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!

 

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.

 

Jenny McCarthy

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.