"It's Just a Phase"...

I recently gave birth to my fourth child, Matthew, and I thank God every day for the wonderful blessings I have been given.  I consider myself lucky to have both NT (neurotypical) children, as well as a child with special needs.  I believe that this gives me a unique perspective on what it is like to raise children.  I do not, however, claim to be an expert on child-rearing; I am just grateful that I am able to experience both of these scenarios.

I have always believed, and heard from other parents, that having a special needs child teaches us many life lessons.  I know that I have certainly learned a lot from Katelyn, given her dual diagnoses of PDD-NOS (autism) and psychiatric illness (psychosis).

This morning after getting Katelyn and Ashley ready for school, I had a realization that I've known for a long time, but never knew how to make sense of it or put it into words.  It seems pretty obvious now, but it came over me like an epiphany this morning.

When a parent of a "typical" child worries about their child being addicted to their binky or not being potty-trained at age 3, etc., we often comfort them with phrases such as, "Don't worry, she will NOT be walking down the aisle with a binky in her mouth," or "No one wears diapers at their high school graduation!"  These phrases imply that there is no doubt, it is a fact, that these typical children will eventually outgrow these issues, that these are in fact normal stages in life that are certain to improve over time, and in the short term no less.  The reality that "this will not last forever" helps the parents to get through the rough time, knowing they can look forward to a brighter future where binkies and diapers are a thing of the distant past.

Here's the kicker.  When parenting a special needs child, the concept of "normal" development flies right out the window.  There is no such thing as "it is just a phase" when it comes to a special needs child.  No one can offer you the same comfort that your child will not be wearing diapers at their high school graduation, or that they will even graduate at all.  For some of our children, it is an unfortunate reality that they will never outgrow these "phases."

Given that I have 4 very young children, I find myself using these comforting phrases quite often with regards to my typical children.  Ashley, 3 years old, is at the dramatic "I'm the boss" stage, and Trevor, 2 years old, is at the screaming, tantruming stage.  What gets me through the day when Ashley and Trevor are having "difficult" days is reminding myself that "this is only a phase," and that they will soon outgrow this behavior as they continue to develop.  However, I realized that I never say that about Katelyn when she is having a difficult day, which is an everyday occurrence, some days worse than others.  

Special needs kids present a laundry list of challenges, whether it be behavior, self-care, cognitive functioning, etc., and one of the hardest things to deal with as a parent of these special children is not being able to reassure yourself, or your concerned family members and friends, that "this is just a phase."  There is no such thing as a "phase" for these children. In some cases, it is obvious that the child will never be able to function independently, toilet-train, live on their own, etc.  In other cases, like ours with Katelyn having psychiatric issues involving psychosis, there is a huge question mark, a big unknown about what her future will hold for her.  Will she live independently?  Will she marry and have children?  Will she be able to attend regular public school one day and graduate?  Who knows.  In either case, I believe it is the lack of being able to reassure oneself that these day-to-day challenges are simply a phase, a stage, something that will eventually dissipate and life will be easier some day.  

Again, being a mom of both special needs and typical children, I can appreciate both sides of the coin.  I know what it is like to be able to tell myself this is only temporary, life will get easier, the kids will outgrow this, and I also know what it is like to have to face the reality that some things will never change and could even get harder in the future.  

I felt the need to share my realization, not to depress the parents of special needs children or to make parents of typical children feel pity, but to put into words what sometimes is hard to understand, even when you are living it day after day.  I hope this post is helpful to others.  It has been helpful for me to write it.

Right Back Where We Started From...

It has been quite a while since I last posted and a lot has happened since (including the birth of our baby boy, Trevor Kyle, in January!)

In December, Katelyn had a bout of pneumonia and it really set her back. Up until then, she had been really progressing well. However, being very sick for over a week, coupled with then being out of school for winter recess, she really regressed in terms of her behavior and willingness to do things independently. Her control issues also escalated and she became even more demanding than before.

After doing some research and talking with other parents of children with autism, we decided to try a course of Nystatin since she was on amoxicillin for the pneumonia and antibiotics often can cause an overgrowth of yeast in the body, especially in children with autism. We have yet to see any improvement. In fact, as time goes on, her behavior has been getting far worse, both at home and now at school.

We are now suspecting that something else is going on in addition to her autism that is causing her to behave this way. Her teacher and therapists have never encountered a child like Katelyn and they are as baffled as we are. We have tossed around the idea that perhaps it is obsessive-compulsive disorder (OCD) or even depression that is causing her to be so demanding and controlling, but now we are leaning more towards oppositional defiant disorder (ODD). I had heard of ODD way back when I first read about autism, but at the time I did not feel that Katelyn fit that profile whatsoever. Now, however, she seems to fit it to a tee.


Here is a brief description of oppositional defiant disorder:

In children with Oppositional Defiant Disorder (ODD), there is an ongoing pattern of uncooperative, defiant, and hostile behavior toward authority figures that seriously interferes with the youngster’s day to day functioning. Symptoms of ODD may include:

• Frequent temper tantrums
• Excessive arguing with adults
• Often questioning rules
• Active defiance and refusal to comply with adult requests and rules
• Deliberate attempts to annoy or upset people
• Blaming others for his or her mistakes or misbehavior
• Often being touchy or easily annoyed by others
• Frequent anger and resentment
• Mean and hateful talking when upset
• Spiteful attitude and revenge seeking

We have been seeing an increase in aggression both towards herself and to others, especially to her sister, Ashley. Thank God she has not directed any of this towards Trevor, but I worry that it is only a matter of time before the novelty wears off. She is also starting to hit other children at school without any reason other than the fact that they walked by her. She has been increasingly demanding and controlling, and she deliberately seeks to annoy or upset others, especially me unfortunately, probably because I am the main disciplinarian since I am with her the most. She will purposely defy us, even if it means forfeiting privileges that she earned, and begged for, moments earlier. If we say yes, she says no. If we say no, she says yes. Every single aspect of our lives with Katelyn has become a constant battleground. She cuts off her nose to spite her face.

Because this is interfering with her at school and at home, we have decided to pursue psychiatric evaluation for Katelyn. Our first step is going to be getting her re-evaluated by the same doctor who diagnosed her autism. This will take place in March and we will get the results of the evaluation mid-April. We also put her name on a waiting list for a local center specializing in children's behavioral health, but they said that we will most likely not hear from them for at least two months to book an evaluation.

So now the waiting begins once again...the not knowing...the hoping that getting a diagnosis will offer some sort of help for our child and our family as a whole. We are right back where we started from when we first began this journey back in 2008, but this time it feels much different to me.

When receiving the diagnosis of autism, I threw myself into advocating for my child and learning as much as I could about autism, but this is really affecting me to my core. I cannot express how difficult it is to deal with the fact that your child may have a disorder that causes her to want to purposely upset you, or that creates such turmoil inside of her that she no longer enjoys things that she used to because she is in a constant battle within herself. I am often reminded of the nursery rhyme line: "And when she was good, she was very, very good, but when she was bad, she was horrid." And what makes it worse is that I know in my heart that this is NOT my child...this is not who she was just a few short months ago. And I will do everything in my power to ensure that this is not who she will be forever.