Becky - posted on 10/01/2010 ( 6 moms have responded )
My son Ethan is getting ready to turn 3. At 18 months he started loosing language skills and wasn't hitting developmental milestones. He became a basically non- eating person just picking at things occassionally and taking bottles of lactose free milk for nourishment. The biggest red flag was the temper tantrums that would last hours on end and usually end up with him banging his head or slapping himself. He also became a child who is extremely high energy and has major difficulties with sleep. He soothes himself by organizing trains and balls and watching things roll back and forth with his head on the floor beside them. After talking with the pediatrician several times, I was told that he was just strong willed and he would be fine, I just needed to beef up on my parenting skills. Two weeks after the pediatrician told me that I had to take him back in for a small cold. The doctor was talking to us and Ethan threw himself down in the floor and started one of his temper tantrums and was hitting his head on the floor all for no obvious reason. At that time the doctor saw what we had tried to tell him before and referred us to a First Steps program that provided evaluations and therapy services to children under 3 in Kentucky. While Ethan seems to have all the major characteristics of Autism, he is missing the piece where he lacks social engagement. He is very social with everyone and loves to make people laugh. He also has lightswitch characteristics which make him seem very normal to most people who only see him for a few minutes. Public places, uuuggghhh, why don't they make a sign that says could you all please dim the lights and talk quietly this environment overwhelms my son! So you guessed it, public places are out! I just find it too overwhelming to him and to me for that matter, I hate having to try to explain that I am not a bad parent that lets her son throw fits everywhere, he just can't help it. He also has the repetitive words thing down path. Trains are the only thing that he seems to find comfort in right now and certain PBS shows like Kipper the Dog, Thomas the Train, and Caillou.
So let me Fast Forwad to now! Ethan is getting ready to turn 3 and will be released from the first steps program to the school system preschool program!! So he has been getting individual therapy 4 times a week up til now. The thereapy has helped him tremendously and the fits are getting better and language skills are getting much better!!! The group got together and with the help of the licensensed psychologist and over 200 visits, they came up with the diagnosis of PPD-NOS. MY problem you ask? My husband (who is bi-polar) refuses to accept that my son has any issues other than some mild development delays. He believes in the iron fist of parenting with lots of yelling and spanking. And in feedig he wants me to force him to eat! Yeah good luck with that one! I DO NOT AGREE WITH HIM!!! I handle situations with Ethan with rigid schedules and redirection instead of fits, but every day inevitably a 2-3 hour fit (possibly 2-3 fits) will happen and it is overwhelming for my husband. He either screams at Ethan (which won't help) or he leaves to go out with his friends. Either senario is frustrating since I am not getting much support from my spouse. HE knows Ethan has issues but he doesn't want to think of him as having a special need. He thinks he'll just grow out of it. My parents watch Ethan a couple times a week for me to go to work and so they are completely on board and agree with the recent diagnosis, so I do have some support there. My mom even has most of his therapy appointments at her house because it's easier without my husband there. However, other family members think like my husband, they only see Ethan for an hour or two every couple of months for a family function and just think he is a brat or a terrible two year old.
So how can I get them to understand 4 licensed professionals worked with Ethan for a year and a half to come to this diagnosis. They saw and evaluated his progress weekly and know him very well. How can I win them over to my team? I do not want their sympathy, I just want them to understand that my son has a special uniqueness about him. I want them to stop saying that I need to Parent my child better so he will stop throwing fits, eat better, go to bed, sleep through the night, and play with other children.
It's nice to know I am not alone but I desperately need advice and help. I work 50hrs per week and handle everything at home along with Ethan's ongoing therapy, play time and high pitch temper tantrums that last for hours. I only am able to get about 4 hours sleep a night so I am exhausted and have few places to turn. I just need to know if anyone has any suggestions for me?
Any help is greatly appreciated.