There are so many ways to explain "Autism." Sam was originally diagnosed with PDD-NOS, and now has a diagnosis of Autism Spectrum Disorder. Here is the most "dummied down" version of an explaination I have found as of now. (Courtsey of WebMD) Hope this helps you to understand. I know it sure helped clear up this differences for me.
Autism Spectrum Disorders
The forms of autism are thought to overlap considerably. But the fact that there is wide variation in symptoms among children with autism led to the concept of autism spectrum disorder. Autism seems to be on the rise, and autism spectrum disorders affect between two and six children out of every 1,000 in the U.S. It's unclear, though, whether the growing incidence of autism represents a real increase or just improved detection. Early diagnosis of an autism spectrum disorder is important. That's because detection leads to treatment, and with early treatment, a child with autism can gain improved language and social skills.
Signs of Autism Spectrum Disorder
Autism spectrum disorders affect three different areas of a child's life:
social interaction
communication (nonverbal and/or verbal)
repetitive behaviors or interests
Each child with an autism spectrum disorder will have his or her own individual pattern of autism. Sometimes, a child's development is delayed from birth. Other children with autism develop normally before suddenly losing social or language skills. In some children, a loss of language is the impairment. In others, unusual behaviors (like spending hours lining up toys) predominate.
Parents are usually the first to notice something is wrong. However, the diagnosis of autism is often delayed. The parents or a physician often downplay early signs of autism. They may optimistically suggest "it's just a phase" or a trivial delay in development. Children with a suspected autism spectrum disorder should be evaluated by a professional team with experience in diagnosing autism.
There are three main forms of autism spectrum disorder, and two rare, severe autistic-like conditions:
Asperger's syndrome
pervasive developmental disorder, not otherwise specified ( PDD-NOS)
autistic disorder (Here's our Lily bug!)
Rett syndrome
childhood disintegrative disorder
Asperger's Syndrome
The mildest form of autism, Asperger's syndrome affects boys three times more often than girls. Children with Asperger's syndrome become obsessively interested in a single object or topic. They often learn all about their preferred subject, and discuss it nonstop. Their social skills are markedly impaired, though. They are often awkward and uncoordinated physically.
Because Asperger's syndrome is mild compared to other autism spectrum disorders, some doctors call it "high-functioning autism." As children with Asperger syndrome enter young adulthood, though, they are at high risk for anxiety and depression.
Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS)
This mouthful of a diagnosis applies to most children with autistic spectrum disorder. Children whose autism is more severe than Asperger's syndrome but not as severe as autistic disorder are diagnosed with PDD-NOS. Autism symptoms in kids with PDD-NOS vary widely, making it hard to generalize. Overall, compared to children with other autistic spectrum disorders, children with PDD-NOS have: impairment in social interaction -- like all children with autistic spectrum disorder better language skills than kids with autistic disorder, but not as good as those with Asperger's syndrome fewer repetitive behaviors than children with Asperger's syndrome or autistic disorder a later age of onset However, no two children with PDD-NOS are exactly alike in their symptoms. In fact, there are no agreed-upon criteria for diagnosing PDD-NOS. In effect, if a child seems autistic to professional evaluators but doesn't meet all the criteria for autistic disorder, he or she has PDD-NOS.
Autistic Disorder
Children who meet more rigid criteria for diagnosis of autism have autistic disorder. They have more severe impairments involving social and language functioning, as well as repetitive behaviors. Often, they have mental retardation and seizures as well.
There are two rare, severe forms of autistic spectrum disorder that are considered separately from the others: Rett syndrome and childhood disintegrative disorder.
Rett Syndrome
Almost exclusively affecting girls, Rett syndrome is rare. About one in 10,000 to 15,000 girls develop this severe form of autism. Between 6 and 18 months of age, a little girl stops responding socially, wrings her hands habitually, and loses language skills. Coordination problems appear and can become severe. Rett syndrome is usually caused by a genetic mutation. The mutation usually occurs randomly, rather than being inherited. Treatment focuses on physical therapy and speech therapy to improve function.
Childhood Disintegrative Disorder
The most severe autistic spectrum disorder, childhood disintegrative disorder (CDD), is also the least common. After a period of normal development, usually between age 2 and 4, a child with CDD rapidly loses multiple areas of function. Social and language skills are lost, as well as intellectual abilities. Often, the child develops a seizure disorder. Children with childhood disintegrative disorder are severely impaired and don't recover their lost function.
Fewer than two children per 100,000 with an autistic spectrum disorder meet criteria for childhood disintegrative disorder. Boys are affected by CDD more often than girls.
Thursday, February 26, 2009
Verbalizing Verbs & Constructive Constriction
Samantha is going through the motions everyday with her early intervention and the constant influence of myself and her daddy working speech therapy techniques into our everyday conversations with her. We have seen wonderful sparks of speech here and there, and they seem to come at the most random times. She will ask for something in more detail than a single word, she is learning to talk on the phone and has had several good (although very short) conversations with my mom and myself while on the phone. Her labeling is still gaining momentum, but her use of verbs has increased as well.
She is more opinionated about her desires (usually at meal time) and is still struggling very hard to communicate them. We fight the battles of tantrums that start with the frustration she has over something she cannot verbalize every day still. However, we are learning ways to help her through these tantrums quicker and to recover from them smoother. One thing that has been used by 4 different people in 3 different settings is a constrictive hold. It was 1st approached during an E.I. session then brought to my attention again after the special ed. teacher at Sunday school successfully used it on Sam. Matt and I them implemented it at home and if done at the right time in the right way, it is very effective. While not an instant fix for a fit, it is a way of getting that communication connection with her that we need to calm her down.
I am still reading material as it comes to me, however have about 4 books on the desk waiting their turn to educate me further. I have taken a less panic mode approach to all of this and am just tackling one thing at a time. The big picture is still out there and not clear, but if I can just deal with one thing then move onto the next....I seem able to breathe at the same time.
She is more opinionated about her desires (usually at meal time) and is still struggling very hard to communicate them. We fight the battles of tantrums that start with the frustration she has over something she cannot verbalize every day still. However, we are learning ways to help her through these tantrums quicker and to recover from them smoother. One thing that has been used by 4 different people in 3 different settings is a constrictive hold. It was 1st approached during an E.I. session then brought to my attention again after the special ed. teacher at Sunday school successfully used it on Sam. Matt and I them implemented it at home and if done at the right time in the right way, it is very effective. While not an instant fix for a fit, it is a way of getting that communication connection with her that we need to calm her down.
I am still reading material as it comes to me, however have about 4 books on the desk waiting their turn to educate me further. I have taken a less panic mode approach to all of this and am just tackling one thing at a time. The big picture is still out there and not clear, but if I can just deal with one thing then move onto the next....I seem able to breathe at the same time.
Smart, Secure Little Investment!
In these days of a failing economy you never know quite where to put your money for the biggest or best return. Sam got it right. She has collected pennies galore, and a few more valuable coins in her stuffed piggy bank for about a year now. I don't know if any of you have seen it lately, but it was heavy enough she could barely carry it! So yesterday I decided to hit a Coin Star machine with her bank and see just how much her cute little face has paid off. Well she had $21.46 in there! It's her money so I thought it only fair to spend it on her! So while she was at E.I. I went to Wal-Mart and got her stuff for her Easter basket. She got several little candy things and a new Backyardigans movie! Who says you can't get a good return for your investment these days?
Saturday, February 21, 2009
Encouragement and Regained Strength
What a wonderful week this has been! Samantha started her early intervention at the center with Ms. Tara and seemed to do real well. Grandma and Grandpa were here the whole week and got to see both the triumphs and struggles of this journey first hand. They were supportive, compassionate, and very understanding of it all. They witnessed the personal struggle I am having and the lack of strength I have at this point. Samantha took to them with a wonderful acceptance and relished in their presence.
We had a 2nd failed attempt at doing an EEG, but are just going to roll with the punches and move on to the next test on the list. This coming week Sam will be evaluated for in-home ABA therapy. I cannot wait to hear what kind of benefits this program has to offer. Sam's blood work and genetic testing has been put in progress and we should have some results on those here in the next week or two. We are still on the waiting list for a slot in Vanderbilt's speech therapy group. I am hoping in the next month or so we will get a call from them.
Sam woke up this morning with the onset of a cold, but seemed to get better as the day went on. As the evening rolled around though she got stuffed up real bad and I fear a long night is ahead of us.
All in all this week was a great one filled with fun, family, laughter and lots of encouragement. It was just what I think we both needed.
We had a 2nd failed attempt at doing an EEG, but are just going to roll with the punches and move on to the next test on the list. This coming week Sam will be evaluated for in-home ABA therapy. I cannot wait to hear what kind of benefits this program has to offer. Sam's blood work and genetic testing has been put in progress and we should have some results on those here in the next week or two. We are still on the waiting list for a slot in Vanderbilt's speech therapy group. I am hoping in the next month or so we will get a call from them.
Sam woke up this morning with the onset of a cold, but seemed to get better as the day went on. As the evening rolled around though she got stuffed up real bad and I fear a long night is ahead of us.
All in all this week was a great one filled with fun, family, laughter and lots of encouragement. It was just what I think we both needed.
Friday, February 13, 2009
Gearing Up For the Grandparents
This morning we all got up late (Hubby had the day off) and took our time getting around. Sam and I went into the kitchen for our usual routine of an apple cinnamon cereal bar and some milk to start the day. This morning no one was in a rush so I decided to make something more filling for breakfast. I asked Sam what she wanted and she replied with her tried and true response..."Ceeweeall." Translation: Cereal...accompanied with the sign. I told her today we were going to have something different, and asked again what did she want. To my surprise and great joy, she replied, "Bread and eggs!" Now for most parents of any typically developing 2 1/2 year old, this answer would not have seemed so extraordinary. However Samantha has up to this point shown very little free thinking, and almost no independent expressive language. If you give her an option she will repeat it and usually accept, but for her to determine on her own and be able to express a multiple desire is next to phenomenal. I grabbed her and scooped her up promising she could eat all the bread and eggs she wanted. It was a great start to a great day!
We prepared for the arrival of my parents and are very excited to have them here tomorrow evening. They will be here a full week and hopefully will be able to get lots of quality grandma and grandpa time in. Samantha is in for some spoiling! Then again, what are grandparents for?
We prepared for the arrival of my parents and are very excited to have them here tomorrow evening. They will be here a full week and hopefully will be able to get lots of quality grandma and grandpa time in. Samantha is in for some spoiling! Then again, what are grandparents for?
Wednesday, February 11, 2009
Marriage/Divorce Humor
Hubby and I have always joked that on our 10 anniversary, someone somewhere had just lost a bet. We got married very young and, let's face it, divorce statistics are showing the odds are stacked against most couples entering into this holiest of all matrimony.
Here's our math:
Chance of divorce in US: 50% approx.
Chance of divorce in military: 55% approx.
Chance of divorce with an Autistic child: 80% approx.
So as it stands, 10 years into our marriage, we have about a 185% chance of getting divorced! LOL
Here's our math:
Chance of divorce in US: 50% approx.
Chance of divorce in military: 55% approx.
Chance of divorce with an Autistic child: 80% approx.
So as it stands, 10 years into our marriage, we have about a 185% chance of getting divorced! LOL
The Misunderstood Aggression
Sam's in her favorite spot of the day (bath time) so I thought I'd take a minute to write a little. Today we hit a major rough spot and the aftermath left us both mentally and physically exhausted. Samantha has always done really well with "time out." She's complied with the rule of sitting on her little bench for 2-3 minutes and calming down. Lately though time outs have become more of a chore. She doesn't want to stay on the bench and takes it upon herself to get up after time is up rather than waiting for us to get her. Sounds like just a little push in power, right? That's what I thought too. Until today...
I told Sam to go to time out and KABOOM! all bets were off as she went into a rampage that consisted of throwing her bench across the room, screaming, hitting, kicking, screaming, screaming, more hitting, and even more screaming. This carried on for over 30 minutes. I continued to speak calmly to her as tears streamed down my face and stung my eyes. I could tell she had lost all sense of her surroundings or control over her emotions. I had to exert every ounce of energy to keep her from hurting herself, me, or anything around us. I told my husband I had to hold her so tight that I would not be surprised if she had bruises on her little arms tomorrow. (For anyone rushing to call Child Protective Services at this point, hold on, I'll get you the phone and their number.)
After her finally calming enough to catch our breaths, she looked me in the eye and began to cry. See in all of this fit, she didn't shed one single tear. Yet as she "came back" she was so sad and remorseful for what had just happened. She climbed into my lap, after her 3 minutes were up, and just sobbed . Meanwhile dinner had burned and the phone had rang 2 different times. I didn't care.
These explosions are becoming more frequent and more extreme. I am reading everything I can get my hands on looking for ways to handle these situations. At this point I may as well be trying to tame a tiger. I'm no more knowledgeable or equip for that either!
Dear Hubby mentioned how every night when Sam goes to bed how I just collapse with exhaustion and go right to bed too. Needless to say it's caused a cramp in our time together as a couple and no doubt will eventually take it's toll on our relationship. I just feel like I have 5 balls in the air and dropping one will cause it to shatter rather than maybe just bounce a little. He's right, I am exhausted. I'm tired, depressed, and worn the hell out. Bonus news: in the back of my mind I am always thinking about how he's going to deploy again and I'll be going at this on my own!
I'm in the process of trying to get approved for Respite Care. However, the budget for it has been cut this fiscal year and it may not be an option. I'm still going to try though. Tomorrow is another day and I'm sure (not to sound pessimestic) another issue to be had. I just hope to get enough sleep to recharge my battery. Reinforcements are on thier way. My parents will be here in about 48 hours, and they've NEVER been so welcome. Now how am I going to conveience them to stay? LOL
I told Sam to go to time out and KABOOM! all bets were off as she went into a rampage that consisted of throwing her bench across the room, screaming, hitting, kicking, screaming, screaming, more hitting, and even more screaming. This carried on for over 30 minutes. I continued to speak calmly to her as tears streamed down my face and stung my eyes. I could tell she had lost all sense of her surroundings or control over her emotions. I had to exert every ounce of energy to keep her from hurting herself, me, or anything around us. I told my husband I had to hold her so tight that I would not be surprised if she had bruises on her little arms tomorrow. (For anyone rushing to call Child Protective Services at this point, hold on, I'll get you the phone and their number.)
After her finally calming enough to catch our breaths, she looked me in the eye and began to cry. See in all of this fit, she didn't shed one single tear. Yet as she "came back" she was so sad and remorseful for what had just happened. She climbed into my lap, after her 3 minutes were up, and just sobbed . Meanwhile dinner had burned and the phone had rang 2 different times. I didn't care.
These explosions are becoming more frequent and more extreme. I am reading everything I can get my hands on looking for ways to handle these situations. At this point I may as well be trying to tame a tiger. I'm no more knowledgeable or equip for that either!
Dear Hubby mentioned how every night when Sam goes to bed how I just collapse with exhaustion and go right to bed too. Needless to say it's caused a cramp in our time together as a couple and no doubt will eventually take it's toll on our relationship. I just feel like I have 5 balls in the air and dropping one will cause it to shatter rather than maybe just bounce a little. He's right, I am exhausted. I'm tired, depressed, and worn the hell out. Bonus news: in the back of my mind I am always thinking about how he's going to deploy again and I'll be going at this on my own!
I'm in the process of trying to get approved for Respite Care. However, the budget for it has been cut this fiscal year and it may not be an option. I'm still going to try though. Tomorrow is another day and I'm sure (not to sound pessimestic) another issue to be had. I just hope to get enough sleep to recharge my battery. Reinforcements are on thier way. My parents will be here in about 48 hours, and they've NEVER been so welcome. Now how am I going to conveience them to stay? LOL
Tuesday, February 10, 2009
Rainy Day at Home
This morning I met with Sam's E.I. and Service Coordinator. Both are wonderful women that I feel lucky to have on Sam's "team." We talked about her progress and are preparing to write her IEP here in the next few months. I have heard such horror stories about IEPs and the many violations of them. I will admit I am a bit nervous about the process but am currently arming myself with plenty of knowledge and a few folks to help me along the path. I'm sure as time gets closer I will have more focus on this issue in particular.
It rained here all day so Sam was couped up indoors except for a short trip to the office. We did coloring, play doh, one major tantrum that resulted in us cleaning her room real well, and then a good long nap. Tonight we are spending time at home celebrating Daddy's birthday. He called to say he was on his way and Samantha did really well talking on the phone with him. She still won't hold it to her ear, but on speaker she told him "Love you," and "Bye bye, Daddy!" I love how she will carry around a play phone all day yakking into it like an auctioneer, but as soon as there is someone on the other end....silence.
Tomorrow will be an early morning then an afternoon at home preparing for Grandma and Grandpa's visit. We have been talking with Sam a lot about them and Grandma talks to her on the phone at least every other night. I hope she is grasping a concept of them and their impending arrival.
I received 2 new books in the mail today (Thanks to my wonderful aunt's generousity and support) and will be adding them to my list at the bottom of the blog. Check them out.
It rained here all day so Sam was couped up indoors except for a short trip to the office. We did coloring, play doh, one major tantrum that resulted in us cleaning her room real well, and then a good long nap. Tonight we are spending time at home celebrating Daddy's birthday. He called to say he was on his way and Samantha did really well talking on the phone with him. She still won't hold it to her ear, but on speaker she told him "Love you," and "Bye bye, Daddy!" I love how she will carry around a play phone all day yakking into it like an auctioneer, but as soon as there is someone on the other end....silence.
Tomorrow will be an early morning then an afternoon at home preparing for Grandma and Grandpa's visit. We have been talking with Sam a lot about them and Grandma talks to her on the phone at least every other night. I hope she is grasping a concept of them and their impending arrival.
I received 2 new books in the mail today (Thanks to my wonderful aunt's generousity and support) and will be adding them to my list at the bottom of the blog. Check them out.
Sunday, February 8, 2009
Sunday was "Fun"day!
What do the following have in common?
Dan Marino - NFL Quarterback
Jenny McCarthy - Actress
Toni Braxton - Singer
Holly Robinson-Peete - Actress
William Christopher - Actor (Father Mulchay from M*A*S*H)
Doug Flutie - NFL Player
Didi Conn - Actress (Frenchie from Grease)
They are all parents of children with Autism and are fighting to raise awareness about the epidemic that is sweeping our nation. Please take a moment and check out one of the links at the bottom of my blog. Spend just 5-10 minutes learning something new about Autism and the children who have it.
Sam had a really good today. The weather was amazing here and she was finally able to get outside and play. She ran all over the yard smiling the whole time. I was so happy to toss her in the tub and see her muddly little hands and face wash clean. Anytime the tub water is dirty after bath time...it's been a good day! Tomorrow we have to be up and at the lab before 9am for her initial bloodwork. I hate the thought of her getting poked and in pain, but I know it is necessary for us to figure out what is going on.
I am waiting on the arrival of several books from my wonderful aunt who is an amazing resource and support for me. I also have ordered a few myself and tonight got one for Sam about emotions and feelings. I am back on the path, soaking up any information I can. My motivation is back and I am ready to take another step forward. I need to ride this out as long as it lasts, as with Sam's rough days....my motivation seems to fall short and I find myself in a funk too.
Hope everyone has a great week!
Dan Marino - NFL Quarterback
Jenny McCarthy - Actress
Toni Braxton - Singer
Holly Robinson-Peete - Actress
William Christopher - Actor (Father Mulchay from M*A*S*H)
Doug Flutie - NFL Player
Didi Conn - Actress (Frenchie from Grease)
They are all parents of children with Autism and are fighting to raise awareness about the epidemic that is sweeping our nation. Please take a moment and check out one of the links at the bottom of my blog. Spend just 5-10 minutes learning something new about Autism and the children who have it.
Sam had a really good today. The weather was amazing here and she was finally able to get outside and play. She ran all over the yard smiling the whole time. I was so happy to toss her in the tub and see her muddly little hands and face wash clean. Anytime the tub water is dirty after bath time...it's been a good day! Tomorrow we have to be up and at the lab before 9am for her initial bloodwork. I hate the thought of her getting poked and in pain, but I know it is necessary for us to figure out what is going on.
I am waiting on the arrival of several books from my wonderful aunt who is an amazing resource and support for me. I also have ordered a few myself and tonight got one for Sam about emotions and feelings. I am back on the path, soaking up any information I can. My motivation is back and I am ready to take another step forward. I need to ride this out as long as it lasts, as with Sam's rough days....my motivation seems to fall short and I find myself in a funk too.
Hope everyone has a great week!
Saturday, February 7, 2009
The Sacrifices We Make
As women we understand that there are many sacrifices to be made by becoming mothers. Sometimes our careers take a back seat, or our education is placed on hold, or our social circles change and friendships grow apart. It is expected and understandable that life is going to change by adding a child to the mix.
However, when a child with special need comes along, not only do your own dreams and aspirations take the back burner, somtimes they are abandonded all together. No longer can you return to work after maternity leave and drop your child in a reliable daycare facility. Your employeer is less than likely to undersand the 3 times a week you will need to leave early in order to get your kid to speech, or ABA, or any other therapy. Forget going to college right now, as every spare minute you have to read or study is no longer available for Latin, American History, or Political Science. All of that time is now dedicated to researching new things regarding your child's disability and in my case, how to just communitcate with her better.
Even your social circle changes as you have to cut lunch dates with the girls short or you find that friends with typically developing kids move away from your circle and onto the moms with kids in dance, soccer, or simular activities that your child may never be able to be involved in.
You begin to feel isolated. There are the few that stick by your side, sympathetic to your situation even if never fully feeling your struggle. Those people are the ones to value. They are the ones to hold onto and lean on. You have to realize that they love not only you but your child too. Even still, there are the days where you feel you have given up everything you hoped for and dreamed of for this child. You feel duped in the promise of motherhood and all that it had to offer. You asked for the job just not necessarily with this particular benefit package.
However, when a child with special need comes along, not only do your own dreams and aspirations take the back burner, somtimes they are abandonded all together. No longer can you return to work after maternity leave and drop your child in a reliable daycare facility. Your employeer is less than likely to undersand the 3 times a week you will need to leave early in order to get your kid to speech, or ABA, or any other therapy. Forget going to college right now, as every spare minute you have to read or study is no longer available for Latin, American History, or Political Science. All of that time is now dedicated to researching new things regarding your child's disability and in my case, how to just communitcate with her better.
Even your social circle changes as you have to cut lunch dates with the girls short or you find that friends with typically developing kids move away from your circle and onto the moms with kids in dance, soccer, or simular activities that your child may never be able to be involved in.
You begin to feel isolated. There are the few that stick by your side, sympathetic to your situation even if never fully feeling your struggle. Those people are the ones to value. They are the ones to hold onto and lean on. You have to realize that they love not only you but your child too. Even still, there are the days where you feel you have given up everything you hoped for and dreamed of for this child. You feel duped in the promise of motherhood and all that it had to offer. You asked for the job just not necessarily with this particular benefit package.
Friday, February 6, 2009
"Red Flag" Photos
Samantha at 1 year 8 months
Lunch time at 2 years old.
Tower of blocks at 2 1/2 years old
Lining Up in size order at 2 1/2 years old.
Lining up again all facing one direction.
Blocks are always stacked colored side to colored side, ALWAYS!
Good Day, Gone Bad
I am learning how quickly things can go from good to a complete and total nightmare. Since Samantha cannot process her emotions or verbally express, "Mommy, I'm mad!" or "I don't like the taste of this." it usually results in a blood chilling scream and sometimes the ever embarrassing out of control tantrum. It may be set off by her no longer wishing to ride in the cart, being told she cannot have any cheese for snack (because it increases her constipation), or even her going to put her toys away and the normal place for something already has a toy there. Usually these fits can be settled down in a matter of a minute or two, but sometimes they rage on for 15, even 30, minutes.
Samantha was scheduled for her EEG today and they requested she arrive drowsy. Hum....a two year old whose tired...that's going to be a bad combination any way you slice it. Anyway, I made the appointment for 3pm and hoped to keep Sam up past her nap time in order to comply with the request. No such luck. By 1/2 past 1 she was in the midst of a total meltdown. On one hand I will not tolerate her out of control fits, but that the same time I know it was my decision to skip nap that brought her to this point.
There's the fine line. I understand that Sam cannot control certain behaviors, however in order to function in society, she also cannot be allowed to just get away with them either. I don't even believe this is an ASD issue, but a general lesson in life every kid has to learn. I've had all sorts of unsolicited advice on this issue from those who believe, "Unacceptable behavior is just a phase and kids will just outgrow it on their own. (said as their 6 year old climbs over the dinner table in a restaurant to take the fruit out of an alcoholic drink and eat it)" to those who say, "That kid needs her a** beat!" To those people I want to say..."You think I haven't thought of that?!?!"
Regardless of how anyone else thinks these things should be handled, or the appreciation I have for others advice (as ridiculous as it sometimes is), I know that Sam is a unique kid with unique issues and only my way is going to be what's best for her. I'm confident enough as a parent to not let what someone else thinks of my child effect how I think of myself as a parent. I may not be the expert in anything else, but I know I am the expert on Sam and how she is taught.
So back to my original observation. Routines are proving much more important than I had thought. Some things we can waiver on a bit, and other things are just written in stone. Nap time? That one's in stone.
Samantha was scheduled for her EEG today and they requested she arrive drowsy. Hum....a two year old whose tired...that's going to be a bad combination any way you slice it. Anyway, I made the appointment for 3pm and hoped to keep Sam up past her nap time in order to comply with the request. No such luck. By 1/2 past 1 she was in the midst of a total meltdown. On one hand I will not tolerate her out of control fits, but that the same time I know it was my decision to skip nap that brought her to this point.
There's the fine line. I understand that Sam cannot control certain behaviors, however in order to function in society, she also cannot be allowed to just get away with them either. I don't even believe this is an ASD issue, but a general lesson in life every kid has to learn. I've had all sorts of unsolicited advice on this issue from those who believe, "Unacceptable behavior is just a phase and kids will just outgrow it on their own. (said as their 6 year old climbs over the dinner table in a restaurant to take the fruit out of an alcoholic drink and eat it)" to those who say, "That kid needs her a** beat!" To those people I want to say..."You think I haven't thought of that?!?!"
Regardless of how anyone else thinks these things should be handled, or the appreciation I have for others advice (as ridiculous as it sometimes is), I know that Sam is a unique kid with unique issues and only my way is going to be what's best for her. I'm confident enough as a parent to not let what someone else thinks of my child effect how I think of myself as a parent. I may not be the expert in anything else, but I know I am the expert on Sam and how she is taught.
So back to my original observation. Routines are proving much more important than I had thought. Some things we can waiver on a bit, and other things are just written in stone. Nap time? That one's in stone.
Thursday, February 5, 2009
Why me? We all ask it.
I think the question of "why me?" is one that we all ask in our lives over and over again. It's human nature to wonder if our circumstances are effects of previous actions or if there is a greater power causing things to come about in our lives for His own amusement. If we are able to answer "why me?" then we will be able to see the clear purpose of our life.
Not to be excluded from the inquiring minds who want to know, I ask this question myself. Even my best guess would probably be a far fetch from the real reason but I'll give it a shot. Some have told me that having a child of special need is a complement from God. That maybe He knows I am more compassionate, patient, pro-active, and understanding than other moms might be, and he knew that Sam would be better taken care of with me. While I appreciate the flattery, I am not really buying into this version. I don't know much but I do know that patience, understanding, and compassion are NOT (nor have ever been) my strong points. I almost feel just the opposite might be the reason. Maybe God saw that I needed a good lesson in those things and what better way to give me a dose of them than by giving me a child of special need? Of course, I have always been a fan of the sink or swim method and theory in general.
There are some who believe that Samantha chose me, rather than the notion that I created her. If this is true, I can only imagine the let down her little spirit feels getting the mom that can't yet process all that is in front of her and is constantly stumbling over herself trying to make things happen for Sam. It's like Ed McMahon showing up with the check at your door only to find out he's got the wrong address. Damn!
I really can't say "why me?" because the bottom line is it doesn't matter why. It still is me and I still have to just accept it and move forward. I do ask though, "Why Sam?" That one I do know the answer to....because she is destined for wondrous things and carries a light inside her that burns brighter than any understanding I will ever have. The spirit of those who love her that have passed is inside her and it shows in everything she does. I believe this world needs that little girl way more than she needs us. I can only imagine the lessons she will teach us all.
Not to be excluded from the inquiring minds who want to know, I ask this question myself. Even my best guess would probably be a far fetch from the real reason but I'll give it a shot. Some have told me that having a child of special need is a complement from God. That maybe He knows I am more compassionate, patient, pro-active, and understanding than other moms might be, and he knew that Sam would be better taken care of with me. While I appreciate the flattery, I am not really buying into this version. I don't know much but I do know that patience, understanding, and compassion are NOT (nor have ever been) my strong points. I almost feel just the opposite might be the reason. Maybe God saw that I needed a good lesson in those things and what better way to give me a dose of them than by giving me a child of special need? Of course, I have always been a fan of the sink or swim method and theory in general.
There are some who believe that Samantha chose me, rather than the notion that I created her. If this is true, I can only imagine the let down her little spirit feels getting the mom that can't yet process all that is in front of her and is constantly stumbling over herself trying to make things happen for Sam. It's like Ed McMahon showing up with the check at your door only to find out he's got the wrong address. Damn!
I really can't say "why me?" because the bottom line is it doesn't matter why. It still is me and I still have to just accept it and move forward. I do ask though, "Why Sam?" That one I do know the answer to....because she is destined for wondrous things and carries a light inside her that burns brighter than any understanding I will ever have. The spirit of those who love her that have passed is inside her and it shows in everything she does. I believe this world needs that little girl way more than she needs us. I can only imagine the lessons she will teach us all.
Wednesday, February 4, 2009
Diagnosis Day
Samantha had a follow up appt with her Developmental Ped Dr. on Monday and he has now seen enough evaluations and time pass for a more definite diagnosis. Samantha has moved from a PDD-NOS diagnosis to an ASD diagnosis. He had hoped that between her last evaluation from him and this one that she would move into the "normal" range for speech, language, social interaction, and emotional processing. She sadly has not.
Our 1st line of work will be to have a full set of tests run on Samantha to determine areas of focus. She is having a EEG on Friday to make sure her eye twitch (That she's had since birth) and constantly interrupted sleep is not a form of seizure that is not outwardly noticeable. She will also see a pediatric GI Dr for her chronic constipation issue (which goes hand in hand with Autism) and she will have blood work done to make she she does not have any vitamin or mineral deficiencies as well as a notation of her iron, mercury, and lead levels. Genetic testing will rule out Rhett's Syndrome and other chromosomal issues.
It seems like a lot to put her through but most if it is just done with a blood work-up. If her EEG comes back with something more to look at then we will consider an MRI. He wanted to hold off on that test as it requires her to be sedated and he didn't want to put her anything unnecessary.
I showed him the "red flag" pictures and not only was he amazed by them but he asked to use them in a paper he is publishing through Vanderbilt Medical Center on ASD. I asked if her "pattern obsessions" could just be signs of a high IQ as some have suggested. He said yes, in a child that does not also have the social, speech and language delays Sam has. In her case they are tell tale signs and should not be ignored or dismissed.
In the same time frame as all of this decision making, we have lost another daycare provider and after 6 interviews we are still unable to find anyone reliable or willing to take on Samantha at this time. So after a lot of prayer and soul searching, I gave notice at my job today and will be going back to the roll of full time mommy. I am heart broken that I am no longer in a position to bring an income into our home, but also know that with referrals to many different specialists, and the added services Sam will be getting now...I am needed here for her. She begins Early Intervention Therapy next Monday and Wednesday from 9am-11:30am still with Ms Tara who is amazing! We will have speech resume as soon as possible and that will require 1-2x/week trips to Vanderbilt. Sam will also see an occupational therapist on occasion temporarily until no longer needed.
I am again, as usual, overwhelmed and mentally drained from all of this new information. I really admire Samantha for being able to just get up each morning and take on whatever the day brings with no worries about tomorrow, next week, or next year. This week has been one of the hardest for me and I struggle very hard to be accepting and understanding of all of this.
I ask for continued support and prayers. You all have been so amazing and we are so blessed. I will send you information and articles I find from time to time. If you don't wish to read them that's OK, just hit delete. I just know some of you have said you wished you knew more or could do more, and this is a good place to start.
Hope you are all well and we love you lots!
Our 1st line of work will be to have a full set of tests run on Samantha to determine areas of focus. She is having a EEG on Friday to make sure her eye twitch (That she's had since birth) and constantly interrupted sleep is not a form of seizure that is not outwardly noticeable. She will also see a pediatric GI Dr for her chronic constipation issue (which goes hand in hand with Autism) and she will have blood work done to make she she does not have any vitamin or mineral deficiencies as well as a notation of her iron, mercury, and lead levels. Genetic testing will rule out Rhett's Syndrome and other chromosomal issues.
It seems like a lot to put her through but most if it is just done with a blood work-up. If her EEG comes back with something more to look at then we will consider an MRI. He wanted to hold off on that test as it requires her to be sedated and he didn't want to put her anything unnecessary.
I showed him the "red flag" pictures and not only was he amazed by them but he asked to use them in a paper he is publishing through Vanderbilt Medical Center on ASD. I asked if her "pattern obsessions" could just be signs of a high IQ as some have suggested. He said yes, in a child that does not also have the social, speech and language delays Sam has. In her case they are tell tale signs and should not be ignored or dismissed.
In the same time frame as all of this decision making, we have lost another daycare provider and after 6 interviews we are still unable to find anyone reliable or willing to take on Samantha at this time. So after a lot of prayer and soul searching, I gave notice at my job today and will be going back to the roll of full time mommy. I am heart broken that I am no longer in a position to bring an income into our home, but also know that with referrals to many different specialists, and the added services Sam will be getting now...I am needed here for her. She begins Early Intervention Therapy next Monday and Wednesday from 9am-11:30am still with Ms Tara who is amazing! We will have speech resume as soon as possible and that will require 1-2x/week trips to Vanderbilt. Sam will also see an occupational therapist on occasion temporarily until no longer needed.
I am again, as usual, overwhelmed and mentally drained from all of this new information. I really admire Samantha for being able to just get up each morning and take on whatever the day brings with no worries about tomorrow, next week, or next year. This week has been one of the hardest for me and I struggle very hard to be accepting and understanding of all of this.
I ask for continued support and prayers. You all have been so amazing and we are so blessed. I will send you information and articles I find from time to time. If you don't wish to read them that's OK, just hit delete. I just know some of you have said you wished you knew more or could do more, and this is a good place to start.
Hope you are all well and we love you lots!
From Wednesday January 7th, 2009
Sometimes, things get a litte too real.
As some of you know, who read my blogs or know me closely, my daughter was diagnosed with PDD (Pervasive Development Disorder) this past year. While after several misdiagnosis and failed attempts to pinpoint her developmental delay, I welcomed this "label" as it opened up a lot of doors for us with what services our insurance would provide. The developmental pediatrician who diagnosed Samantha explained clearly that she was on the Autism spectrum but at only 2 he wasn't ready to place a lifelong label on her just yet. I didn't care. I finally had somewhere to start, something to research, and a clear direction for helping my little girl. Even if it was just a notation on her records in order to get her some help. I would have called her a Martian to get her help at that point.
I cannot begin to list all of the wonderful support I have received from my closest friends, not just for Samantha directly, but for myself as a mother struggling to understand and accept what has been handed to me. We began all of the necessary services, therapists, interventionists, etc. etc. etc. Samantha has shown many signs of progress, yet still displays great delays.
Last night I attended my 1st Autism support group meeting. While there I borrowed a book many have suggested I read. Now I am not a fan of celebrities cashing in on their name in order to sell a book deal about how they have it so hard. I usually skip over any book penned by a celeb as just another way to put my buck in their pocket. However Jenny McCarthy's book Louder than Words sat in front of me on the shelf and for whatever reason, I took it.
For those who don't know, unless it's a history book on the English Monarchy, I rarely finish any book in less than 6 months to a year. I just am not a leisure reader. However, I have had this book less than one full day and am almost done with it. Every page I read is like a light coming .. wandering through months of darkness, hands outstretched, and feeling for any sign of progress. While her son suffered seizures and my daughter does not, all of the "quirks" she saw in her young child and brushed off as genius, innovative, and above age level are the very same I myself notice in Sam everyday. While reading this gets harder with each page as the realization of reality sinks in for me, I continue to turn the page almost as if for validation that what I have been scared of and suspecting is in fact truth.
His behaviors, speech patterns, social interactions, playtime behaviors, routines, all of it….it's like someone watched my child from a hole in the wall and wrote down her very existence! It's both comforting and terrifying to read. I'm not alone, but also this is very real. Now what to do about it? My 1st step is to finish this book, and then get another, and another. A doctor once told me that most disorders are 1st diagnosed by a proactive parent before a physician will ever notice it and suggest further evaluation. That's how I have got this far. I guess I just have much further to go than I thought.
Today, again, I feel overwhelmed. I feel lost, unsure, and so saddened by all of this. I know that part is my cross to bear and I will do it as best I can for my child. She need never know what a struggle this is for me. She need only be assured that I am always fighting to help her be the beautiful spirit she truly is.
So to my friends, and my family, please be patient with me if I seem distant, distracted, or uninterested. Just as I may cling to some of you in a more demanding way than usual or need you more than you might want. Either way, I am sorry, and ask for nothing more than some compassion.
As some of you know, who read my blogs or know me closely, my daughter was diagnosed with PDD (Pervasive Development Disorder) this past year. While after several misdiagnosis and failed attempts to pinpoint her developmental delay, I welcomed this "label" as it opened up a lot of doors for us with what services our insurance would provide. The developmental pediatrician who diagnosed Samantha explained clearly that she was on the Autism spectrum but at only 2 he wasn't ready to place a lifelong label on her just yet. I didn't care. I finally had somewhere to start, something to research, and a clear direction for helping my little girl. Even if it was just a notation on her records in order to get her some help. I would have called her a Martian to get her help at that point.
I cannot begin to list all of the wonderful support I have received from my closest friends, not just for Samantha directly, but for myself as a mother struggling to understand and accept what has been handed to me. We began all of the necessary services, therapists, interventionists, etc. etc. etc. Samantha has shown many signs of progress, yet still displays great delays.
Last night I attended my 1st Autism support group meeting. While there I borrowed a book many have suggested I read. Now I am not a fan of celebrities cashing in on their name in order to sell a book deal about how they have it so hard. I usually skip over any book penned by a celeb as just another way to put my buck in their pocket. However Jenny McCarthy's book Louder than Words sat in front of me on the shelf and for whatever reason, I took it.
For those who don't know, unless it's a history book on the English Monarchy, I rarely finish any book in less than 6 months to a year. I just am not a leisure reader. However, I have had this book less than one full day and am almost done with it. Every page I read is like a light coming .. wandering through months of darkness, hands outstretched, and feeling for any sign of progress. While her son suffered seizures and my daughter does not, all of the "quirks" she saw in her young child and brushed off as genius, innovative, and above age level are the very same I myself notice in Sam everyday. While reading this gets harder with each page as the realization of reality sinks in for me, I continue to turn the page almost as if for validation that what I have been scared of and suspecting is in fact truth.
His behaviors, speech patterns, social interactions, playtime behaviors, routines, all of it….it's like someone watched my child from a hole in the wall and wrote down her very existence! It's both comforting and terrifying to read. I'm not alone, but also this is very real. Now what to do about it? My 1st step is to finish this book, and then get another, and another. A doctor once told me that most disorders are 1st diagnosed by a proactive parent before a physician will ever notice it and suggest further evaluation. That's how I have got this far. I guess I just have much further to go than I thought.
Today, again, I feel overwhelmed. I feel lost, unsure, and so saddened by all of this. I know that part is my cross to bear and I will do it as best I can for my child. She need never know what a struggle this is for me. She need only be assured that I am always fighting to help her be the beautiful spirit she truly is.
So to my friends, and my family, please be patient with me if I seem distant, distracted, or uninterested. Just as I may cling to some of you in a more demanding way than usual or need you more than you might want. Either way, I am sorry, and ask for nothing more than some compassion.
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