Sunday, July 22, 2012

And then the storm hits....

         I promised myself when starting this blog that I would be honest with myself, even when I want to put a happy spin on things and this will be my first of I am sure, many difficult posts to make.

        What can I say? I had this picture that everything was getting better and then it hit, the storm. This weekend has left me tired, emotional, upset, disappointed, sad, and full of questions. This past week was wonderful for us, our sons anti-anxiety medication made him branch out like we have never seen. We were excited to see him so out-going even if his behavior was odd. The Asperger’s had introduced itself to us with little warning but we were working with it.

        Then it happened. It was as if in a flash everything changed. This weekend has been horrible. There, I said it. It has left me so upset and disappointed that I haven’t slept and am on edge. My son, who just last week was being more loving than I had ever seen him, is now mouthing off, saying mean things like he doesn’t care how it makes me feel. He flat out called me a liar, and has been hitting his sister. I cannot even begin to explain how the past two days have gone, but I can assure you it has been very upsetting for everyone. I knew this was coming, but was praying that it didn't, the medication has leveled out and now the we are seeing what Aspergers really means.

     My heart is aching, more for my son than anyone else, what is his life going to be like? Will he have friends? A partner in life? For the first time, I am scared for my son. I am fearful of the challenges that lie ahead of him.  

I love my son more than anything, he is my light in this dark world. I am so angry that he will face challenges for the rest of his life. I would give anything make it better for him.

I have been praying more than ever for the ability to handle this situation with grace. This morning at church, I just cried. I know there is reason for my sons Aspergers, I just wish that I had the ability to see and understand it. I can feel God speaking to my heart, telling me to calm down, or take a deep breath at times and I do my best to obey but it is so hard when your heart is aching and you don't understand.

 I feel so defeated right now, but I know that better days lie ahead for my family. They have to.... because my God is good. 

Thank you to those who sent emails offering support. Some of you I have never met, but I will say that you are near to my heart. To have strangers offering such compassion is nothing short of a blessing.  

To those who are uneducated about Aspergers or the Spectrum I ask that you take 5 minutes out of your day to do some reading. That child throwing a fit in the store, or refusing to eat at the restaurant because it is too loud, or the child who at 7 constantly has his hands or his shirt in his mouth, just might be on the spectrum and are not just "brats" that need punishment. I was one of those moms that looked at parents with "out of control" children and rolled my eyes. I wish someone would have encouraged me to get educated before passing judgment.  

Goodnight my friends. 


“I can do everything through him who gives me strength” (Philippians 4:13)

Sunday, July 15, 2012

Day 9, and it gets better

It has been exactly 9 days since our boy was diagnosed. In these 9 days I will say that our lives have never been so different. I mean this in the most positive way possible. Since reading about how to handle difficult situations with our boy, and relate to him on his level both my husband and I have received more hugs than we can ever remember getting. Sadly before his diagnosis, I can count the times my son has voluntarily hugged  me on two hands. Sad, incredibly but this week has made both my husbands heart and mine soar. We both agree that our boy being diagnosed was the greatest gift God could have given us, it came with answers and knowledge. As a result our boy is happier and expressing himself more than he ever has. Let me get more into that....

Our son is loud, out spoken, and very comical at times. Since starting his medication we have seen much, much more of the Aspie side of our boy. But really we both figure as long as he is happy, we can handle the stares in public because really our boy is special and we could care less what anyone thinks.

I wanted to take a couple minutes to answer a few of the common questions we have been getting.

Will you cater your life to his every need? (because he does not handle routine changes very well)

The short answer is yes, we will cater our lives to our son, just like most parents cater to lives to their children after they have them. Will we challenge him at times to step out of his comfort zone? Absolutely, but this will be done in the future after we have all had time to get used to our new life. When you have a child that needs are different than yours, we as parents show compassion and handle it with ease. We do not ever want to put our boy into a situation that makes him regress. Of course this may happen at times, we will do our best to handle every situation with grace for our son. The metaphor that I use is, would it be fair if I got you on a plane and then when we hit our elevation told you that we were now going to be jumping out. Would that cause severe anxiety in you? Of course, it would be mean, and it would cause great stress for you. We would like to lessen the stress and anxiety for our boy as much as we can. This means planning out our days as much as possible and this might even mean that we have to pass on some events but really, big deal.

It looks like you are letting him get away with everything without punishment, will you ever punish him?
Of course we will! However, it may not be the same punishment that a child without Aspergers would receive. This is challenging in our home due to having one child that is a Apie and one that is not. But the reality is that our guys brain is wired different than our little girls, and he deserves understanding when it comes to punishment just as our little girl does. Because our boy does not understand why the words he speaks are rude, and will never understand why those words hurt others feelings. I cannot and will not impose a punishment that does not fit the crime. How can I punish my son for something that he does not understand? Instead he will take a time out that ends with a conversation from mom or dad or both about how that makes the other person feel. Again he will not truly get the emotions part but we feel that it is important to make him at least aware of how he made some one feel.

What are our plans for Our Boy?
Our plans for our boy were the same they were before he received the diagnosis. We plan on continuing to raise our boy to be a compassionate, humble, charitable, faithful, spiritual, follower of Christ. (I will get more into this later, but I will say that without our faith I don't know where we would be!) Our dreams for our boy have not changed in the least, in fact we now have even more hopes for our son. We both pray that he becomes a voice for all the other Aspies out there.

Really, my husband and I are both so relieved, our home has been so pleasant to be in. I will admit that there were many times that I wanted to go to work on the weekends because the anxiety and constant conflict and battles with my son became exhausting and my depression was so high. But now, I am so excited to come home and see the advances that our boy is making. Hannah is having a little bit of trouble understanding why our boy is acting so different but my husband and I plan on sitting her down and having a talk with her about it tonight, wish us luck!

Again, thank you for the out pouring of support we have received, the texts, and emails and just asking how we are doing is an example of the kind of friends and family we have. We love you all.


Sunday, July 8, 2012

The Signs that We Missed

I just had a conversation with another friend who has a child on the Spectrum. We were talking about the signs that we missed with our boys. (Bless her heart, she has been such a incredible outlet for me, I am blessed to have her as a friend)

I guess the first one was that as a infant, my boy did not like to be cuddled. Forget trying to swaddle him, that always resulted in screaming and crying. He was more content to lay on a blanket in the middle of the room and just look around. I assumed he was just a curious baby.

Avoiding eye contact, this has been going on for as long as I can remember. I figured my child was just shy.

His fixation on subjects, for the past three years it has been sharks. This is not just a interest but a obsession. In fact he could probably tell you every fact about any kind of shark.

His ability to memorize things in incredible time. He can look at his spelling test words once and he has them memorized. We make him practice them still and I can see the boredom in him.

He is incredibly intelligent but struggles to voice it, he can write it but struggles deeply with conveying information verbally.

Emotionally he is not aware when he has been what society considers "rude" or inconsiderate. It does not occur to him that he is acting out of the socially accepted norm. He says things that we are all thinking but hold back from saying as to not offend anyone. Basically my boy has no filter.

Plans, I started thinking about this last night. During the week it seems that he does pretty well, he knows the plan. But on weekends when we take a unplanned trip to Colorado his behavior is horrible. I now understand that children with Aspergers and the majority of children on the Spectrum have a hard time doing things that are not planned or in their normal routine. This is something that we will be working on. I get that we cannot just get in the car on a whim anymore. Everything in our life must be planned and he needs to be aware so that we do not increase his anxiety.

I have heard so many times that he seems "normal" (hate that word) when he is around other kids. I hear this from his school as well. What I have learned is that this is one of the biggest irritation for parents of a child with Aspergers. It is extremely common for a child to not show any of the signs of Aspergers at school. I think this goes back to the whole planning and routine.

Loud noises, bright lights, textures. This one is also very common with children with Aspergers, many children who have Aspergers also have Sensory Processing Disorder which our boy was diagnosed with a little over a year ago. He does not like loud noises, bright lights, and many textures of food. The psychiatrist said most parents shoot for all the food groups in a day, we should be happy if we meet the four food groups in a week. Cue, multi-vitamin.

Routines, like plans are crucial for our son. First thing in the morning he has to change out of his PJ's. He doesn't even come upstairs until he is dressed. I have asked him to try and stay in his jammies until after breakfast but he cannot do it. We will work on it.

Boys will be boys, well not mine. My son does not like rough play at all. He does not like other children touching him at all. He is more content to find a friend and sit next to them and read. He does not know how to respond to a child that is trying to have any kind of physical contact.

These are just a few of the signs that we have notice in our boy. As you can see he just a different child, but I love him with all my heart.

I wanted to add something that has given me so much hope and strength. 

              "I am going to put out in the universe--- One day Jer will be the poster child for this condition. He will speak to other children, parents and families about his experiences. He will move people with his words and his empathy for those with "unseen" conditions will carry him farther than any doctor, psychiatrist, or specialist ever imagined. He will do great things and this will never be a crutch, this is what makes him even more special to us and to our world." Angie-my sister

I truly believe this in my heart, in fact every time I read it my eyes tear up. The above statement is true. It means so much to have the support that we do. My children are incredibly blessed to have such wonderful people in their lives.  

Saturday, July 7, 2012

What is Aspergers?

Trurth be told, I have so many questions about what Aspergers really is that I am bit overwhelemd. I understand the basics but what I do not understand is what this means for my Aspie boy in his future. The unknown is really scary sometimes, this would be one of the times.  With that being said I have decided to dive in and gather as much information as I can about Aspergers.

First the Criteria for Aspergers:

DSM IV Diagnosis:

Diagnostic Criteria for 299.80 Asperger's Disorder

[The following is from Diagnostic and Statistical Manual of Mental Disorders: DSM IV]
(I) Qualitative impairment in social interaction, as manifested by at least two of the following:
    (A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
    (B) failure to develop peer relationships appropriate to developmental level
    (C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
    (D) lack of social or emotional reciprocity
(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
    (A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
    (B) apparently inflexible adherence to specific, nonfunctional routines or rituals
    (C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
    (D) persistent preoccupation with parts of objects

(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.

(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)

(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.

(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia."

* As the psychiatrist was going over this with me, and told me that my child only needed to fit in some of these catagories, she reaveled and I agreed that he fits in every single one.  Looking at my child you would not know that anything different was going on in his head, but those who have spent a great deal of time with him will agree that our little guy fits exactly in the above diagnosis.

Our little guy was also diagnosed with sever anxiety and depression, this is very common in children with Aspergers. He was started on some medications yesterday to help with these issues but the fact is, this will likely be something that he will struggle with for the rest of his life. My sister and I cried about this yesterday, we both suffer from anxiety disorders and know how difficult it can be at times, to know that my son/ her nephew will experience it is very emotionally challenging to accept. However, I trust in God that He has a plan that right now we may just not be able to understand.

I received a email yesterday form his pediatrican, who by the way is the best doctor I have EVER had the pleasure of having in my childrens life. She was able to skip over a 6 month wait to get us in with the Pysch and then called me several times after the appointment to see how we were all doing. Anyway, she emailed me over a list of resources that I am checking into, books, websites, and support groups. We also were informed that our Aspie boy will qualify for special assistance through the Federal government if he so needs it.

Finally, I just want to clear something up. Please do not pity my son or our family. We do not need it, we are proud of our son, proud of his Aspergers and feel incredible blessed that God has the faith that we as a family can and will make it through this and even more that we will embrace it. The sadness will not help anything and really what is there to be sad about? My child is special but then again he, just like my daughter will always be special :)

Friday, July 6, 2012

Today marks a new beginning....

Well we finally have our answer, an answer that we have been seeking for years now.

Our son has Aspergers.

Writing it down is easier than saying it out loud although I think I knew it this whole time. I knew my child was different, I knew that he had "quirks" and I knew that he was emotionally unavailable most of the time. We had been told our son had autism, but we have never received the 100 percent for sure diagnosis. 

Today after hours with the psychiatrist we received the diagnosis that I in my heart,  had been waiting for years to hear. I suppose to many it is crazy to sound relieved, but I am. I left the office and cried, tears of joy, we finally have a answer and working together we will be able to get our family back on track.

Explaining to people why your child is acting out all the time is so difficult especially when you the parent are not sure why they are behaving the way they are. Now I know, now we all know.

Our child is different.

My child is gifted, incredibly intelligent, (in fact he will goes in for his IQ test next month, can't wait to find out!) He is reserved, socially awkward at times, he is not very good at reading others emotions but really these are just things that we will have to work on.

I have guilt in my heart for not pushing the doctors more to get us definite answers, I wish I would have stepped up more and used my voice. I feel as though I let him down for so long. I will never do that again.

So there you have it, the beginning of our incredible journey with our Aspie boy.

I have decided to document everything that we go through, the ups, downs and the in between. I want to be able to reflect on everything that we go through, it may not always be pretty but it will be real. 

With love,

Stephenie and Ben