Friday, February 26, 2010

I guess it's time for an update. Let's see...what's happened since April! A lot of course.
Parker was diagnosed with autism sometime in June. That was no surprise. He was evaluated by the TEACCH center in Fayetteville in September and was said to be "moderate" on the spectrum.

The diagnosis brought an end to the endless doctor visits, an end to the searching, and an end to one kind of hope. The kind that wanted to believe that he was just delayed and would catch up eventually. It, the diagnosis, did not bring an end to the tears. His or mine. It did bring more therapists. It brought me a name for what is attacking our family.

The diagnosis did not bring much comfort. I think most doctors are kind at heart and want to give you some amount of good news. No one wants to look at a mother and tell her that her son has a lifelong disabling condition for which there is no treatment and no cure.

We have seen so many doctors and so many therapists. But I have concluded that they cannot help us. Most know very little about ASD (Autistic Spectrum Disorder). I have asked and begged, and begged and begged every doctor and therapist to help me stop his screaming/tantruming/prolonged crying. I'm sure any one of these fine people would gladly tell me how, but they just don't know. I love his therapists. I like most of his doctors. But they have given all they have. They have their limits.

So, I throw myself on the comfort and the mercy of the Lord. He is the only comfort I have, but He is enough. :) I pray without ceasing for my child. I pray for myself and our little family under siege. I will be the persistent make that the persistent mother!

When I pray for Parker, I ask for complete healing. I ask the Lord to increase his vocabulary and give him the gift of conversation. I ask that he would be able to relate to people on an age appropriate level, that he would eat a variety of foods. I ask for him to learn to regulate his emotions, for him to be covered and filled with the peace of God's Holy Spirit and that His peace would reign in our home.

But I also acknowledge that God may have plans for Parker as he is. I have learned that my trust of God's character is strong. I know He is good. My life is an offering to Him. Everything I have belongs to Him. If it serves His purpose more to use Parker as he is, I will choose to be content with that. It is a gift to be able to say, in perfect peace, "Your will be done."

So that is where I find my peace and comfort....I trust in the Lord with all my heart.
You can say it, or you can live it. The choice is yours.

Monday, April 20, 2009

Here we go again!

Parker has an appointment with his pediatric neurologist today. I'm hoping to discuss his low muscle tone (hypotonia), developmental delays, the seizure, and a long list of other puzzling behaviors.

I dread these appointments. There's nothing fun about them, but it's nice to get information. So far the pattern has been to see one doctor and be sent to at least two more, so we'll see if the pattern continues, lol. I do expect the doctor to order some tests that we'll need to have done and then I'm assuming we'll be back for a follow up visit.

I'm still not convinced that Parker doesn't have autism. I know the developmental pediatrician and pediatric psychologist don't think he does, but I still don't understand their rationale for that. They say because he makes eye contact and at times enjoys social interaction that they're not thinking ASD, but I've seen plenty of children or heard of plenty that do the same and have it. My concern is that *if* he does have autism, we could miss 6mo to a year of treatments waiting for a diagnosis. It's hard to diagnose autism period. It's harder to diagnose a two year old, and Parker's only 19mo old -almost 20. But, it's hard to ignore all the symptoms even the ones that are mild. It seems to me that 1+1 should = 2.

Let's hope it doesn't this time. ;)

Saturday, April 18, 2009

Teaching a Three Year Old Lessons From the Bible

Wow. I never knew that being a parent could be so hard! It looks so easy when you're watching everyone else doing it!

I knew that Easter was on it's way a few months ago. Don't ask me how I knew, it's a secret. So I thought I'd be super Christian mom (or even average) and buy some of those Resurrection Eggs to teach Conner, my three year old about Easter. There are a dozen eggs and in each is a small object that represents a part of the death, burial, and resurrection of Jesus. Here's a link:

For the most part, it was way over Conner's head. There was some stuff I didn't want to explain yet like the crown of thorns, whip, linen cloth. But Conner loved the pony-aka donkey that Jesus rode into Jerusalem. The last egg is empty to represent the empty tomb. Conner didn't like that one, lol. When I opened it (oh, and I was SO excited) he said, "Oh no! It's empty!" I said, "That's the best one because it shows us that Jesus is alive!!" yipee!!! I tried really hard to convince him that it was a good thing that the egg was empty, but all my Christian/parent/teacher skills failed me at once. He said, "It's okay Mama. We can put the pony in there."

*sigh* I'll try again next year!

Friday, April 17, 2009

This is some scary stuff!

I need to relax or something. I don't know how, but I do.

Since Parker's seizure, which was very mild, I haven't slept more than two or three hours at a time. I go to bed and lay there trying not to think the worst. My mind won't shut down and I end up awake until 1 or 2am. When I finally do get to sleep, I have nightmare after nightmare and wake up in a panic. I don't remember any of the dreams, but when I wake up I have the sensation that something is after me and I need to run. Last night alone it happened three times. Then Parker wakes up for his usual hour to two hour time of sleeplessness. By the time he goes back to sleep, I may get another hour of sleep before Conner wakes up.

During the day it's not so bad. I've been busy gathering reports and records from Parker's local doctors to take to the pediatric neurologist on Monday. I was advised to start a daily journal of all the foods that Parker eats, his temperment at various times throughout the day, his sleep habits, and stooling. His developmental pediatrician hopes we can learn more about what's making him cry so much this way. It's nice to have somethign to *do*. That's part of my problem at night. I can't *do* anything but lay there and worry. I do have control over that, or I should. I could be laying there meditating on scripture and truth instead of replaying my worst fears for hours.

The nice thing is that Jerry will be here tonight. I always feel much more calm when he's there beside me and he helps with the nightmares. I've had them before, and he talks me out of them. There's a good husband for you! I've never had them like this before, but I'm sure it's related to my stress and anxiety level right now and fatigue.

It's a scary thing to hold your child while they seize. It definitely got into my head. I'm so glad we can see the neurologist on Monday. We've seen her before and I liked her a lot. Maybe she can start to shed some light on what's going on.

I don't want to be told that everything's okay, because I know good and well that it's not. Maybe tomorrow I'll blog about the balance between hope and reality. I've been thinking about that.

Thank you to my friends and family! I'll keep you informed! Love you all.

Wednesday, April 15, 2009

Parker Had a Seizure

This afternoon the boys and I were leaving to go to the doctor’s office (of all places) for some records. I held Parker with my left arm, and used my right hand to activate the automatic door on my van. When the door started to open, Parker’s body became very stiff and he started convulsing in my arms.

I’m sure I had a rather stupid look on my face while I just stood there and watched him shaking. The whole event didn’t last longer than 7 or 8 seconds. It was very brief, but shocking.
We called the doctor’s office to decide if we needed to go to the ER, their office, or nowhere at all. We ended up going to the office and the hospital! Parker is fine. It must not have been too bad, because he didn’t get sleepy afterwards. He was eerily normal. He was crying in the van (not atypical) so I started a Diego video and he was fine.

His regular pediatrician examined him and said that he passed his “neurological” exam. She said that sometimes the brain just misfires. A single seizure all by itself is not cause for too much alarm. She did send us to the hospital for some bloodwork, but we were in and out of there in 20 minutes. When can you say you’ve ever made an unplanned trip to the hospital and left in 20 minutes?!!!

After the doctor’s office and the hospital, I brought him home, fed him supper and sat down to play with his farm set. I said, “Look Parker! It’s a cow!!” And that sweet little boy threw me a bone. He said, “Moo!” :D As if to say, “I’m okay Mama!”

Thanks for your prayers again! I wonder if the delays and symptoms of autism, sleeplessness, and incessant crying could be related to whatever caused the seizure. But there’s no way of knowing that until he sees the neurologist, so I’m trying not to worry. We’ve been through a lot with Parker lately and my overactive fear trigger went straight to brain tumor! Sheesh! I need to calm down!

So, that’s what happened. He’s okay and I am too. I’m taking a few deep breaths and enjoying a glass of sweet tea. Parker is asleep and everything is going to be just fine.

Saturday, April 11, 2009

Parker’s Visit with the Developmental Pediatrician

Parker’s visit with the developmental pediatrician turned out to be Parker’s visit with the developmental pediatrician, the pediatric psychiatrist, and an occupational therapist. We were there from 9am until noon.

Before we left the waiting room, the developmental pediatrician, Dr. Harvey took a picture of Parker’s eyes with a special camera that looked to be older than me. It is used for vision screening. When the picture came out Parker’s pupils showed up white instead of black. Dr. Harvey said, “Oh no!” He looked at me funny and said, “This is not good.” He tried the test again, with the same results. He said that that camera is only a screening tool and that he is not an ophthalmologist, but that is appears that Parker may be severely farsighted (can see well far away but not so well close up). He bet me a six pack of root beer that Parker will need glasses.

So, right away that put a stop to any cognitive testing because those tests involve giving Parker toys and tools and measuring how he manipulates and works with them. Those tests can not be done until he either has (and has adjusted to having) corrective lenses or until he passes a vision test given by an ophthalmologist.

The other tests could still be done, so we were able to complete most of what we went there to do. Our primary concern for Parker was autism. He has (in small amounts) several indicators of autism. The pediatric psychiatrist, Dr. Wilson evaluated Parker using a different screening tool than his regular pediatrician used a few weeks ago. This one was more specific and thorough. Based on his observation and interaction with Parker and the results of that screening tool he does not believe that Parker has autism. Praise the Lord for that!

Dr. Wilson said that Parker’s social interaction which is the core of autism was actually pretty well developed. He is not in “his own world”, makes good eye contact, enjoys playing and being around other children and seeks their interaction. He said that that is the hallmark of autism, the inhibition of social connections. He also said that Parker is pointing for what he wants (at times) which for some reason is another core trait of autism that he lacks. The scale put him directly between zero concern for autism and very little concern for autism. What a relief!

I had a lot of questions for Dr. Wilson. If he doesn’t have autism, why did he push his wagon in a circle for 45min last weekend? Why does he tip toe around the house echolating (repeating the same sound over and over)? Why does he flap his arms? Why does he cry so much? Why is he so delayed? So far there are no answers to those questions. So we are to continue to examine Parker.

Dr. Harvey, the developmental pediatrician saw Parker last. Parker had started crying by then. Most of you know that Parker cries quite a bit. He cried for about an hour and a half while we were there. It was very unnerving and we had no idea (as I usually don’t) why he was crying! If I knew, I could fix it, but we don’t know! Thus, more evaluations! Finally though, two pediatric specialists have seen the unexplained, prolonged crying first hand. I have been trying to communicate this problem to doctors and specialists for 19 months now and finally someone is recognizing that is a problem and that it does need attention. Praise the Lord for that too.

Dr. Harvey is primarily concerned with Parker’s hypotonia/gross motor delays, his speech delays, and the unexplained, prolonged crying. He is sending us to UNC Chapel Hill to see a pediatric neurologist to have the MRI, EEG and any other tests the doctor there sees a need to have done. He also wants to have Parker’s blood tested for metabolic and genetic disorders. I asked him is there is a specific disorder that he is looking for or if there was any disorder that from his interactions with Parker that he thinks Parker may have. He said no and that if there were he would tell me.

So, Parker probably does not have autism. We have to dig around a bit more to determine if he has some other disorder or to find a cause for the delays.

I feel great. I’m so thankful that it’s probably not autism. I have to say “probably” because I was so prepared to receive a diagnosis of autism and rather convinced that he may have it that it’s hard to let go of it. I’m sure that sounds strange! Whatever it is (if it’s anything) Parker seems to be getting better and better instead of worse which is wonderful. I am so relieved, like a weight has been lifted.

It was terribly difficult to walk into that office today. I have never been more frightened or dreaded anything more. I knew that there I would have to face my greatest fear that something could be very wrong with my son. I was praying and asking the Lord to help me and give me the courage to go. In His great love for me, He reminded me of a verse I’d read not so long ago:

“For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.” Isaiah 41:13

I can’t ask for any more than that. It means so much. Thanks Lord!

Friday, April 10, 2009

Are these the flood gates?

This is Parker feeding the ducks and geese. The ones you see are actually goslings. Conner, Parker and I fed them plenty of bread and year old animal cookies that had never been opened. I'm not sure who ate more (bread). The ducks or Parker. Conner and I were having a ball tossing crumbs into the water and watching the appreciative ducks gobble them up. I looked down to see what Parker thought of the whole thing and he had both cheeks stuffed full and a long piece of bread sticking out of his mouth!! Conner and I fed the ducks and Parker fed himself! I guess he figured it was snack time! He loves nothing better than food and drink, that Parker! He was so cute. I tried so hard to get him to thow the ducks some bread, but he held it tight and clutched his little fist close to protect his snack!

Even though he didn't want to part with any bread to feed the ducks, Parker did something amazing!!! I was doing my usual "the whole day is a speech lesson" drill and pointing to the ducks and saying, "Duck!! Duck!! Quack-quack!!" over and over again. And low and behold, the child said, "duck!" a few times and "quack-quack" too! I was so excited! That was the first time he'd seen real ducks up close and the first time he'd repeated something I said so...easily? We had to repeat "get down" and "all done" hundreds of times before he said them. But he said, "duck" and "quack quack" right away.

THEN!! We went on a golf cart ride and everytime the cart would stop Parker would say, "Go!" Holy cow! The child is talking! Not only that, but he looked at ME and said, "Go!" This is a very good thing.

THEN! We were reading a book that had a picture of a cow in it and I said, "Cow! Moooooo!" A few pages later there was a picture of that same cow but from a different angle and with a different background and Parker said, "Mooooo!" :D

Fuel for Hope.