Sunday, December 16, 2012

Another day, another dilemma







So, I know that I haven't blogged in a while.  A lot of things have been going on in my busy life.  We have recently gotten our daughter reevaluated to determine eligibility for special education services when she begins kindergarten next year.  This evaluation consists of numerous observations and standardized testing scenarios.  This has made our already hectic schedule even more hectic than usual.  

Her recent eligibility meeting determined that she does fall under the Autism label within the school system.  Previously she was under the label of Developmental Delay.  I am extremely concerned about the change of labelsThose within the school system have told me that labels do not determine placement.  I will believe it when I see it.  The area we live in doesn't seem to offer much when it comes to full inclusion in schools.  What usually happens is that the kids with Autism spend sometime in a regular classroom, but a good part of their day is spent in a self contained autism classroom.  I have made it known that this is not an appropriate placement for my child.  With minor assistance, I am sure that she will be able to function in a regular kindergarten classroom with minimal pull out.  Hopefully we will be able to rock the boat and get my little girl the "Free and Appropriate Education" that she is entitled to by law.  

At this point though, she is doing really well.  She is talking and commenting more, and has even developed somewhat of a sense of humor.  She has started to say things that are kind of off the wall and then laugh.  The other day, I asked her what her teddy bear's name was and she replied, "Ellie", and then she killed herself laughing like it was the funniest thing she had ever heard.  I am thrilled that she is able to start to find the humor in life.  Do you know how hard it is to teach someone to have a sense of humor?!?  It is nearly impossible to explain why something is funny, and by the time you have explained it, it really isn't that funny anymore.  

I have also been quite concerned about my son.  He is almost 15 months now and is still quite delayed with his speech.  He is getting speech therapy once a week and is making progressBut when you have one child on the Autism Spectrum, you tend to over analyze and worry about anything that your second child does that could be seen as odd.   Especially when your second child is a boy and Autism is so much more prevelent in boys.

My son is in a sibling study at a major autism research center.  He will be evaluated every four months for the next year, and then he will be seen once or twice a year after that.  They look at every aspect of his development.  When I recently took him to his 14 month visit, I was very concerned.  They did confirm that he has a significant speech delay.  When I asked them point blank if they thought we should go ahead and pursue ABA therapy for him, the evaluator said,"Not at all."  She sees many children on the spectrum and she did not think that he fell into the category of autism.  It's amazing how relieved I felt.  I didn't even realize how worried I had been.  I think that my worry is what has kept me from blogging for such a long while.  I just couldn't write about what was going on while everything was still so up in the air.  I guess in my mind,  if I wrote about it, then it might have come true.   

I am well aware that we are not completely out of the woods with my son.  Until he starts really talking and engaging with other children, I probably won't be able to fully relax.  But in the meantime, I am going to try to take it day by day and focus on all of our many blessings.  As recent national events have shown, you never know how long you have with your children.  I intend to try my hardest to make their lives as full of joy as I possibly can.  This may mean more time playing and less time cooking or cleaning.  (Not that I have ever really been Suzie homemaker or Betty Crocker.)  I just think that they will benefit more by my being emotionally present in their lives than if I was merely physically present with a really clean house and a huge meal on the table everyday.

 

Monday, November 12, 2012

My Little Patriot





It's amazing how oblivious you can be to what your kids really know.  The other day, I was coming home from an appointment with my son.  I pulled up and saw my daughter in the yard carrying around one of those little Lowe's flags that you can use to mark where your irrigation system is located.  I just thought that she was playing with the flag and waving it around.  When I got out of the car, my babysitter proceeds to inform me that my daughter had just said the Pledge of Allegiance to the Lowe's Home Improvement flag.  I didn't even know that she knew the Pledge.  Later that day, I asked her to say it again, and there she stood with her hand over her heart and recited the entire pledge.  My child that doesn't really talk and is socially inappropriate knew exactly what she was supposed to say and do when she saw a flag.  I find that astonishing.

It goes to show that you never know what your child is  picking up on, or what they already know.  I think that my daughter has a huge amount of information stored up there in her little brain. Little by little, she is conveying it to us.  

This little experience makes me realize that I have to be acutely aware of my daily actions.  She is watching what I say and do, and although I may not really think that she is paying attention to me, she is taking in much more than I realize.  

Friday, October 12, 2012

Don't Judge a Book by it's Cover






My daughter has horse therapy each week.  I recently had to call the director and speak with her about a few concerns I had.  My daughter was enjoying riding but she would kind of shut down after each session.  It would take a good thirty minutes or so for her to start talking to and making eye contact with me again.  The volunteers that were helping her would ask her to say or do something during the session, and when she would ignore them, they would just keep walking beside her horse and let it go.  If you know my daughter, you know that she will test you to see how much she can get away with.  If she doesn't have to talk, she won't.  If you cater to her, she will take full advantage.  Not that I blame her.  If people catered to me all day, I would probably sit back and let them also. 

When we arrived at horse therapy yesterday, they had placed a younger volunteer with her.  I am sure she was probably in college, but she looked like she could have been in high school.  I thought to myself,  here we go again.  Surely, this young girl wouldn't have any clue how to deal with my daughter with autism.  

Well, I am happy to admit that I was completely wrong.  This girl had my daughter saying and doing things on the horse that none of the other volunteers had been able to.  She was kind to my little girl, but she insisted that when she asked a question that my daughter answered.  They were a perfect match.  After the session, my daughter was more engaged with me.  She made great eye contact and answered when I asked her about the lesson.  This is a huge improvement from the previous sessions.  

Even though I have spoken previously about not judging others, I realize that I am sometimes guilty of doing just that.  This little experience has opened my eyes to the fact that if I expect others to be less judgmental, then I need to hold myself to those same standards.  I will do my best to be less skeptical regarding the people who work with my daughter.  Maybe one of these days I will listen to my own advice and  not "judge a book by it's cover".

Monday, October 8, 2012

Reality Check





So, I took my daughter to her new "school" speech therapist today.  I say "school" therapist, because my daughter also gets private speech therapy each week.  The new therapist is located in what will probably be my my children's elementary school.  As I pulled up to the school, a million thoughts ran through my head.  Reality hit me smack in the face.

I can't believe that my little girl is almost old enough to be going to "big" school.  In less than a year, she will be a student there.  The thought of having to pull up in the car rider's line and possibly having to just drop her off terrifies me.    Will I be able to walk her in each morning?  Will they make exceptions to the rule that kids have to walk to their own classrooms, or will she be ushered in by some random person. What if she gets lost and no one realizes.  What if she throws a tantrum and the people around don't know how to deal with it, or worse, what if they yell at her because they do not realize that she has autism.  I mean, she looks normal, so it is very possible that somewhere down the line someone will fuss at her for not responding to them, or ignoring them when they tell her something.  

The idea of her spending an entire school day on her own terrifies me.  I know we have yet to decide what her education plan will be like for next year.  But I still couldn't help but feel overwhelmed when I pulled up to her "big" school.  Hopefully by next year, I will be more mentally prepared. 

Friday, October 5, 2012

From the heart.







When I got to my daughter's preschool yesterday, the assistant teacher met me at the door and said, "Your daughter made me cry today".  I immediately thought, "Oh Lord, what has she done now?".  The teacher, Miss Jennifer,  has gotten another position at a county run preschool and is going to be finishing out this week and then leaving this preschool.  She started tearing up again as she told me what had happened.  Evidently, my daughter had gotten dirt in her eye on the playground and was whimpering.  The teacher pulled her up onto her lap and was trying to convince my little girl to let her see her eye.  My daughter said, "No"  quite emphatically multiple times.  When she couldn't think of how she could convince my daughter to let her see her eye,  the teacher told her, "Miss Jennifer is leaving next week and we won't get to see each other anymore.  Can I please see your eye?"   My daughter immediately stopped crying, looked up at Miss Jennifer, and said, "Don't go Jennifer".  Jennifer said that she couldn't help but start to cry.  If any of the other kids had said this to her she probably wouldn't have gotten so emotional.  But that fact that my daughter, who rarely speaks, actually looked her in the eye and said this to her really touched her.  I was touched when Miss Jennifer told me too.  I hate that Miss Jennifer is leaving, but I am thankful that she was able to make a connection with my daughter. 

My daughter never ceases to amaze me.  She doesn't say much, but what she does say is full of meaning and comes straight from her heart.  Sometimes we question whether she is understanding what is being said to her.  This shows me that she understands more than we give her credit for.  Maybe if we just slow down and listen more, we will get a clearer view into her little world.


Tuesday, October 2, 2012

The Secret's Out.





When my daughter was diagnosed with autism, my husband and I had no clue what that really meant.  We walked out of the doctor's office and had no idea what to do or where to turn.  We just knew that our daughter's life would never be what we had envisioned.

It took us some time to tell our families.  It took us even longer to tell our friends.  We had so many questions.  What if the doctor was wrong and we had prematurely labeled our child with this diagnosis that has such an ugly stigma.  Would she grow out of it and no one would ever have to know?  It seemed so similar to having a death in the family.  We went through the five stages of grief  (Denial, Anger, Bargaining, Depression and Acceptance).  The bad part was that we went through all of this completely on our own.  It was not that we didn't trust our family and friends to be understanding.  We just couldn't bear the thought of facing the multitude of questions we knew we would receive.  I mean, how on earth could we answer the questions that others surely would have, when we were still searching for our own answers.  

We eventually told our immediate families.  We talked it over and decided not to tell aunts, uncles, cousins or friends at that time.  Telling everyone would make the diagnosis real.  It was almost as if, as long as we didn't talk about it, it couldn't be so.  Of course, the autism didn't go away.  The doctor wasn't wrong.  That meant we eventually had to tell the rest of our family and our friends.  The reactions that we received varied greatly.  Some just said how sorry they were that this had happened to us.  Others questioned the diagnosis with statements like, "What in the world makes the doctor think that?"  Nothing that anyone said could have helped.  We didn't want people to feel sorry for us, and we sure didn't feel like having to justify a diagnosis that we would have given anything to have been wrong.  

I sadly remember that we decided not to tell my daughter's cousins.  We just felt that they were too young, and we didn't want them to treat her differently or think differently about her.  I later found out that the older cousin had overheard her grandmother speaking to a friend at church about her granddaughter having autism.  The older cousin was so upset.  She cried to her mother and said, "how could this lady at church know that her cousin had autism, when she didn't know and she was family."  When I found out that this had happened it broke my heart.  I was not mad at my mother in law for talking to her friend about my daughter having autism.  She surely needed someone to talk to and we needed all the prayers we could get.  This event just helped me to see that we weren't doing anyone any favors by keeping the information to ourselves.  I felt like I had wronged my niece by not trusting her with this information.  She was young but has always been mature.  Looking back, we should have been up front with her about the autism diagnosis.  My niece is growing into a beautiful young woman and she is absolutely wonderful with my daughter. 

Since the time after my daughter's diagnosis, my outlook has totally changed.  I felt so alone after I was told my daughter had autism.  But when I finally started confiding in others about my situation, it was amazing the amount of people who had a child or knew a friend whose child was on the spectrum.  If people had been more vocal about their own experiences, I probably wouldn't have felt quite so alone during that scary time.  

The fact that one in eighty-eight kids is diagnosed with autism speaks to the fact that many more people are affected by this diagnosis than we realize.  Just because children with autism have trouble speaking, that doesn't mean that the families and friends of the children should have no voice.  My goal is to increase awareness.  I hope that others who are in the midst of the grieving process after receiving an autism diagnosis won't feel quite so alone in their journey.

Saturday, September 29, 2012

Have you ever?





I have a question for all the moms out there.  Have you ever been riding down the road after dropping the kids off somewhere or leaving them with your husband at home, and notice after a good five or ten minutes that you have been rocking out to Elmo in the car all by yourself?  Oh, you haven't?  Maybe it's just me then. 

My kids love to watch the dvd player in the car.  We always have on Barney, Elmo, or some other (not annoying at all) DVD playing.  My daughter has yet to master wearing the headphones for any length of time.  She usually will wear them for about five minutes and then take them off and drop them in the floor.  Then she will say, "Sound on please".  She doesn't understand that she would be able to hear if she would just leave the stinking headphones on.

Since the kids don't wear the headphones with any consistency yet, I am often left to endure listening to the wonderful music they just can't seem to get enough of.  As much as I hate to admit it, after a little while, I can't help but start bobbing my head a little.  This is only really embarrassing when I am the only one in the car, and I have forgotten that I am finally on my own.  Sometimes life is just so busy that when I finally have a little bit of a break, I forget how to be a real person, not just a mom.  Thank goodness no one else can hear what I have been listening to.  I still feel embarrassed when I finally pay enough attention and realize what I am doing.

When I do find myself kid free (even if it is just for a trip to the store), I will immediately turn to a radio station, or I play a CD that I love.  I get so much satisfaction out of those few minutes of alone time.  Sometimes it is just so nice to be able to focus on no one but yourself.  I love being a mom, but it is also nice to just be me once in a while (even if those times are few and far between).

 

Thursday, September 27, 2012

Method to my madness.







This week has been insanely busy.  On top of my daughter's many therapies and activities, I have decided to join some advisory councils.  Yes, I said councils, plural.  You think that I am crazy, right?  There is a method to my madness.  I don't think that I'm crazy,   I'm just really invested in my kids.  

I have joined the interagency coordinating council in our county.  It has representatives from Child Find, Early Intervention, DSS, Smart Start, the Arc, etc.  I think that this will be a perfect place for me to be able to network with the people who have the power to make decisions that affect my children.  Since I have a child in Child Find and another in Early Intervention, it's kind of like they get a two for one deal by having me as a parent representative on the council.  

I have also joined the Advisory council for the special needs preschool in our area.  My daughter does not attend this particular school, but her resource teacher is based there.  They wanted someone who could speak to the needs of the children who are being resourced.  My reason for joining this council is so that I can gain as much information as possible over the next school year.  When the time comes for me to make decisions regarding my daughter's elementary school placement and benefits, I hope to be as knowledgeable as possible.  I also figure that it won't hurt to try to get on the good side of those who will be in those decision making meetings.  

Hopefully I am not spreading myself too thin.  I do have someone to help out with the kids during these meetings, so I don't have to drag them along kicking and screaming. I don't really think that I am crazy for having a schedule as jam packed as mine.  I am just looking for every opportunity I can to help my daughter (and eventually, my son) be able to succeed in the school system.  

Monday, September 24, 2012

That's what friends are for.



When my daughter was around eighteen months old, I started noticing that she wasn't talking, she often avoided my gaze, and she rarely acknowledged the presence of anyone else in the room with her.  Since we were fairly new to our community, and we didn't have many friends or family seeing our daughter on a regular basis, our friends and relatives we talked to on the phone often downplayed our concerns.  I frequently heard, "you are a PICU nurse, you are just used to looking for something to be wrong", or "This is your first child, she will talk in her own time".  As a mother, this was surely what I wanted to hear.  I wanted others to tell me that I was crazy, and of course that my daughter was fine.  

Even though my little girl didn't meet her milestones at her 12 month and 18 month doctor's visits, the doctors assured me that all kids develop at a different pace, and that we should wait until the next visit to see how she was progressing.  I know now, that early intervention is key.  I feel like kicking myself for not pushing the issue with her doctors, but once again, I wanted them to tell me that everything was fine.

It wasn't until my best friend and her family were visiting that I came to the realization that something was truly wrong.  My friend has three children.  At the time their ages were 12, 5, and 18 months.  Her little girl was just about six months younger than my daughter.  While they were visiting, it was very apparent that my daughter was delayed.  My friend's little girl was following two and three step directions.  She would look at you and answer immediately when she was asked a question.  She was basically running developmental circles around my daughter.  When my friend's family was interacting with my daughter, she rarely looked at anyone when they spoke to her.  She didn't respond to questions, and she surely didn't follow directions, one step or otherwise.  She had quite a few meltdowns while they were visiting.  She wasn't used to having that many people around, and she didn't know how to cope with being so overwhelmed.  

One night, after a particularly trying day, I put my daughter to bed and I sat down on the couch with my friend and started crying.  It was so apparent that something was wrong with my daughter.  She was just so delayed compared to my friend's daughter.  My friend sat with me and affirmed that she also recognized that something was not right.  I can only imagine how hard this was for her to say to me.   It takes a true friend to sit down with you and be totally honest in such a uncomfortable situation.  I could have been angry with her, I could have stopped talking to her, but she cared enough to say what needed to be said.  I love her dearly, and through both of our personal trials, we have only gotten closer.  It is rare to have someone who you know, without a doubt, will be there for you no matter what.  I will be eternally grateful to her for being so honest and for caring enough about me and my daughter that she would tell me the truth instead of telling me what I wanted to hear.  I am very blessed to have her in my life.

After that visit, I started to get ball rolling.  I sought help from people at work (the hospital) who had experience with developmental delays, and I started looking into the Early Intervention Program through the county.  When her two year old appointment came up, I did not ask what the doctor thought, I went into the appointment and I insisted that we see a developmental pediatrician.  My friend's family came to visit at Thanksgiving.  By December, my daughter was receiving OT and ST.  By the next March, she had officially been diagnosed with Autism.  

If we hadn't pushed to get her services, who knows how long it would have taken for the doctors to recognize that there was need for them.  If my friend hadn't been so honest, who knows how long it would have been before I acknowledged that my daughter was delayed.  Even though hearing that something was wrong, and finally receiving the autism diagnosis was probably the most challenging time in my life, I learned some things through dealing with it.  One, I am very blessed to have such a wonderful friend and support system.  Two, I am stronger than I realized.  I never thought that I would be able to deal with a special needs child, but God continues to daily give me patience and gradually he is helping me to accept this diagnosis.  Three, I realized that I have to be my child's advocate.  A mother always knows when something is not quite right.  In nursing, I would often get a gut feeling that often turned out to be spot on.  As a mother, I had that gut feeling, but I second guessed myself constantly when others told me that everything was fine.  Now, if I feel that something is not right, I push the doctors, teachers, and therapists until whatever is going on is recognized.  

I am a stronger woman because of this experience.  I think that I was supposed to have a child with autism.  I don't think that it was a mistake.  God gave her to me to make me a better person, and I couldn't love her more.

Thursday, September 20, 2012

What did you say?



So I took my little guy to the Audiologist to get his hearing checked.  We didn't really suspect hearing loss, but when your baby isn't babbling, they usually rule it out.

Well, my baby that doesn't babble started babbling up a storm the minute we got into the office.  He was loud and making all kinds of sounds (ga, ba, da).  He was babbling so much that the woman behind the desk actually peeked her head around the corner and asked why I wanted him evaluated.  I said, "It's because he doesn't babble.  Can't you tell?"  (as he continued to babble away).  

About a month ago, all he was saying was Aahh.  In no time at all though, he has really found his voice.  He seems to be babbling more each day.  This of course is music to my ears.  We are still continuing speech therapy for the time being.  I want him to continue to progress until he is talking age appropriately before we stop.  Maybe the speech therapy was just the little push he needed to be encouraged to talk.

By the way, he passed his hearing test with flying colors!

We often assume that our children will do things in their own time.  But, after you've had a child diagnosed with autism, you tend to watch each child's development like a hawk.  Hopefully he will continue to develop his communication skills, and by the time we visit the developmental pediatrician again, my boy will be meeting his milestones.  
But, in this moment, I am just thankful that he is starting to learn to communicate with us vocally.  

Wednesday, September 19, 2012

1 in 88




When my daughter was diagnosed with autism, I felt completely blindsided.  I was prepared for all kinds of other issues, and even though autism affects so many kids, I had never really thought of it as a possibility with my own child.

I knew that I could have a child and there could be an accident at any time.  I saw things like that all to often working in the Pediatric ICU.  I also didn't count out the fact that I could have a child with a heart issue or who developed cancer.  I saw those things often as well.  Even with the multitude of different diagnoses that I saw each day, I never even considered autism as a potential issue.  

I vividly remember a day, not long after my daughter had been diagnosed, that I was working in the Neonatal ICU.  I was in a back room (thank goodness), and I was feeding and rocking a baby that had down's syndrome.  I remember just looking at the baby with tears streaming down my face, thinking, "People will always know that something is different about you".  I never thought that I would feel jealous over the fact that my child only had a developmental delay instead of having a physical problem.  I was sad that my child would always be looked at as a brat, not a child with a disability.  When others observe my child, they just look at her like she is weird or at me like I am a bad parent.  No one ever thinks, "that child must have a developmental disorder".  If she had some type of physical deformity as well, others would probably think differently about her.

A child with a physical deformity often receives more understanding from the general public.  A child with autism usually gets dirty looks due to their "bad" behavior.  My husband tends to get somewhat embarrassed when my daughter throws a fit in public.  Since she looks normal, we as parents tend to try to prevent her from acting up, or we feel that we have to explain our child's diagnosis to random bystanders.  It is as if when the strangers  understand that something really is different, then we will not look like slacker parents, and our daughter will not look like a brat.  

Sometimes though, I don't feel like explaining anything to anyone.  I feel like I should be able to go out and not have to worry about the opinions and rude looks given to us by others.  I have seen these shirts that you can get for your child to wear that say, "I'm not misbehaving, I have autism".  I think that it is great for others to recognize that something is different, but this also can call unnecessary attention to the child.

It is my hope that one day people will be more accepting.  If more education is given to the general public, I believe that society as a whole will rally around these children.  But, if I as a medical professional didn't really know the first thing about autism, how in the world will the rest of society ever learn enough to be able to accept the one in eighty-eight babies that are born who will eventually be diagnosed with autism?

Tuesday, September 18, 2012

Brother and Sisterly Love




Even though my daughter tends to have a short fuse when it comes to my son, I know she loves her little brother.  

The first time I realized that she really cared about him was when we were visiting my parents.  The kids and I had ran an errand in town, and we had just arrived back at Mimi and Granddaddy's house.  I decided that since I was alone I would take my four year old inside the house first.  Previously I had either been with someone else who could help with both kids, or I had been in the garage with the door shut so my daughter couldn't escape while I was tending to my son.  Well, my daughter and I got to the front door, and as I unlocked it and began to set the bags that I had been carrying down, my daughter said my son's name loudly.  She was telling me that I better not forget her brother.  This was a huge step considering that up until this incident, she had either ignored or fussed about her brother.  I thanked her for telling me to get him, and I promptly went back to the car and brought him inside.

She looks out for her brother in her own little way.  If he is getting into something, is trying to climb the stairs, or is touching something she thinks that he shouldn't be, she says loudly, "I need help please".  She makes sure that I am aware anytime he is doing anything the least bit naughty.  This is really big for her, because it means that she is actually starting to pay attention to someone other than herself.  Kids with autism are often very ego-centric,  it is hard for them to think about anyone except themselves or anything that doesn't effect them individually.  The fact that she pays any attention to him at all is amazing.  Lately, she has even started to physically put her arms around his waist to pick him up when she thinks that he is doing something he shouldn't. 

 My son definitely loves his big sister.  I will never forget his serious expression whenever we spun her around or played with her by turning her upside down (this type of play helps with sensory issues).  He was about five months old at the time.  He would just watch us stone faced.  It was like he was thinking, "You better not drop my sister".  He always wants to be near her and is interested in whatever she is doing or playing with.  He smiles at her whenever he sees her.  Often times, she wants nothing to do with him, and heaven forbid he touch her toys, but he is evermore the persistent child.   If she would just let him into her little world, they could have so much fun together.

It is remarkable that they can care for one another the way that they do.  It is almost as if it was ingrained in them from birth that you need to take care of your sibling no matter what.   Hopefully as they both get older, they will be able to play together more.  If his language comes along, as I pray it will, maybe hers will improve as well.  Hopefully, over the years, they will be able to enrich each others lives in ways that no one else, other than a sibling, could.

Sunday, September 16, 2012

Deja Vu All Over Again





My son has been getting speech therapy for the past month.   As you can probably imagine, I am pretty concerned about him having any sort of delay.  

Whenever I tell someone that he is getting speech therapy, they ask, "How on earth can they already tell if there is a speech delay, he's not even a year old?"  People sometimes say things like, "I am sure he will be fine"," You are just looking for something to be wrong", or "He's a boy.  Boys talk later than girls".  Well, I pray that all of these things are true, but I know that it won't help anything if I just stick my head in the sand and ignore reality.  If he does have autism, early intervention is key.  The earlier we can start therapies, the better chance he has at overcoming any developmental obstacles he is facing.  At ten months he wasn't saying anything but "Aaaah".  Not ma-ma, da-da, ga-ga, ba-ba, etc.  They identify that as a communication delay, so we started speech therapy.

We are trying to be optimistic.  But even though we hope for the best,  we try to prepare ourselves for the worst.  Research has shown that siblings of children with autism tend to have speech delays.  With my son, it probably has to do with the fact that my daughter will scream at him or throw a tantrum when he starts babbling.  I don't know if it just gets on her nerves or what the exact problem is, but I can't seem to stop her from fussing when he makes vocalizations.  In ABA therapy we sometimes bring my son into the sessions so we can try to identify ways that we can get them to play together more, and her tolerance for his babbling and his constant attempts to get into her space will get better.  

I do recognize that my children are very different from one another.  My son does things that I don't remember my daughter doing.  He laughs easily, he cries when people leave the room, and he dances to music.  It took a lot to make my daughter laugh, she could have cared less whether anyone else was in the room or not, and I never remember her bouncing up and down to music.  Socially, my son is very age appropriate.  He smiles, laughs and cries when he wants your attention.  All good things.

 I pray that my son doesn't have autism.  In no way does this mean that I don't love my daughter for the amazing person she is.  She is so smart.  She is only four and can read and count to who knows how high, but I know her life would be so much easier if she was "normal".  It is so sad when she doesn't play with or even pay attention to her little brother.   It hurts my heart when she completely ignores other kids and then they look at her funny; when she goes somewhere like dance class and starts running around singing songs instead of sitting down like the other little girls, I hate it when I see other mothers start to whisper about her.  I accept her totally for the person she is, but I know that she has a very hard road ahead of her.

My son is already making progress with his babbling.  I am hoping that he is just a little delayed, but in the back of my mind I will always be wondering if he could be on the spectrum also.  

We thought about that possibility when we decided to have another child.  Since they don't know what causes autism, it could be genetic.  We really struggled with the decision to have another baby.  We finally decided that God had given my daughter to us for a reason, and if he decided to bless us with another child, no matter what, that is what we would view it as, a blessing.  

I am a better person for having been given the opportunity to raise her.  I am much more patient, much less hot headed, and I don't worry over the little things that I have no control over.  I have learned to accept that God is in control and not me.  For a somewhat controlling person, this has not been easy.  I like having a plan.  I like knowing what is coming up next.  He has no doubt shown me that my insistence on always having to have a plan was ludicrous.  I have no real control over anything.  I just have to take each situation as it comes, and adapt as best I can to whatever is placed in my path.

Since my daughter was diagnosed, I have found that I can make all the plans in the world, but I still have no idea what tomorrow will bring.  I try my best to take life day by day and to enjoy the little victories instead of waiting for something really big to rejoice in.  I have to be happy where I am.  Who knows where I will be tomorrow? 



  

Friday, September 14, 2012

Little Miss Independant






So last week my husband asked me, "How are you going to keep that blog thing going?  Won't you eventually stop having anything to write about?"  I told him that with our kids, I would always have something random happening that I could put in my blog.  Well this week, my little lady did not disappoint.

So, my daughter was in the den on her Ipad.  This is not unusual for her as it is one of her favorite things to do.  I was in the study doing something on the computer.  After a few minutes, my daughter came into the study and started grabbing at my arm.  This, however, was very unusual.  My little electronic genius is  normally so engulfed in her Ipad that she doesn't bother me for a while.  I take those opportunities to get my mommy stuff done.  You know, cleaning up the room for the millionth time each day, working on the computer, etc.  Besides, she normally just says what she wants from wherever she is sitting.  Not to often does she physically get up and come get me for something.

As I started to ask her what she needs, I turned away from the computer and I immediately smelled smoke.  I ran into the den and I saw that the entire kitchen was full of smoke.  My first thought was not that I had to get everyone out of the house and to safety, it was that I had to put out whatever is on fire and get the smoke out of here before it sets off the fire alarm and wakes up my son.  Not the most rational thing to have thought, I realize now, but after having waited all afternoon for him to finally take a nap, I can tell you that I feel validated in having had those thoughts. 

When I got into the kitchen, I saw that a chair had been pulled up to the counter, and the microwave door was open with a very crispy black eggo inside.  The only reason that I knew it was an eggo was because the opened box was still on the counter and the freezer door was still open.  I don't know whether the eggo had actually been on fire, or it had just been smoking, but I do know that every time I turn on the microwave now, it makes my kitchen smell like smoke again.  

When I told the therapists what had happened, they asked me what I said to her.  To be honest, I was so shocked that I probably didn't say much of anything.  After I finally regained my composure, I told her that she needs to get mommy when she wants to use the microwave.  I do wonder if she understands the danger though.  Who knows if she will come and get me next time?  My husband asked if we should just teach her which buttons to push on the microwave so she knows how to use it properly.  I think that she could more that likely learn how to work the microwave, but something just doesn't feel right about teaching a four year old how to use a cooking appliance.  For now, we are putting that one on hold.

You never know what is going to happen in my house day to day.  My daughter had never tried to use the microwave before, so I had no reason to think that she would that day.  It just proves the point that you can't trust a four year old who is quick and quiet.  Now I realize that I need to keep my eyes on her at all times (if that is possible when you have more than one kid).  I will try to do my best.  But just to be safe, I have made sure that we know where the fire extinguisher is in case she ever tries to imitate Julia Child again.

 

Thursday, September 13, 2012

Uncharted Territory





 I feel like I am entering into uncharted territory.  With all of my daughter's therapies, I have always felt that our life has been fairly busy.  But I am  afraid that until now, we "ain't seen nothing yet".  

I am not ashamed to admit that I am a homebody.  I have always said that if  I could stay within the four walls of my home  for days at a time, I would be perfectly happy. Once again, God has shown me that he has other plans for my life.  I have definitely had to adapt to the fact that His plan is turning out to be very different that mine.

Our new schedule, or to be more exact, my daughter's new schedule, is crazy!  This has been the first week of five mornings of preschool. We have also started dance therapy and we continue horse therapy.  ABA each day and private Speech Therapy once a week continue as well.  In the next few weeks, we will add a social skills group at preschool and additional Speech Therapy within the school system.  

Every day is filled with my chauffeuring her to and from her numerous activities.  Thank goodness that I have a "Mom's" calender that I can keep up with everything.  It has a daily column for each family member.  I start each morning looking to see what that day's activities are.  My mother has already bought me one for next year that I plan to start filling up as soon as I get it this weekend.  If I didn't have this calendar, I could never keep up with all of the things that our family has scheduled.

Prior to this week, I had some anxiety over whether we were scheduling too many things for my daughter.  So far though, she seems to love everything she is doing.  She has had less tantrums and fewer potty accidents this week. Being busy seems to suit her.   She is definitely more like my husband in this regard.  He always has to be doing something.  Whether he is fiddling in the garage, or taking care of the yard, he always has to fill any downtime with things to keep him busy.  The only time he sits down is in the evening after the kids have gone to bed.  I, on the other hand, am not like this.  If I get a chance to rest, I take full advantage of it.  One of the best gifts that I have ever gotten was a nap for my birthday.  My husband took the kids out of the house and I was able to nap for three glorious hours.  It was wonderful.  My husband swears by ten minute power naps.  These do nothing but make me more tired. 

I feel very blessed that my daughter is adapting to her new schedule so well.  Lots of kids with autism have major issues with transitions.  She has taken it all in stride this week.  

Who knows?  This may be the calm before the storm.  Next week may be horrible.  When all heck breaks loose, like I am sure it eventually will,  I will have plenty of time to worry about it then.  But for now, I am just going to appreciate the fact that everyone seems happy and content for the moment.