While shopping at Walmart in 2008, I began feeling palpitations, broke out in a sweat and slowly began to lose consciousness. I called for someone to help me lay down so I wouldnt hit my head a very kind lady did. All I could think of was its my heart again. After a brief moment, I was taken to the ER to be evaluated and to my suprise it wasnt my heart;I was pregnant!!!! follow up with your doctor in the next day or 2 was my discharge instructions. Needless to say, I was at my Drs office when they opened the next morning. Labs were drawn to confirm the pregnancy and later that day I received THE phone call from my Dr saying yes your pregnant and most likely there is more than one since your hormone level skyrocketed overnight. OMG!!!! Twins and triplets both run in my family. And low and behold at my guestimated 6 week appt, their were 2 tiny little sacs TWINS! Then at 20wks I found out I was carrying a girl and a boy HOW LUCKY COULD I BE!!!!! At 35 weeks I gave birth to Madeline Grace and Gavin Noel. They were perfect;10 fingers, 10 toes, just beautiful. I was truly blessed! Months passed and every well baby checkup I was asked are they doing blah blah blah and my answer was always no. Well theyre preemies and multiples so I expect them to be delayed. I head this EVERYTIME I took them in to the pediatricians office UNTIL theyre 24mo checkup. That day when I signed in they took me straight back to the pediatricians office while her nurse took my limo stroller (triple stroller with a steering wheel) into an exam room. Well...she said, weve been watching the twins over the past 2 yrs and have always felt that since they were preemies and multiples that they would be delayed BUT (as i sit upright on the edge of my chair when i heard the BUT) Im 85% sure they have autism. I sat back in my chair and said nooooo, they dont flap, rock, spin, self-abuse,stare into space, etc (all the things I remembered from nursing school and articles Ive read). Then I get the well the spectrum is like a rainbow and they could fall anywhere from mild to severe. Lets get them evaluated to see Ok Im game but I think your crazy and Im finding another pediatrician. 3 weeks later in September of 2010, Maddie and Gavin were diagnosed with autism, severe. My insides began to shake. No way was the OT, SLP and Psychologist right. Im getting a second opinion and guess what? autism, severe. Slowly I began to cry. My world shattered. How could this be? Why me? I was still in denial so I took them for a 3rd opinion and yes again they concurred with the 2 previous diagnoses. This was the worst day of my life!!! I was given a folder with lots of research studies they could participate in and some info on autism spectrum disorders and out the door I was pushed. What do I do? Where do I turn? Who can help my babies get well? This is where autism sucks!!! There is no clear treatment for autism because researchers have no idea the cause. The cause keeps getting blamed on one another while the statistics keep rising. The CDC released new numbers a few days ago 1:68 children have an autism spectrum disorder. boys 1:42 WHAT THA !!!!!! Why do the numbers keep increasing and no clear treatment plan in site especially one that may slightly be covered by insurance!!! If they had cancer, doctors would have an idea how to treatment them;if they had broken bones, they could be fixed but autism....TRY this this and this and good luck was the best plan of care I ever got! Needless to say, my babies have not gotten to be babies. They have been in speech, occupational, physical, feeding and behavior therapy for years. Ive read and read but theres nothing like the advice from someone who has been there and done that!. I have shed many tears, gave up my career, thrown things, broke things and and yelled at God many times what did I do to deserve this!!! Since then I have grown a backbone. At one time I can remember leaving a speech session at Vandy and while waiting for my truck Gavin starts to run laps around the bench in the waiting area. A man and lady were sitting there and i hear look honey its Forrest Gump! Run Forrest Run!! I instantly began to cry. How could someone be so rude? You have no idea what is going on! at the time I hadnt seen the movie (and still havent) but I have heard clips of Tom Hanks voice and he appears to be delayed. Today, I wouldve been in his face letting him know Gavin is overwhelmed in his surrounding and this is his way of self regulating and educate him in autism 101! And if he dare roll his eyes at me, it would be on!!! Please dont take pity on me. Yes, I feel like Ive given up so much but who wouldnt do all they could for their children? Yes, I would love to be able to sleep through the night (the twins are 5 1/2 and dont sleep). Yes, i would love to see my children grow up to be president one day! But I dont have a crystal ball to know their future. I havent worked in almost 6 years. let me clarify that...I havent worked to get a salary in almost 6 years. I feel like if it werent for facebook I could count my friends on one hand. I feel like im a chauffeur most of the time.;gotta be at therapy in Nashville at 9, were gonna be late because of traffic, Maddie stop crying weve got to go to speech now hurry up and sit down! These are the thoughts running through my headon a daily basis. Im sure you dont enjoys my posts of Maddie ate a banana today or Gavin ate some chicken. You have no idea what an accomplishment that is until you live it! Maddie lived off Chili Mac and Gavin Lsy;s stax sour cream and onion chips ONLY for months! Oh theyll eat when they get hungry NOT!!! I tried giving Maddie something to drink in her cup besides milk and she ended up in Childrens hospital with dehydration because lil diva refused to drink for 3 days!!! She had her tonsils and adenoids out due to obstructive sleep apnea and she refused to drink for 17 days!! i had to bird feed her 10ml of liquid every hour for 17 DAYS!!! If she took 20, then i could skip an hour. Since the time change, Gavin ran his clock back A LOT!!! he gets up between 1-3am every morning except last night, he slept till 5:30yay!!) Maddie has slept through the night about 6 times since she was born and if youve forgotten they will be 6 in August! Nothing like having a newborn for almost 6 years (up every 3-4hrs). Anyway, looking back and begging for Gods forgiveness, I understand why I was lead to nursing. Never in my wildest dreams did i ever want to be a nurse;i loved numbers so accounting here i come. But i was begged to take a fundamentals of nursing class by a friend and LOVED IT!!! Its hard to believe ive been a nurse for 20years and because of nursing I have learned patience, kindness, unconditional love, comfort, understanding etc to a whole new level. So I no longer celebrate autism awareness month, I celebrate autism action month. Im beyond aware, now its time for action! do you have any idea what ABA therapy costs a month? of yeah and Ive got 2!!! TN let me down a few weeks ago by allowing the autism insurance reform bill to die.34 other states have made provision, why cant TN? This is my plea. Support autism insurance reform. ABA (applied behavior analysis) therapy along with speech and occupational therapy have been the best things that my children have encountered since they were 18 months old. The early intervention preschools to promote learning with peer models is exceptional! Im so very grateful and feel indebted for life to everyone who has touched our lives over the past few years whether it was a therapy session, a text to a parent who has been where I was, or a shoulder to cry on because Lord knows I have cried. Im so thankful to be back in church. I didnt know if I would ever be able to attend again. Its wonderful to hear Maddie say go see Janie at church Janie Kullmar You should see Gavin walking into church. He leads us straight to his classroom every Sunday. My babies have made such great progress and there is still so much more to go but there is no doubt in my mind my babies are happy and will be healed. This is my story, my Jesus story, and through Him all things are possible!!
Posted on: Thu, 03 Apr 2014 03:26:17 +0000
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