Pica

Wow...it has been a while since I've posted here, but we have sure been busy! Now that school is out for the summer, I don't know if it will help to make posting easier or more difficult. =) I am simply making random posts and a lot of the times, I think of them due to the presence of the subject during my day. PLEASE...if there is any particular area you would like for me to discuss here, don't hesitate to ask. You may have questions that I would never think of because I am so use to dealing with everyday tidbits. Feel free to leave a comment or e-mail me. I will try to be as honest in my posting as possible.

Pica...anyone know what that is? According to Wikipedia, Pica is a medical disorder characterized by an appetite for substances largely non-nutritive (e.g., clay, coal, soil, feces, chalk, paper, soap, mucus, ash, gum etc.) or an abnormal appetite for some things that may be considered foods, such as food ingredients (e.g., flour, raw potato, raw rice, starch, ice cubes, salt, blood). It is not uncommon to see Pica in children with developmental disabilities, but there are typically developing individuals who have Pica as well. I consider Matthew to have Pica, even though he's never been officially diagnosed. Matthew has eaten a WIDE variety of "stuff" that is definitely not appropriate in his time. Some things I could mention would make your toes curl, so I'll not go there. Some of the tamer of items include: grass, sand, dirt, ladybugs...eewww...paint, playdoh, deodorant...get the idea?! (He also tends to chew on his shirt.) Now, people who have 'true' pica, tend to crave their particular item. Matthew doesn't so much go out looking for a wad of grass to chew on, but if the opportunity presents itself, he will take advantage of the situation. On more than one occasion, I have told him he is not a goat and to quit eating the grass =) Pica does have the tendency to be dangerous, obviously, if the person tends to eat something that is toxic, and also if they eat paint or dirt that could be contaminated with lead. Matthew has been tested for lead poisoning before, and it will be something that I will probably have him tested for a little later as well, just because of his tendency to pick up things and eat them. It can also just be a pain trying to keep things put out of reach....playdoh has to be hidden well because that's a Matthew favorite! =)

Self Injurious Behavior

I have learned that it is common for children on the autism spectrum to exhibit some form of self-injurious behaviors. Self-injurious behaviors (SIBs) can include, but are certainly not limited to, head banging, head slapping, head butting, biting oneself, pinching oneself, etc. Sadly, Matthew is among that number. When Matthew was just a baby, not quite a year old, he would rock himself constantly when laying on his back. Now that was not a SIB, but I feel it was the beginnings of some following behaviors. When Matthew was in a toddler bed, he would wake up just enough at night to set himself up and hit his head into the wall, but it was if he was rocking, which was what I felt, a soothing action. He got to where he hit his head hard enough into the wall, that he actually busted the sheet rock. I then moved his bed to where only the head board was against the wall so he could not hurt himself in the night by hitting his head into the wall.

Matthew's SIB of choice these days is head slapping. It is one of the saddest things to see your child exhibit a behavior that is painful to himself. And just to keep this real and honest, it can actually be annoying at times. I know, that's awful, but I was to be honest as to my feelings of dealing with this continually. He has for years, seemed to need to "slap" his head when he rouses around at night, but "slap" is a little strong for that action. It was actually just a light "slap" that didn't really concern me too much because it did not seem hard enough to really hurt. I also found out that if I stopped him from "slapping" it would frustrate him and the hitting would just get harder as he became more agitated. However, the slapping has gotten increasingly more severe the last couple of years, and I know it hurts him. Most of the behavior is due to frustration when he doesn't get what he wants. (Like another piece of bologna or a visit to Grandma or Mamaw's houses.) He hits hard enough that it leaves big red places on the side of his face. We do try to prevent him from slapping himself, but sometimes it's just not possible. This has actually been one of my major concerns that I have voiced to professionals, and I honestly don't think they have a solution. When he was seen at the Weisskopf Center, the hitting was just increasing in intensity and I asked them about this. The psychologist's reply was that if it hurt, he would stop. She said she had never seen a kid really "hurt" themselves before. Well, I am no psychologist and I don't have a college degree, but I've got enough smarts about me to see plainly that my child hits himself hard enough to hurt.

There are different reasons for these different behaviors. Matthew originally started off with the rocking and then the light tapping of sorts for soothing and comfort, while I feel most of his behavior now is due to frustration. There are children that crave a certain sensation and have SIBs for that reason. It is completely unknown to me why someone would choose to ram their head into a concrete wall, but it has been known to happen. Matthew has hit his head into a hard wall before when agitated and it could easily be harmful to him. Thankfully, that is not something that he "craves" or does on a routine basis...it just happens on occasion.

It is my hope and prayer that Matthew's SIB does not get even more severe as he grows and gets stronger. It's just one of those "hard" things to deal with while parenting a child on the spectrum.

Autism Mother

I am proud to be an autism mother! On this Mother's Day, I couldn't be more proud to be mom to my two sweet boys. I love both my boys equally, but each in their own way. When most moms take for granted their child's first words, first steps, first bike ride, first t-ball game, and more, I am truly excited for all that Matthew does accomplish, and it has allowed me to be more thankful for Jacob reaching each milestone as well. I never want to place limitations on Matthew, but it is likely there will be things he may not do in life. That makes me want to celebrate what most would consider the small things, even more.

I am thankful that God chose ME as Matthew AND Jacob's mommy!! Matthew has been such a blessing in my life and has helped me to realize so much! Oh there are times that I would wish him to be "normal", for his sake mostly. But, then I realize, Matthew is "normal". I would not change him for all the world because this is the way God chose for him, and who am I to change God's plan. I will continue to help Matthew with all that I am, and I will enjoy each progression he makes. Jacob has also been such a blessing. To watch him grow and develop has been extraordinary, and I am as thankful for him as I am Matthew. My boys are my sun shines! =)

On this Mother's Day, I am thankful to be an autism mother!

Parental Denial?

I have had the first question asked in my comments section, and I want to do my best to answer it from a view of someone who's "been there". The question is referring to parents seeing/knowing/recognizing when their children are exhibiting characteristics that are becoming of autism, and if it is fear of "the label" or some other reason that they are inactive, a lot of times, in getting help.

In my case, I will honestly claim ignorance, first and foremost, as to my thoughts of whether Matthew had autism. (As noted in my previous post.) I KNEW there was SOMETHING going on, but I didn't know what. My pediatrician and I kept an eye on Matthew's progress as an infant, and when we knew that intervention was needed, I sought it out. Of course there was a little part of me that wanted to believe that he would "out grow it" or "he was just developing at a slower pace", but it became as plain as the nose on my face that this was more of an issue than being a few months delayed. Of course, having a diagnosis for him made it all too concrete in the beginning, so I wasn't that anxious for it. Matthew was diagnosed initially with developmental delay, and that seemed a bit better to me then than having a pin-pointed diagnosis. It made it more hopeful that it was something that could be completely resolved. By the time it was first mentioned to us that Matthew was believed to have autism, at age 4, it was almost a relief to have a diagnosis that wasn't so broad. Oh gosh, don't get me wrong, those were words that I didn't want to hear, and didn't even believe at the time, but now it is easier knowing. I had a couple of friends who worked with children with autism, and they had seen the signs and thought autism from early on, but they didn't tell me so until later. It's just simply easier to spot when you are educated in disorder, but also when you're not too close (as in parent or such) to the child in question.

I am not here to place judgement on any parent. BUT, I do find myself wondering if parents of children that I have seen, have ever questioned their child's behaviors. Can they not see the warning signs that seem almost obvious to me. Do they even take their child to the pediatrician, because surely they would keep tabs on milestones and behaviors. These are questions I don't know the answers to. Perhaps they are like the person I was when Matthew was first diagnosed...unknowing. Parents sometimes see what they want to see in their children which is nothing more than typical development. I think that makes it hard for them to see the broader picture sometimes. Of course, it was easier for me than some, to see the delays that Matthew had because he does fall on the low functioning end of the spectrum. You take a child on the higher functioning end of the spectrum and it is harder to see the signs. They may talk as well as the next person, and I am here to say that children with autism are SMART!! I think because a child may excel in certain areas, parents are left to believe that there can't possibly be something more to their "odd little behaviors". For whatever the reasons, parents have to come to realize it for themselves. Until I did some reading/researching on my own, I couldn't believe that Matthew had autism. I guess my answer to the question could be summed up in two parts:

1. Parents lack knowledge and understanding of autism to see the signs for themselves.
2. They don't want anything to be "wrong" with their child, so they ignore the signs for as long as possible.

It may not make sense to you, but until a parent wants to see it, or is forced to see it from learning the signs and characteristics, they try to put it off for as long as possible. The sooner they can see and accept it though, the sooner their child can begin getting the services that he/she is entitled to!

Gosh, I hope that made sense :)

WELL...

I don't quite know what to say! I just checked the new e-mail address that I created and posted on this blog, and I had the sweetest e-mail from a cousin/friend of mine. I had no idea that she had even been reading along, but she said she had found my blog one day and had been following my family's stories. Her uplifting words meant so much, and it made me feel good about sharing our story....not because I wanted the generous words from someone, but because I can tell from her e-mail that she has gained an understanding of some of what my family goes through. Perhaps, just perhaps, this blog will make a small difference!!

I know this little post is not particularly about autism, but I was so overjoyed about such positive feedback, that I had to share my feelings! I have received many wonderful comments on my 'family' blog, as well as e-mails and face-to-face admissions to having read along, but I guess I feel like this blog has definitely gotten off to the start I had hoped for. I can say that for someone to tell you that you have been an inspiration to them, means more than they could know. She may not realize how that will help me hold my head up, as it's not always the easiest thing to do! It's very easy to get down and out when faced with challenges, but thanks to wonderful family and friends, and most of all a truly wonderful God, it is made easier! Thank you all!!

Why It Wasn't Autism

This is my debut post for my new blog dedicated to our autism journey. I have included the posts that I had written for my other blog as well, just so everything would run a little smoother.

I had mentioned in the last post that I didn't really think Matthew had autism. I hope to explain why here. First of all, I have a nephew who had been diagnosed with autism, and quite frankly, Matthew was nothing like him. They couldn't have been more opposite and I just couldn't see the relevance. It was actually an innocent fault of my called "ignorance". Truthfully, I was ignorant in the subject of autism and did not understand that it was a spectrum that children could fall all along the realm of. Simply stated, children CAN be total opposites and still both be diagnosed with autism. Some of you may be interested in what differences the boys have, so I'll give you some ideas. Some of these things were noticed when they were much smaller and others now, but I think it will give you an idea as to how they fall along the spectrum. Matthew does not mind at all to be MESSY; my nephew, um, not gonna happen. Matthew is a cuddler and love bug; my nephew, not so much. Matthew struggles severely with communication and verbalizations; my nephew can talk your leg off if he chooses and is completely hilarious! Matthew lacked a lot of gross motor skills and my nephew did not have those problems. Matthew was severely lacking in cognitive skills and my nephew has done quite well in several subjects in school. These are just a few of the things that I noticed about the boys that made me think what one of them was diagnosed with, could not possibly hold true for the other. Upon reading and researching, I found out that it is quite possible for this to be true. My nephew is on the high functioning end of the spectrum which means that he in much more capable of functioning in society as we know it. He still has areas that he has difficulty with, but I am amazed at his abilities! If you can't tell, I LOVE my nephew SO much!! He is such a source of joy and fun!! Matthew falls on the low functioning end of the spectrum and faces many more difficulties. SO...I knew there was something wrong with Matthew for him to not be hitting his milestones...I wasn't a complete moron! But, I just hadn't even given the thought to autism at that time because I simply didn't know the facts. Since that time, autism has been brought to the forefront as a widespread disorder and has received much more media coverage. Since learning more about autism and being around more children on the spectrum, I find myself privately wondering if different children I encounter in public fall along the spectrum. There are some that seem so apparent to me, but their parents seem oblivious to their characteristic behaviors. Who knows for sure though; maybe they are simply in denial or are battling the thoughts privately as well. It's definitely not for me to say.

I am really excited about this new blog. I hope to use it as an outlet for myself, but I hope that it helps anyone reading it to understand a little more in depth the impact that autism has on a family. There are lots of topics surrounding autism that I hope to touch upon, but I would LOVE feedback from any of you!! If there is something that you would like to know more about, feel free to ask!! If it's something about my family, I will answer as honestly as I can. If it is more of a factual question about autism in general, I will try to research and find the answer if it is something that I don't know. I have also decided to include an e-mail address so that if any of you have questions that you would like to ask, but don't feel comfortable leaving it in my comment section, you may e-mail me privately. I would love to know who's reading along, and if you are finding this blog to be beneficial! Thanks for stopping by!!