Friday, March 18, 2011

My Second Child on the Spectrum

Writing this, only hours have passed since getting my daughter's Asperger's diagnosis.  Every post that I have written so far has been about my son.  Starting today, I will write about my daughter as well.

My daughter, she just turned four in January, is the happiest, calmest little gal you will every meet.  Always singing, loves spinning dresses, cats, princesses...the typical girl.  What started concerning me was the lack of wanting to play with other children her same age.  I assumed that it was because she is home with me and her brother all of the time and is lacking that social piece that you get from being at daycare or school.  She was at a great daycare for two and a half years before I decided to stay home.

When I decided to stay home I decided not to stay home.  Sounds contradicting?  Well, although I get to "stay home" with the kids, "at home" is rarely where we are.  Between playgroups, story times, gymnastics, lego club, sports...we are never home!  I know that social development is so important that I knew they needed more than me in their lives.

Learning about Kyle and his diagnosis of Asperger's (something I had never heard about until like three years ago) I found it very important to research everything I could about the spectrum.  One piece I learned was that it is diagnosed more in boys than girls and one reason for this is that girls have different ways of showing it.  The little hints I was getting from Caitlin, my wonderful little girl, I first passed off as paranoia.  The lack of social progression I passed off as that she was the baby of the family and that she "stays at home" with me.  I started to become worried, spoke with the pediatrician (who was equally, if not more concerned) and then she was evaluated by child development doctors.  They were very glad that I listened to my instincts instead of passing them off.

So, I was sitting in the room (Caitlin was hiding in the corner) when they went over the evaluations.  I answered a few questions they wanted to clarify, and then they gave me the diagnosis.  The process was so fast compared to my son (that took years of evaluating, but there is more going on with the ADHD piece with that too) that I really wasn't expecting an answer today.  But when they delivered it, it was like my heart sank.  I can't even begin to express all of the emotions that went through my body.  I was sad for her, happy that I listened to my instincts, relieved that it is something that we can work on, guilt because I feel that it is my fault somehow.  Guilt, I know that I didn't cause it, but it is my genetics that have caused it.  I had contemplated whether or not to have two more kids down the road.  Well, 66.67% of my biological children are on the chances are if I had more, they would be too.  I am not saying it is a negative thing to be on the spectrum, but it takes extra time, effort, patience, and money to care for kids on the spectrum and how much time will I have to devote to all of my kids and make sure that I am meeting everyone's needs, including my own?  I am not able to answer this now but it is on my mind.

The car ride home...I took the long way.  Nice pleasant backroads.  I was able to breathe, chill, cry, without the rush of the interstate traffic.  I made some phone calls, but I lost service for a big part which I think was a good thing because it let my brain just mellow out.  Writing this, I still feel like I am in a fog.

So, today is day one.  Tomorrow is another day.  What I have learned from today will help to make tomorrow even better.

Wednesday, March 16, 2011

Something Simple That Made My Day

About a week ago I got a text from my husband.  He drops Kyle off at school in the morning.  The drop off place at school is in the lower parking lot, a little bit away from school.  The walk isn't bad at all, but on a rainy morning like it was this particular day, it seems a lot longer.

It takes a lot of effort (both on our part and on Kyle's part) to make sure that he has everything for school every day.  Things like homework, shoes, boots, snowpants, hats, gloves...the list goes on.  For the most part, we try to leave things at school so that way we don't have to worry about them.  But, sometimes things find a way back home and then we have to remember to send them back.  It doesn't sound like a big issue...but believe me, it is!  So, the one thing that we don't even bother sending, is an umbrella.  When it rains, they have indoor recess.  The only time he is outside on these rainy days is when my husband drops him off and I pick him up.  (The reason why he doesn't ride the bus is a separate story in itself)

So, back this particular rainy day...

My husband dropped him off down in the lower lot.  Poor little guy was going to have to walk all the way up in the rain.  Well, there was this girl who was headed up to school as well.  She had am umbrella.  She asked Kyle if he would like to share her umbrella.  So, they walked up to school together, sharing the umbrella.  This may not seem like a big deal, but to me it is so big.  It shows me that kids are caring.  It shows me that kids have compassion.  It shows me that there is hope for Kyle and his social relationships.  When I read the message from my husband, I cried a few tears.  Those were some of the happy tears that I have shed in this journey with Kyle.

Tuesday, March 1, 2011

The Journey and the Emotions

I have heard a common phrase that is used by parents after they learn that their child is on the spectrum. That they "mourn the loss of their child". I am not saying that this isn't the case with these parents, but it was quite different for me.

Kyle has always been the same, we never lost anything. He has Asperger's Syndrome and never lost any of his abilities, speech was never an issue. I still have huge hopes and dreams for him. I know that he can be whatever he wants to be. For him, there will just be a few more hurdles along the way.

I admit, every time I read the letter from the doctor which states his diagnosis, I can't help but cry. The tears come from a place inside that confirms something I had known since before he was three. I no longer feel that I was a bad parent. I praise myself for never giving up. There were many times giving up seemed easier. The fighter in me always won.

I knew there was something 'unique' about Kyle long before he turned three. The endless spinning in circles, running...the constant battles. ADHD crossed my mind. At his three year checkup I told his pediatrician about my concerns. He blew me off and said they wait until school to deal with that. I wanted whatever it was to be under control by school.

When he was three and a half I married my husband. My mom was at my wedding and was in charge of watching Kyle. She feels that she missed my wedding. Kyle kept taking off, running outside of the reception hall, constantly. After having two more little ones, it is clear how severe this was. (I was thinking of this day recently because I was scanning some wedding pictures on the computer)

By the time Kyle was four, things weren't getting better. The terrible twos never left. At his annual checkup I refused to leave without being referred. We were referred to one psychologist who met with all of us and performed many tests on Kyle. He was then diagnosed with moderate to severe ADHD-HI and ODD. Finally, we knew what was going on and could go from there.

Behavioral therapy, family counseling and a trial of every ADHD medication offered little relief. Along the way we switched therapists. The place we go to now is great. Shortly after working with them with the ADHD and behavioral therapy, they asked me if anyone ever mentioned Asperger's to me. I had never heard of that term before. They went on to explain what it was, and it was if they were describing my child. They wanted him to be evaluated in depth to make sure that it wasn't just severe ADHD. He received the provisional diagnosis of Asperger's in first grade. A year and a half later he received the definitive diagnosis. When I discussed this with his first grade teacher (first grade was a very rough year for him) she said she had wondered if he was.

Now, we are finishing the last leg of third grade. We still have our hurdles, battles and sensory issues. Changes in routine, transitions, impulsivity, safety and social issues are the main things we have issues with. But, along with that, we have the support of the IEP, our knowledge and acceptance of his condition, and his classmates that are more accepting of him now that they know. He also has two therapists, the best I have ever met, that work with him one on one and in small social groups. He also participates in numerous extracurricular activities that help with his social growth and also keep him active. Boy does he have a lot of energy!

How do I keep sane? I'm one tough cookie! I am just thankful that I pushed along. Never doubt your gut instinct. I also have a five year old son and a four year old daughter that are neurotypical. They act "appropriately" like neurotypical kids are "supposed" to act. That, to me, confirms that I am not a bad parent. The higher power, known to most as God, gave Kyle to me because he knew that I would do the best for him. He knows that Kyle is in the best place. My kids are my world. I love each of them for who they are.