Sunday, December 30, 2012

Tomorrow is another day


The holidays have been a struggle.  I'm finding it hard to be optimistic lately, which isn't like me at all.  I'm struggling to figure out what to do next with Lincoln.  He is on another round of antibiotics for his month long ear infection currently.  Hoping it clears it up this time!  It's been a wild last few weeks, but tonight I broke down.  

As I listened to Lincoln playing and refusing to sleep, I finally just went in and held him in his bed.  He's getting so big though, that holding him down is a challenge.  I laid their struggling to keep his head on the pillow while singing to him.  Doing things like this and wondering if I will be doing this with a huge 15 year old boy in 12 years, scares me. He finally calmed down and laid beside me resting.  I just held him and cried until his hair was soaking wet.  I find myself praying and just repeating the same thing 500 times during the prayer " PLEASE BRING LINCOLN BACK TO ME!  FIX HIM!"  Right now tonight, I just feel cursed . I'm scared, I'm freaking out about what the future is going to be like, and I'm just plain ole' mad.  

I can have a night like this every once in awhile, but I have to remain strong for him.  I have to be optimistic for him.  I have to do my best with what we've been given. Tomorrow is a new day and I will get back on track and believe in our plan, even if everyone else around me doesn't.  I have to believe this isn't going to be our life forever. I have to keep trucking, because if I give up on him there is no one else to fight for him.  I will be stronger because of this journey!!  So tonight I weep, but tomorrow I will be coming out strong with my boxing gloves on for team Lincoln :)  

Monday, December 17, 2012

Cookie Cutter

All of my friends are posting the cookies they are making for Christmas.  I should join in the fun, but I've never had much success with dough while cooking.  Who knows, I may get a wild hair and try it later today.  The purpose of a cookie cutter is to create a uniform shape that is consistent with the previously cut out shape. Doing so allows you to have an army of perfectly shaped gingerbread men.  Unfortunately every now and then the cookie cutter doesn't work as planned and the results are  less than perfect gingerbread men. The cookie still tastes good, but just isn't as appealing as the other perfect ones.   Then in some cases you can have the most perfect looking cookies, yet the dough wasn't prepared properly (probably by me ;) ) and it isn't as good on the inside.   There are so many different  variables that could have made this perfectly looking cookie mess up. Did I add too much salt? Did I forget to cream the butter and sugar together first?   So many options for error, but I used the cookie cutter?  It should all be the same right?



So why am I talking about cookies? I'm talking about it because there is no cookie cutter for autism.  There can be 10 kids with autism and all 10 will present themselves differently.  The media however, gives a portrait of autistic individuals and society thinks all autistic children are alike. Currently after a violent tragedy that just occurred in our country, the media is streaming content of the perpetrator being autistic/aspergers. It's hard to watch this knowing, some viewers aren't educating themselves and autistic children will now be deemed as violent individuals. This is far from the truth, especially for Link.

Below I will share with you an "All about Lincoln" sorta thing. This will give you a better picture of the cookie cutter that created him :)






-Lincoln smiles all the time
-Lincoln is very cuddly and enjoys snuggling.
-Lincoln will hug you when asked
-Lincoln has never ONCE hit anyone out of anger.  His sisters will jump all over him, but he just moves.
-Lincoln loves to be tickled
- Lincoln is severely speech delayed. He communicates mostly through dragging us places.
- Lincoln has issues with repetitive behaviors to the point of obsessions.
- Socially Lincoln would rather be alone than play with other children, but they don't bother him.
-Lincoln's entire schedule can be thrown for several loops, but he doesn't care.
-Lincoln isn't bothered by loud noises and most of the time he is the loud noise :)
- Lincoln will eat ANYTHING I throw at him.
-He has allergies and asthma
- Lincoln minds fairly well for a 3 year old, but tests us and selectively checks out.
-Lincoln doesn't feel pain
- Lincoln can't grasp your emotions. If you are upset at him , he sometimes just laughs and laughs, because he thinks we're "playing" or he just doesn't comprehend the emotions.
- Lincoln loves going outside
-Lincoln doesn't play appropriately with majority of toys, unless you are playing with him demonstrating.
- Lincoln is the sweetest thing on the planet :) 

Saturday, December 15, 2012

About Me




 -Southern Girl

-NOT AN ENGLISH MAJOR (obviously)

-Youngest of 3 girls.

-Met my husband when I was 17

-Married my husband in a sandwich shop that doubled as a wedding chapel (wasn't planned that way)

-Diagnosed with Multiple Sclerosis at 19 by two doctors, then at 20 was told I don't have it. Time will tell.

- Was a Pharmacy Tech for 5 years before becoming a stay at home mom.

- Was studying Elementary Education and took a photography class on a whim.

- Owner of Three Wishes Photography.

- I hate the texture of laundry.  I can't fold them without cringing.

- I'm a talker.

- I love anything mint flavored.

-My son was named after Link the character in the video game Zelda.

- I love to travel

- My twin girls have presidential last names as their middle names (McKinley and Monroe )

- My birthday is 11/19

- I graduated in a class of 41 in 2005

- I'm a giver.

- I'm actually pretty good at golf, but I've only played it a handful of times.

- I have a Protein S deficiency.

- I hate Chemistry and Math

- I love crafts

- I'm the most musically challenged person on the planet

- I don't care for music. I can go weeks without turning on the radio in my car.

- When I do listen to music, it better have some violins or pianos in it :)

- I have a " I can do anything" personality, hence my determination to bring my son back to me :)


Wednesday, December 12, 2012

3 years in 9 minutes


Just a video to show the changes in Link over the last 3 years.  It's sad for me to see it happen before my eyes on video.  I just have to remember that the next video will be the one of him  improving .

The last video is the summer before he turned 3. He has improved GREATLY since it.  It's almost hard to watch it, because he doesn't even notice as I get up and walk away or return.  Lincoln was not born this way and I think the videos are enough to prove that. 

Do other people get it?

No. Until you raise a child with delays, you can't possibly fathom what it's like.  Do I feel like a failure daily ? Pretty much. I realize now after having 2 other children, that it wasn't anything to do with me.  I do feel I made some inaccurate decisions for him.

Things I would have changed :
1) Delayed Vaccinations
2) Kept him in Moms Morning Out

3) I would have put off having my 2nd (and 3rd) child.  Although the girls keep me sane and have helped me realize it wasn't my "parenting" that created this. It would have been easier to afford the things Lincoln needs and also give him more 1 on 1 time.
4)Kept him on a GFCF diet back in April instead of giving up after 2 weeks.
5. Would have soaked up how he was between 0-18 months.

I do feel having a child with delays makes you appreciate the small things.  I appreciate when Lincoln says "momma" like he did today and yesterday (YAY!!)  I appreciate when he comes to me for things, even if it's to just push him on the swing.  People tell me "When he does start talking you will want him to be quiet." I can tell you now there will NEVER be a moment where I will want that. I've lived in silence for 3 years waiting on my son to talk.  You expect your child to talk at around 18 months, but it never came for us.  I expected to be able to do all the fun things the Christmas season has to offer with a functional speaking 3 year old, but it didn't happen again this year.  I catch myself saying "Hopefully next year we can."  Then the next year comes and it's not feasible again.   When other kids his age are picking out a costume and trick or treating, my son can't tell me what he wants to be, or say Trick or treat.  When other kids are saying what they are thankful for on thanksgiving, my child can't.  When your child is getting so excited over Santa coming and telling you everything he wants, Lincoln doesn't.  Worst of all is on Valentines day when children are saying how much they love their parents, my child doesn't. I've never heard I love you from my almost 3 1/2 year old son.  Lucky for me he shows it in every way he physically can at this point.

So in conclusion to that very drab/honest paragraph, no people don't get it.  People don't think about the small things I have yet to experience with my son.  I'm still waiting and I wont give up. I'm his mother because I'm a fighter.  I will fight until the day I die for this boy and I will do whatever it takes to bring him out of this trap he is in. Our family may not be like yours and that's ok. We are doing what works for us, so don't judge our parenting and choices based on what worked for YOUR family. Everything is altered and it's a totally different ballgame.  Lincoln is mine and I love him for all the things he is , even the nonverbal part.  He is more than what I expected and I love him more than what I expected.  He is mine for a reason and as beat down as I get some days, I know I'm the right lady for the job.  <3






Monday, December 10, 2012

Step 2-Epsom Salt & Methyl B12

Through my research I found a great deal of information about methyl B12 and helping autism folks. I thought, what the heck.  I was a pharmacy tech BK ( before kids)  and I knew that the body naturally expels any extra b12 in your system that isn't needed, so no worry for overdose.
I also read about a need for magnesium sulfate in children with autism, so the Epsom salt baths helps autistic children replenish their magnesium.


On 11/26 we started doing Epsom salt baths (2c of epsom salt -Dr Teals is our favorite- to 1/2 a tub of bath water) . Then on 11/28 I started Methyl-Mate nasal spray by New Beginnings .  (1 squirt per nostril. I found that if you squirt it in his nose, then hold his mouth, he is forced to suck it up in his nose . It isn't pretty and I don't do it when he is snotty, but it works for us. )

Lincoln began to do the following after starting these biomedical treatments:

-Better eye contact
-Interaction between people increased.
-Noticed what was going on outside of his "bubble"
-He started to show emotions upon being scolded .
-I fake cried in front of him and he hesitated, but still didn't react, still an improvement.
-He told me he was cold, this is the first time he has ever informed me of even noticing change in temperature.

SO SO SO many improvements in him.  I'm amazed and excited for Step 3 to come into play next month.  I've elected to do 1 change a month.  Therefore I will know more about what what is and isn't working.

He started GFCF in 10/12
Elimination of Food Dyes 10/12
B12 and Epsom 12/12

It's the start of a change and we're 1 step closer to improving his way of life.


The following pictures is Lincoln in November 2012 and December 2012. You can see a difference in him in the image alone.  He has put on weight, he is making eye contact and you can see a little light in him. Also what I see is hope.  Hope that I can fix this and I WILL never stop until I do.
November 2012
December 2012


Step 1- Allergies.

Shortly after Links hospitalization, I elected to have his allergies tested further. We knew of the peanut allergy, but I couldn't help but feel there were more. I was hoping it may be a link to his recent stay in the hospital and it wasn't just a random asthma situation.  At the allergies he elected to do blood testing due to the high amount of steroids Lincoln had been on .  The results were the following :
5-Peanuts
4-Sesame
2-Cashew, Codfish, egg white, oat, pistachio, soy, tomato, wheat. 

1- Almond, brazil nut, egg yolk, milk, 
0- Pecan , Shrimp, Walnut . 

So the boy can pretty much eat all the pecans, shrimp, and walnuts he wants :) 

You get mixed reports on which allergens you test positive for to avoid.  We elected to get rid of them all.  We thought, what the heck we'll try it.  The results were more than beneficial! 

1.)Lincoln's skin as an infant was so bad with eczema that it looked as though he had cigarette burns on his ankles at times.  It was pitiful!  His skin has always felt like leather or sandpaper. Upon removing these allergens, he now has soft skin for the first time in his life! 

2)After awhile his stool became solid, another first since December 2010.  

3) He started zoning out less. 
4) He was able to nap again without waking up crying for 1+hr. It is amazing!

After seeing these positives, we figured this special diet (which happens to be GFCF) was the key to the first step in bringing Lincoln back to us.  I then started to research other ways to help him through bio-medical treatment.  Lincoln also exhibits a great deal of hyperactivity, so I found out about eliminating food dyes to help hyperactivity. The results were GREAT! Lincoln is 50% (or greater) less active than he was! I was amazed! If all of these changes were brought on by eliminating items from Link's diet, what other things can I alter or add in to change his life for the better? The fuel to my fire was then ignited and I refuse to stop and just accept my son is "autistic"!

Friday, December 7, 2012

Hospitalization for Lincoln and a Change in me

In September 2012. Lincoln came down with a cold.  One night he started having trouble breathing, so I gave him a breathing treatment. He continued to do fine through the night and that morning I was awoken by his cough.  I got him out of bed and started a breathing treatment on him.  He finished the treatment and still continued to struggle. He was retracting and very pale.  I gave it about 20 more min, but there was no change.  I called my dad to come over to watch my little ladies and Lincoln and I headed to the ER.

Driving to the ER I was very worried about him. He continued to cough and clear his throat  Upon arrival they checked his SAT and it was 94.   We went to a room and he just laid on the bed, lethargic like.  This wasn't my little boy.  My Lincoln is very active!  My Lincoln wouldn't stay on a hospital gurney for more than 2 seconds ! This Lincoln was blank, quiet other than random coughs and allowed the nurses to evaluate him with pretty much 0 fight.  We were in luck that there was a nursing student with the nurse today (**eye roll! ** I know that everyone needs to learn, but really do you have to practice on my little boy?!)  The doctor said that he had a very bad double ear infection. I had 0 clue his ears were hurting him! This is what happens when your child can't communicate with you.  It's heart wrenching to know he was hurting so bad and unable to tell me. I'm his mother, I'm suppose to be able to protect him, care for him, and nurture him, and I'm failing.  

They gave Lincoln 2 shots and the nursing student pulled the shot out halfway through, then proceeded to stick him for a 3rd time :(.  My mamma bear claws were about to come out!  They left and Lincoln was still out of it.  We did another breathing treatment and the nurse came in to discharge us.  She starts the discharge paper work and I just kept thinking this isn't right! I watched as she was typing furiously on the keyboard and then looked at my very sick little boy still retracting and struggling to breath.  What do I do? I finally asked her say " he is still retracting. " She says nothing.  I then proceed to pull up his shirt as said more firmly " He is still struggling to breath, look. This is retracting correct? "  She huffed and replied " He's going to be alright , he has had a breathing treatment, he has had 2 shots, your going home with an antibiotic and steroids. HE WILL BE ALRIGHT."  At this time I'm in shock , because I know my little boy IS NOT ALRIGHT!!! She was about to check him out and I asked " Are you going to check his SAT again before we leave?"  She apparently thought it had already been done.  She returns with an adult finger grip SAT monitor. I reply " He doesn't do well with that , he will need a pediatric one to get a good reading. "  She proceeds to put the adult finger grip on his small, very pediatric finger.  I watched closely as the numbers appear 96,95,94. "We'll say 96, she says as she takes the monitor off. THIS ISN"T RIGHT!!! We are checking out and Lincoln and I are walking to the car. By the time we reach the car Lincoln is struggling to the point of putting his head on the car out of breath.  I put him in and drove across the street to his pediatrician's office who had just opened for the day.

At the pediatrician they checked his SAT and it was 92.  By this time he is very glazed and out of it. We were given another breathing treatment and it brought him up to 93.  The pediatrician then admitted us to the hospital. This felt like doing the right thing . He is a very sick little boy and needed help.  We were their for 2 or 3 days, it's a blur now.  He did awesome and was on the mend! His SAT still barely got over 95 at night, but through round the clock breathing treatments and the antibiotics coursing through his body, we were released that Saturday.

Watching Lincoln go through all of this, being by his bedside unable to sleep , gave me a different perspective. Watching the SAT monitor as it dropped through the night as I gritted my teeth in fear waiting for the next breathing treatment , gave me a lot to think about.
1) I love this little boy with ALL my heart!
2) We have to make a change to prevent future instances like this.
3) My mothers instinct is rocking :)
4) God gave me this child and all the challenges he has. Lincoln is the child I was meant to mother.  I lost my first son, because obviously Lincoln was meant for me.
5) I have to stop dwelling on what all he can't do and focus on what he CAN do!

6) I have to bring him back to me! 

Now we're up to speed

So now to sum up my crazy first 3 years of parenting.

Speech delays, Allergies, Eczema, Asthma, and the looming thought of Autism in my son, that is the what we've been battling the last 3 years.   At his 3 year check up the pediatrician finally said the "A" word.  Yes I had thought it millions of times before and been petrified about it, but now it was reality.  He asked about testing him and I said I  wanted to wait 1 year for him to be in a social school environment. From July to September , I shut down my relationship with my son. Unsure if shut down is the appropriate wording, but we'll go with it.


During July-September I felt as though I was a failure.  I researched what could have gone wrong to cause Lincoln to be like this. Nothing I found added up.  VERY few individuals could relate to what I was going through.  Seeing my friends little boy who is 3 days younger than my son, broke my heart.  Don't get me wrong I love that little boy , but he was doing everything I dreamed we would be doing with Lincoln.  We weren't though and the longer I dwell on the "what should have been," I delay helping my son.  I think this is the closest I've ever been to depressed. I'm a very happy go lucky person, but watching all the other 3 year olds progress and mine stay at a stand still hurt.  I wouldn't wish it on my worst enemy.  
During this Zoo trip (Where most of the pictures for this post are from) I noticed he wouldn't look past the fence. It was as though he couldn't see anything past his little "cart". We had to rent because he wouldn't walk with us. I remember my husband saying "This was a bad idea!" and I snapped back that " He may not cooperate or enjoy it, but we're doing it because he has ever right to be at this zoo as any other kid. His sisters were loving the animals and squealing at them (they are 16 months here) , but Lincoln didn't even recognize them. He stayed blank majority of the day.  
Being a parent is HARD!  At this time I am a parent to 1 year old twin girls and a 3 year old possibly autistic son.  Everything I ever wanted was to be a mom, but being a mom of a special needs child never crossed my mind.  I waited for the milestones of speech , but they never came. It was expected, but life is funny and it never happened for Link. God thinks I'm super man, guess I better show him how super I can be.  



  

Tuesday, December 4, 2012

1-3 years.






Between 12 and 24 months, I have a huge blur.  I was pregnant with Lincoln's sisters (Twins born April 2011) and through my research of happenings I noted the following between years 1 and 3 :

8/10 (13 months)-
1st ear infection/sickness-  reaction to Amoxicillin and switched antibiotics.

12/10 (17 months)-
-Lincoln starts waking up from naps screaming crying tears for 1 hr+  This is when naps phased out in our house.
-I also report that Lincoln doesn't understand or listen to the word "No!"
- I comment that Lincoln has had pure (TMI ) mush diapers for his bowel movements, consistently for 3 weeks.  It didn't stop until we started our GFCF diet in (October 2012!)


3/11 (19months)-
Lincoln loves books
Lincoln isn't showing favoritism to Right or Left hand. Still unable to use spoon

5/11 ( 22 months)-
-I report that Lincoln has 20 words.  His receptive language is well, but he isn't using his expressive language
-"He was looking at a picture of a duck and I said "The duck goes quack quack" he grinned and said "cack cack" then looked at my husband and said "daddy do duck" asking him to quack like a duck.  
 


He also has a book of colors and said yellow banana, purple, blue, car, goldfish, red shoe, and kitten. He isn't mocking me either, he will actually turn to the pages and point to the items and say it.' 





8/11 (2 years 1 month) - Lincoln is still not talking . I call our state Early Intervention and we start Speech therapy.  His speech evaluation shows he has the speech of a 14 month old with an OCD personality   During his evaluation Lincoln immediately starts to line up and organize items. He would organize by colors and shapes.  Luckily if the organization is disrupted , he just continues to reorganize without any freak outs.  




 9/11- (2 year 2 month) - Still select words and only on Lincoln's terms.    Speech is now at 16 months . 





11/11- ( 2yr  4 month)- First conversation with Lincoln :
Link- Tree
Me- Do you like the tree? Link- Yes
Me-You like it!!
Link- like it.  



12/11- (2 years 5 months)  - Link starts to scream all the time!! He is screaming excited, not upset.  Just loves to scream and LOUD!   1/12- (2yr 6 month) Diagnosed with a severe peanut allergy. We are given an epi pen to use in emergency situations.   3/12 (2 year 8 month)- Early Intervention review.  Speech is at a 20 month level, skills are at a 34 month level  9/12- (3 yr 2 month) Lincoln Starts Preschool    

Blog Archive