"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.

Sensory Overload...

When we first started to suspect that Katelyn had autism, we didn't really think that she had sensory issues. However, all of a sudden it has become very apparent that she definitely has a lot of sensory needs. She becomes overstimulated and will get herself all worked up and then crash hard. She will go from being hyper, laughing and talking a mile a minute, and then all of a sudden she will start crying out of nowhere.

It is very common for kids (and adults) with autism to have difficulty regulating their sensory needs and emotions. A lot of these sensory issues can come about due to environmental factors, such as loud noise or bright lights, but the cause is not always obvious. We are still trying to figure out the triggers for some of Katelyn's behaviors and sensory needs.

There are many ways in which to help a person with autism regulate themselves. For instance, sometimes deep pressure helps, which is the case for Katelyn. She likes hard squeezes and squishes, and to be thrown into the couch or covered in pillows and blankets. For this reason, we have implemented a weighted vest, which helps her to remain calm and focused. We have also ordered a weighted blanket, which is supposed to help with this as well. Katelyn also craves activities such as swinging, jumping on the mini trampoline, bouncing on a large exercise ball, and playing with Play-Doh and beans.

Last Thursday, I began implementing a brushing program to help with Katelyn's sensory regulation. It involves brushing her arms, back, and legs every 2 hours with a special brush, and then following this with joint compressions. So far, it seems to be working wonders! Last week, she was having frequent meltdowns and was unable to focus on her therapy, but this week, she has been doing great! She is sitting at the table and attending once again and is remaining much calmer throughout the day. I also believe that it could have to do with the fact that she is now getting used to her much more demanding schedule.

With autism comes many challenges, only one of which is sensory needs, but by educating ourselves and being willing to try new and different methods, we will find what works for Katelyn.

I Finally Have My Girl Back...

For the past few months, Katelyn seemed to be slipping away. She would no longer feed herself independently, watch her favorite TV shows, play with her toys, walk up and down stairs, etc. She even stopped singing and clapping. Overall, she seemed very unhappy, as if she was locked inside herself and couldn't break out. But with some help, Katelyn has returned.

Since it wasn't clear if she wouldn't, or simply couldn't, do certain things that she used to do, we were not exactly sure how to handle the situation. If she truly could not do these things, it would not be fair to her for us to try to force her to do so. However, if she was just choosing not to do certain things, this would be a behavior issue that could be corrected.

Exactly one week ago, I decided it was time to try to break Katelyn free, if possible. For some reason, she would no longer enter our kitchen for the past few months, so I decided to start there. I also wanted to tackle the self-feeding issue since she was only eating if I shoved the food into her mouth. I already have an 8-month-old who cannot self-feed, so as you can imagine, having to feed my 2.5-year-old as well was time-consuming and exhausting.

So I picked Katelyn up and brought her into the middle of the kitchen. She was not happy, but she lied down on the floor. I got out one of her favorite snacks and put them in a bowl. She really wanted the snack, but she got very upset that I refused to put them in her mouth for her. I held the bowl and told her that she needed to take them out herself. She began to cry and protest, hoping that I would give in. However, after enough time went by, she finally took one out and shoved it in her mouth reluctantly. It was like a battle of wills, not against me, but against herself. I praised her a ton and then I put the bowl down on the floor, no longer holding it for her. Once again, after some tantruming, she finally took one out of the bowl. Again, more praise. All in all, it took an hour and a half to get her to successfully feed herself, but it was worth every minute. This was a huge breakthrough!

I then decided to see if she would feed herself at the coffee table, since she had been refusing to even go near it for months. I put the bowl on the table and turned on Blue's Clues. With some prompting and reassurance, she finally went over to the table and fed herself. I praised and praised her. She became very excited to receive the praise. I could see the pride that she felt. It was then that I knew that she was not incapable of doing things that she once did, she just lacked the confidence. It was like she just got stuck in a rut and didn't know how to get out, but I opened up the door for her. Finally, my happy girl was back!

As if a magic switch had been turned on, Katelyn quickly resumed to many of her old activities. She now walks up and down the stairs completely independently, feeds herself (she even used a fork and spoon tonight and she did well!), doesn't require Mama and Dada to be in the same room with her all of the time, and she even has been incredibly sweet with her baby sister. She is constantly laughing and smiling, and you can just see the difference in her. Also, her language has just exploded and she is actually starting to form sentences! And to think, just a few months ago, we weren't sure if she would ever say more than one- or two-word phrases.

Also, her ABA therapy started last week and Katelyn is doing amazingly well. She already has a bond with her ABA therapist, Aimee, and she is enjoying the one-on-one sessions. And now that she has the language skills, we are able to see just how smart she truly is. She continues to amaze me every day.

Katelyn has taught me many things in her short life so far, but one of the most important lessons that I have learned is to cherish the small accomplishments and never take anything for granted. When you have a child with autism or developmental delays, you really hold onto the little successes, and if and when your autistic child reaches the "normal" milestones, even if it takes months or years longer than other children, it is truly euphoric. It is almost like witnessing a miracle because it isn't definite that your autistic child will ever do some of the things that other children do naturally. After witnessing, and being a part of, Katelyn's recent breakthrough, I feel on top of the world. I finally have my girl back, and I am never letting her go.

Bad Day at the Office...

Yesterday was Ashey's 6-month doctor visit. I didn't expect there to be a problem since the appointment was for Ashley and not for Katelyn. Boy, was I wrong!

Katelyn started out okay for the first few minutes, but then she saw a man sitting in the waiting room and said, "Hi Dada." He laughed and I explained that she calls all men "Dada." Well, then she proceeds to run to him saying, "Dada!!!!!" I go get her before she leaps on him and at first she is laughing. Then she goes into a fit of RAGE! She started screaming at the top of her lungs -- I thought the windows were going to crack! She was flailing, kicking, punching, screaming "Dada!!!!!!!!!!!!!!!" and she even resorted to biting and clawing me. I was holding both of her arms so tight and she was fighting me, which was so hard. She kept screaming for Dada, but I was trying to explain to her that it wasn't Dada. He didn't even look like him! The man felt awful.

This went on for over a half hour, with the entire waiting room just looking in disbelief. I almost lost my mind. I told myself I had to keep calm because if I lost it in public, it would do no good for anyone. Finally, they called Ashley's name. I was about to go to the window and see if they would please take her sooner since Katelyn was having the worse meltdown she EVER had, and in public.

It felt awful to have her go through this, and it was certainly embarrassing to me since it happened in public, although at the time I tried really hard to ignore all of the stares. The worst part of all was that I realized that this was only the beginning -- there will most likely be MANY more days like this, and many more stares to ignore. That makes me so sad, not for me, but for Katelyn. Hopefully once she gets her diagnosis, we can proceed with therapies to help her (and me) in these situations.

Needless to say, I will never take the 2 girls to the doctor's office by myself again :)

Oh, No. It's Santa.

Because I obviously have a need to be in a constant state of stress, I decided to take the kiddos to get their picture taken with Santa. For the last 2 years, Katelyn never had a problem with Santa. In fact, she was always intrigued by his soft beard, fuzzy outfit, etc. Well, given her reaction to getting her photos done recently, I expected that this year would be different.

Katelyn was very excited about all of the lights and the Christmas tree. She even enjoyed meeting Santa and checking out all of the presents near his oversized green chair. But when it came time to actually take the picture (i.e. Mama leaving the scene), that was when all Hell broke loose. Katelyn begged for me to stay with her while I tried to convince her to sit nicely for the picture (yes, I'm trying to reason with a 2-year-old). Not only did Katelyn get upset, but Ashley started crying as well. Great, now even the baby who never cries is crying!

With Ashley screaming and Katelyn running away from Santa, the photographer interjected some reality: "I don't think this picture is going to happen, Mom." However, I was not leaving without getting a picture of my girls with Santa. It is a tradition, afterall! Since it was clear that both girls were not going to sit pretty for Santa like I had hoped, I decided to go with plan B...Mama will have to be in the picture as well, sans make-up, sans shower, clashing outfit and all. I really wish the mall Santa photographers had access to Photoshop. Not to mention, Santa looks thrilled :)

Although it is definitely not what I had hoped for, at least I got my picture of the girls with Santa (and, unfortunately, me). I'm sure I will look back on this and laugh, and most of all, be grateful for the silly memory.

Zoning Out for the Holidays (photos, that is)...

Yesterday my grandmother and I took Katelyn and her baby sister, Ashley, for their holiday photo session. It was also Ashley's 6-month picture (she will be 6 months old at the end of the month). It certainly was an interesting experience.

I had been a little worried about how Katelyn would react because she was NOT happy at her 2-year photo session, although she had never had an issue before. I fully expected the blood-curdling screaming and crying and I was anticipating walking away without photos of my beautiful little girl. However, what happened next was unexpected and quite interesting to witness.

When we first approached the photo area, she began screaming and crying and clinging to me like a koala bear. She did NOT want to sit for the picture, even though her baby sister was perched happily (as usual) on the stage and smiling at her. Katelyn was repeating, "Mama, bye bye, Nana," desperately resisting to pose for the pictures. I then took out her beloved Giraffe and asked them to take his picture so that Katelyn could see him on the screen. She still cried, but she was interested in looking at Giraffe on TV.

Then all of a sudden, it was like someone flipped a switch. She stopped crying and just zoned out. It was like she went into her own little world. She was no longer scared, it seemed. However, she was so zoned out that it seemed that she was no longer aware of her surroundings, which made it virtually impossible to get her to look at the camera or smile. She did not respond when the photographer was clapping, banging, singing, shouting, squeaking toys, etc., except that she would occasionally repeat what they would say or she would start saying random words, "Wow, Mama, up, clock, ding, ding, ding." She also would immediately yell, "Mama!" if I tried to get up since I was sitting right next to her. That was the only thing that she seemed to notice.

Now, I have witnessed Katelyn zoning out and staring off into space before, but this was the first time that I saw her go from one state to the other. It was just as if someone had flicked a switch and off she went.

Needless to say, there are no pictures of Katelyn smiling, but that is perfectly fine with me because the pictures that we got capture the essence of Katelyn beautifully. I always tell the photographer not to focus on getting her to smile because she hardly ever does for pictures, and that is fine with me because she smiles and laughs off camera all of the time, and that is all that matters to me.