Quote From: victoriaz65Cyndi, I first want you to know that my heart deeply, deeply feels and totally empthatizes for you and your husband. I can complete and 100% relate to what you all are feeling and going thru. Your feelings are so justifyable.... and anyone with an extreme special needs child will agree.
We too have a special needs daughter. When she was 4 months old she was diagnosed with a severe and rare form of Epliepsy called Infanile Spasms. She had to have half her brain disconnected in order to keep the seizures from crossing over. She also has CP, and Autism. She is partially paralized on her left. She is almost 5, she does not speak, just started walking, severe cognitive delay, huge sensory issues and is 100% g-tube dependent. She also has a twin, who is 100% completely typical in every way.
I know the fear and the heart ache you face with your son. We too deal with her not being able to communicate to us... especially when she is not at home and at school or her hab center... fearful that she has been hurt and not be able to tell us. We so worry about her future. We do not know if she will ever be independent enough to ever live on her own. We worry where she will be when we are too old to take care of her or who will step in and take care of her for us. We were older when we became parents in our late 30's. It was a total suprise that she had this issues after they were born.
I know you are feeling guilty, overwhelmed and scared to death. I know too that just seeing you and your husband today, that you love your son with every fiber of your being in spite of all the day in and day out issues you have to deal with. It is exhausting, overwhelming and frustrating. Our daughter has ALOT of behavorial issues too. But we kind of got lucky and maybe this is where I can help.
I am not at all familar where you are from, but Sarah was able to get early interveniton. I have noticed since she is in therapies, that Sarah will not and does not respond or work with me like she does other people.
When she is at therapy, at school and at her hab center, she is really different. She works and accomplishes so much there than she does at home. Being with people trained to work with kids with special needs seem to get better responces. I was unable to watch the rest of the show, but tapped it.I did read the end of the story on line and I think that your son going to a facility will be the best thing for him and for you all. I promise you will start seeing the lignt at the end of the tunnel and you will see your son for him, not is disability. It is true what was said to "start out with a short-term inpatient facility, and then gradually mainstream back into the home and school setting"
Please do not give up, I mean emotionally, you are a wonderful, caring person Cyndi and so is your husband. I know 100000% the emotional toll and roller coaster this takes. We are just in the begining stages, but were lucky for early intervention, but we have been thru ALOT with Sarah. We so do understand the intense behavior issues, sleepless nights, the not knowing what is upsetting her or making her mad, the fears or the future, but please know, he will be happier in the right facility and I know that Dr. Phill can and will help you find the best fit. It will be hard letting go, but as I said... you will see your son as "your son" and not "your son with a disability" it will be all worth it. I have never posted anything like this before, but I just had to reach out. My heart was so deeply touched and I truly felt a real connection and understanding. I do hope you will be able to read this.
Sincerely,
Victoria
Victoria, Thanks for reaching out to me through your own personal experiences.I do love Alex very much.It breaks my heart and torments me that if Alex is hurting or has a want/need he cannot tell me.Thats is only a torment that a parent of a non-verbal child could know.Up until Alex was 3 we had service providers for speech,ot, and pt. all week long.Once Alex turned 3 those services went away.The providers come to your home and take away any equipment that was used for these therapies.Unfortunately at 3 is when the autism started setting in. Alex started slapping himself, language started regressing, he was rocking,stemming, and then started screaming for hours on end.I would sit on the couch with him and rub on his head and he would scream.I knew it was autism but the Dr's. did not believe me.Alex was 9 yrs old when an Autism center open here.The Dr. that saw Alex at the autism center could not believe that other Dr. did not see the autism signs. Alex was a typical autistic child. More autistic than Down syndrome.Our private insurance does not provide services on a continued basis.In home behavior therapy is not covered but is much needed. Alex has had things happen to him increase his difficult behaviors.One of his therapist purposely let him fall and break his leg."to teach him the consequences of falling she leg go of him".A child bit him at school and the same year he got a severe case of cellulitis of the face and head.He looked like the elephant man and his eyes swelled shut and were bruised.I had never seen anything so terrible.I spent everyday for weeks taking him to different Dr.'s trying to make sure he did not die or go blind.He has never recovered from that.His head is still lumpy.We bought a helmet to protect his head and then he started hitting himself in the eyes.Even though he got bit at school and his behavior changed and he did not want to go to school, school will not help with behavior therapies.They said he does not act like he does not want to be at school.The day after he got bit he said "No" when I said time for school.We he got to school they called an said he vomited at school.He was in summer school when he got cellulitis and again the behavior changed. I take him to an autism center here that had one speech and one ot.He has not had services since Dec because they are behind on filing insurances.Only one insurance clerk.I have been the main caretaker and trainer of Alex with very little outside help.We were out to dinner one night and as my husband was suggesting what he though Alex might like to eat I started to get upset.I said to my husband it is not fair we can choose what we want to eat but he cannot. I put Alex's communication book together to give him a voice.I wanted him to tell me what he wanted to eat,or play or watch on TV. I feel sorry for him that he gets frustrated and hits himself because he cannot say what his needs are.Dr. Phil is the only one that heard my plea for help and I am grateful that he listened. I had no where else to turn. I read all the post but cannot possibly respond to everyone.Thanks to all that have supported my husband and myself. The reason I wanted to get help for Alex is so he could always live with me.That is my goal.However as he gets bigger and stronger with the behaviors as they are now I could not handle him.I cannot afford $1,000 a week for in home behavior therapy. Thanks again for your support.
(Original Air Dare: 03/25/08) Motherhood isn't always about the good times, like baking brownies and having game night with the family. Dr. Phil talks to women who say they can’t cope with their children, and they’re running out of resources. Robyn adopted her 10-year-old daughter, Alyssa, six years ago from the Ukraine and says she actually has thoughts of sending the girl back. Robyn says that Alyssa hasn’t bonded with her and doesn’t know how to love anyone. She says her daughter screams, cries, yells and even threatened to kill herself! Robyn’s husband, Joe, can’t imagine living without his adoptive daughter and intends to stand by his commitment to the child. What's the real reason Robyn never bonded with Alyssa? Then, Cyndi says if she’d known her 12-year-old son, Alex, had autism and Down syndrome, she may not have brought him into the world. She says he hits himself, screams, grunts at the top of his lungs and wears two pairs of diapers at a time because he’s not potty trained. Her husband, Ulis, says he doesn’t find it difficult to care for Alex, but Cyndi says she’s exhausted and overwhelmed. Should the boy be institutionalized? Find out what Dr. Phil thinks. Plus, meet a mom with four kids who’s already left home twice. Now she’s scared she may leave again — this time for good. Talk about the show here.
