Sunday, September 18, 2011

The Verdict

Well after fighting and begging and dragging poor W to countless doctors and therapists, we finally have a diagnosis. Autism. Isn't his what I wanted? For someone to see what I see and label it so I can get him help? Yes and No. It is so hard to explain. I have known for years that there is a problem, a big problem. I have also spent years trying to get someone, anyone, to see what I see. To spend a little time with W, he is a delight. He is chatty and quirky and funny. So many have told me I am crazy and that he is fine, but he is so not fine. He has many struggles that no one sees but Wade and I. Believe me I would have given my right arm for him to be fine and just quirky.

On the one hand, I feel like a huge weight has been lifted off of my shoulders. The weight of trying to find acknowledgement of a problem and the proper testing. There is something seriously wrong with our system if a parent has to struggle so to get her/his child help and the insane cost of therapy is robbery.

On the other hand, I feel like we have opened a can of worms, so to speak, and it is all just beginning for W. I know he is high functioning and believe me I am so grateful for that and I know that there are children so much worse off but that does not lesson our pain of having a special needs child. We all want our kids to be perfect without a care in the world, right??

So I type this uncharacteristically serious post to say that I have my diagnosis for W, FINALLY, and it does not provide me with as much closure as I had hoped. It has left me sort of empty and sad for a bit. It was much harder to hear than I anticipated even though I knew in my heart what they were going to say. BUT---- I will remember where sweet W started and how far he has come and how strong he is. His fortitude will see him thru and he will be fine. He will continue to plug along in therapy and school and amaze us all and who knows? He may become the next Bill Gates!!

Saturday, July 16, 2011

A Typical Morning Around Here...

A friend of mine(THANK YOU SueMac!) recently did a video of a day in her life and I thought that was such a clever idea. However, there is no way I could accomplish this. There is no way I could get W everywhere and man a camera so I thought I would just log a written account of an audio day for you. All commentary is W speaking except when specified as someone else. So here goes:

2:58AM-Good morning Mama! Can I watch TV?

3:05 AM-Can I watch TV?

3:20 AM-Can I watch TV?

3:30AM-Falls back to sleep thank you LORD!!!

6:00AM-(Teen) Mom where is the Tylenol?

6:30AM-(Skittles) Paw scratching my face (Dog translation-I have to go outside!!!)

7:00AM-(Wade) Hi honey I am home! (Husband home from business trip)

7:05AM-I am hungry, let's go downstairs

7:06AM-(Teen again)Mom the cinnamon rolls say bake for 13-15 minutes. How long do I bake them? (Really?)

7:10AM-Mom will you play on the Wii with me?

7:15AM-Mom will you play on the Wii with me?

7:20AM-Mom will you play on the Wii with me?

7:25AM-Mom will you play on the Wii with me?

7:30AM-I am hungry but I don't want cinnamon rolls. Will you play on the Wii with me?

7:35AM-No I do not want any of the 25 things you have offered me for breakfast. I want Burger King so I can have the Transformer toy I just saw on TV. Can we go there? Crying ensues.

7:40AM-Mom will you play on the Wii with me?

7:45AM-Mom C ate all the cinnamon rolls!

7:46AM Mom will you play on the Wii with me?

7:50AM-I am hungry!

8:00AM-I am tired. I am going to go lie down.

8:01AM-Mom will you play on the Wii with me?

I will spare you the rest but you get an idea of a typical morning and you can just imagine how much fun living with an OCD child is for the rest of the day!! It is never a dull moment that is for sure! And I have learned to sleep in 5 minute intervals. We just take it for what it is and most of the time just go on but I am not saying that sometimes I don't loose it with the repeating. But in our family we try to see the funny in things. Some things you can either laugh at it or cry. And we would sure rather be laughing so I hope you can see the funny in this as well.

Sidebar: W just asked me if bad ass is a bad word! Wonder what teen he heard that from????? It is going to be a looonnnggg day.

Tuesday, July 12, 2011

To Retain or not to retain...THAT is the question

Well the time has come for me to eat crow! At the end of the school year, W's teacher, who I do not think did a good job, but that is another entry, told me that she thought I should retain W in kindergarten for another year. Not my baby!!! He is brilliant!

Then the new counselor who has never laid one eyeball on my child called me on the phone and said that according to my chart I was "undecided" about retention for next year. Well any of you that know me can imagine how that flew all over me. "I am not undecided about anything," I told her. "I am quite clear on all the facts." Then I proceeded to write letters voicing my displeasure over the schools lack of efforts on my child's part and his getting kicked out of his IEP and yadda yadda yadda.

So I hired tutors to teach W to read and write this summer and get him ready for first grade. Tutors who know W like a book and who I trust completely. They sat me down last week and recommended that I indeed need to retain W another year in kindergarten. That in spite of all our efforts, he is just not ready. I should continue to pursue my quest for a new IEP and hand pick his teacher with the aid of the principal and counselor. UGH now I have to call that ding dong counselor and eat crow! What I do for my kids!!

Oh well, the pitfalls of being passionate about stuff, right? Sometimes you have to eat crow. But the other times? You get er done!!!

Sunday, July 3, 2011

Another disaster (I mean doctor) appointment.

Well I am trying to figure out a way to describe what happened at W's doctor appointment in a positive light. But I cannot think of any. It was truly an event that I could never accurately portray and even if I could, you would never believe it. The hardest part of the whole thing is to get people to understand that we are not dealing with a rational thinking child. He is an anxiety ridden ball of OCD and language barriers that make it impossible to reason with or negotiate with him. I tried to explain this to the nurse as she was getting ready to do "lab work" and she said oh I know. My son is just like that. That told me right there that she had no friggin clue what was about to happen- that the next few minutes would play out like a scene from Rosemary's Baby.

As soon as the word blood work was mentioned, W bolted for the door. The fight began as W went into complete survival mode-fight or flight. I will spare you all the gory details but in the end, the room looked like we had slaughtered a pig in there and W left with 2 blown veins, the nurse was bandaged, everyone had blood on their clothes, and no blood work was achieved. We hung our heads in shame and slunk to the car.

Let me back up a minute. Before the massacre started, the doctor tells me they want to admit W to the hospital for 24 hours and insert a tube in his nose and down his esophagus to be left there for a day to measure his pH levels. OK people, W will never cooperate enough for this to happen. My concerns, as usual, were dismissed as those of a neurotic mother who is overprotective. After the massacre, I think they finally see what I was talking about.

We left the doctor's office and Wade and I sat in the car in silence for several minutes not knowing what to do or say. Finally, Wade broke the silence and said, "There is no way he will allow them to put a tube down his nose. It is not worth the trauma to him." Hallelujah!!! The voice of reason! We are thankfully on the same page and I will be calling the doctor on Tuesday to cancel procedure. The doctor's office will be doing the happy dance after my call I am sure!!!

Sunday, June 12, 2011

The dentist

I will start this entry by telling you that a few weeks ago I noticed something in W's mouth that I thought was food and after scrubbing his teeth realized that it was his permanent teeth growing in behind the baby teeth. Shortly after that, I took Shark Boy to the dentist and we agreed that the two bottom baby teeth would need to be pulled. Oh dear Lord help me!!! W can barely survive a teeth cleaning and we have to do that with a regular toothbrush because the electric one freaks him out. So the wonderful dentist suggested I give him a Valium 30 minutes before the appointment and that plus the happy gas should knock him into another world.

Now, I knew that this idea would not go as planned but I did not know what would happen. So Thursday morning rolls around and we give W the Valium and we wait. We get in the car and W gets steadily louder and more hyper and squirmier and LOUDER and LOUDER and I am having a come apart in my mind thinking, "THIS IS NOT WORKING!!" We get to the dentist and they say are you sure you gave it to him? Well not to worry the happy gas will knock him out. NOT! He was like a pinball machine ball bouncing off of the walls and it got worse with every moment! The dentist said he had never seen anything like it!

Well fortunately our dentist is the best thing ever and he acted as silly as W, which W loved and they managed to "dance his teeth" right out of his head. It was a miracle. Then the dentist says to me---are you ready? "Now that Valium is time released so he will be in and out all day." Yes, in and out of insanity!!! He got crazier and crazier and finally crashed about 10:30 that night. Never slept a wink and I don't think he sat down either!

Another day in my crazy world of unpredictable happenings. As usual, when I told them that he would not react normally to Valium I was dismissed as I did not know what I was talking about. I guess that is my cross to bear in every situation because you know-- I AM ONLY HIS MOTHER!!

Sunday, May 29, 2011

Elephants, Elephants, Elephants...Oh My!

We decided to venture to the zoo on Saturday with my nephew and their Mimi. W wanted to see the new elephant exhibit and we talked about it and he
was excited about it. We picked everyone up and headed to Chick-fil-a at W's request. When we sat down with our food, W announced that the nuggets tasted funny and he was not going to eat them. This should have been a big red flag to me as to how the rest of the day would go!!! But in my denial, we finished lunch and headed on our way to the zoo.

Now the Birmingham Zoo has lots of new things to do and we were excited to see them but W had a different plan. "I want to see the elephants." was his chant. I explained to him that we were going to see them and as we made our way to the elephants there were all these interesting things along the way. But W was on mission to get to those stupid elephants. We went in the reptile house and W kept saying "Let's go, let's go." We tried to see the sea lions do tricks but W said, "Let's go to the elephants." Nephew loves birds and they had a bird sanctuary that you can go in and feed them and let them land on you. W would need a Valium to go in there so I suggested we go watch them feed the alligator a rabbit as was announced on the intercom. But no, he wanted to see the elephants. So we sat on a bench and whined while waiting for nephew and the birds.

Now I am completely annoyed by this point and asking myself at the same time why I would expect anything different. This is no surprise that he is so obsessed with one thing. So we FINALLY get to the elephant and he looks at one of them for about a minute and says, "Let's go." WHAT!!!! All we have heard is elephant, elephant, elephant and now he is not interested??!? I almost lost my stuff at this revelation!

So after regrouping, we decide that W wants to see the butterflies (really?? that is what you want to see for your $14.00??) so W and I head to the butterflies
while Mimi and nephew go see some more animals. Do you think I can get to the stupid, I mean lovely butterflies??? NO! Every route on the map is blocked so after walking for 20 minutes W says forget the butterflies let's go to the water fun area. GREAT!

We meet up at the water area and get swimsuits on and they decide they want to go to the bubbles. Need a token! Mimi buys them a token and of course W will not put one toe in there as expected. He will not go in the water area because the ground is hot and doesn't feel right so he says, "Let's go home." I am SO glad I hauled this beach bag all over the zoo so you can NOT go in the water!! As we are leaving by route of the gift shop, Mimi asks Will if he had a good time. He says, "YES!!" I guess in his own warped way he had fun so why am I still annoyed that he did not have the kind of typical fun that I want him to have? Something that I am still working on--changing my expectations for him and pure acceptance of his quirky little self.

Next time we are going to just go sit on the porch and wait for a butterfly...

Tuesday, May 24, 2011

Visit with the "Talking Doctor"

This is what W calls the doctors in the neurological field. We had our first visit with the new shrink yesterday morning. The last psychologist we had took a very keen interest in trying to council me instead of W. She would ask that I come by myself and not even bring W! She would suggest idiotic things that told me instantly that she did not have children. She would say, “I want you to go into your room each day for 30 minutes and lock the door and read or meditate to regroup.” Lady are YOU crazy??? Do you know what W could do in 30 minutes a day of unsupervised play??? She did not seem to grasp that there is no one but me to take care of W. I don’t have people sitting around so I can “meditate”. Get real lady. W could get to Bessemer in 30 minutes if I did not watch his every move. He would be out that door like a shot in spite of the chain locks I have at the top of every door! Like an idiot I did this a few times and realized that she and I would never be on the same page. I left there each time feeling like a whipped pup.

Anywho, this doctor seemed very nice and interested in providing W some coping skills for his anxiety. There was probably a big red circle on my chart that said, “Look out! Bitchy mother with this one!!” But I don’t care as long as they help W.

W performed his quirks and squirms like a pro, hanging upside down off of the couch while we talked and interrupting the doctor every two minutes with concern that there were toys inside the play garage that clearly did not belong there and where do they go and who did this-let’s string them up on the line for putting the toys away improperly!!! When she asked W questions, he promptly went into W World and pretended not to hear her. So she got a pretty good idea about what we are dealing with.

All in all as good visit I think. We start therapy next Tuesday. She will either work wonders for him or he will irritate the hell out of her. -Time will tell!

Monday, May 23, 2011

Welcome to my blog!! I am not sure what I will be writing about but it will be about my crazy life. I wanted to start this blog back when we adopted our youngest boy, W, but I was a walking zombie for about 4 years so now I start to record our life. I wanted to document our family so my kids will have something of me to look back on and remember our times together.

As a sort of “get to know you” start, I have been married to my husband, Wade, for 21 years this summer and we have two boys. C is 16 years old and whatever I write about him will probably be censored because well, he is 16 and paranoid. W is 6 years old and mostly the entertainment of our family in all his quirky ways. Will has an anxiety disorder and sensory processing disorder and is “on the spectrum” as they call it. I am convinced he has Asperger’s but so far I cannot get an official diagnosis so we will just stick with the three we already have!

As far as the name of my blog, it comes from something W says to me daily. If we do not go the same way EVERY time, it results in a total panic attack. I do this on purpose under the orders of his psychiatrist to try to de-sensitize him. It also applies to how I feel most of the time as I try to manipulate my way thru his world of neurological distress and anxiety. I think Will’s anxiety is contagious because I now must take a crazy pill every day just to cope with his anxiety!! Better living thru chemistry is what my mama always says!!

I am going to repost my note from Facebook at the end of this entry so that any of you who found me someway other than Facebook can get an idea of how much I adore my kids and how my little family dynamic works.

Thanks for joining me on this ride!

Repost from facebook:

Will's Story thru his Mommy's eyes

by Vicki Hand Morgan on Thursday, May 5, 2011 at 12:36pm

Many thoughts have swirled through my mind, as my baby turns 6 years old, about the fate of our little family and how truly blessed we are. I have had a moment of clarity recently and it all seemed so clear, if only for a little while. So I thought I would share my thoughts before they are clouded once again by the busyness of our lives.

When Will was born and started going through cocaine withdrawals, it was truly the most pitiful thing we have ever witnessed. His poor little body would involuntarily quiver and shake and his uncontrollable screaming was so sad. I hope witnessing this for Chris has squelched any temptations he will ever have to try drugs. It was a very profound experience for him to say the least. A true learning moment for Chris. As the withdrawals subsided, then came the physical issues of underdeveloped intestines and bowels. I won’t even begin to explain how horrible that was for him!! But we survived and brought him from taking 8 medications down to just 1 by the time he was two years old.

For years now, while most are doing the “normal” kid activities, I have dragged Will to countless interventions, therapy, scans, doctors, and more therapy. I am trying to create a miracle for my sweet Will, that miracle of being a “normal” kid. While Will takes center stage in my life because his problems demand it, not because I choose it, I try to make life status quo for Chris and Wade. There is no better big brother than Chris. He is so understanding with Will and teaches him all kinds of things. When you have a child with developmental delays, every moment is a teaching moment and Chris realizes that. Sure they have their squabbles like every pair of siblings but overall it is wonderful to witness their brotherly love. Even though Wade and I have a very strong marriage, a full time job of miracle-making is tough on it emotionally as well as financially. You can choose to let it divide you or come together and become stronger for it. I like to believe that we are stronger for it although sometimes that weakness creeps in and the exhausting responsibility takes its toll. But overall, we are one tight group, my little family!

There are times when I would just like to live life and things be easy but then we would not see the wonderful accomplished boy that Will is becoming. Whenever I feel this way, God has a way of showing me just how rewarding my life with Will really is. When he snuggles with me and tells me how much he loves me and I realize the huge emotional bond I have with my son, every minute of this life we have created for Will is worth it! I will have many years to “rest” and my purpose right now is to be the advocate for this little boy who was abandoned by his birthmother and God so graciously dropped in my lap.

Slowly Will is coming out of that lost place and becoming a happy, independent little boy. He has made it past the dark moments and is one of the strongest humans that I know and there are no words to tell him how proud I am of him. I know now that he is going to be ok and I hope that he knows how very much I love him and thank God for him every single day!! He has brought me love, courage, fortitude, and victory during his short six years and I know he will continue to bless me and Wade and Chris every single day!!

I love you my sweet boys, Will and Chris!!

Brothers 2011
First day as brothers 2005