getting to know better our newer bloggers.

From our family to yours, we hope that you have a wonderful and prosperous 2009!

 

Solitary Confinement

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.

 

Happy Un-Birthday?

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.

 

Counting our Blessings Today

From our family to yours…

 

When tragedy strikes.

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.