Denying a Disability

Katheen - posted on 06/28/2014 ( 4 moms have responded )

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I've posted this story once with little feedback.... Please know this is a cry for help, I'm scared for this child's future.
This is destroying our relationship and ultimately hurting the child. I met my man nearly a year and a half ago, my daughter (who I'll refer to as Rina) was then nearly 5 and his son (we'll refer to as Jay) was nearly 3 and a half. It was obvious from the very beginning Jay was behind and it didn't take long before it became a concern. Though it took awhile before working up the courage to discuss this matter, needless to say Jay's parents were clearly in denial. Jay was born prematurely, his mother was losing embiotic fluid and he was fighting to survive. After an emergency C-Section, barely 7months into the pregnancy, Jay had a slew of problems due to the fact he hadn't developed properly and had obviously suffered some amount of brain damage. He spent the first 2 months in the hospital, and the first 3 years of his life were spent with weekly visits with a team of specialists. His parents knew he was different, he never sat up or crawled till nearly 2 years of age, he didn't start babbling like babies do until nearly 3 and shortly there after he started walking, this is where the trouble starts. Jay's parents believed once he started talking very little and walking a little he no longer needed his team of specialists and they stopped taking him. When I met Jay, he could not communicate more then a few words here and there but often grunted and pointed at things and he would repeat himself over and over and over. He refused to use the pottie, drank from a bottle and was up 3-4times a night. Not to mention he refused to play nicely with Rina, often hitting her for touching his toys or for her getting attention from his father. He would kick, hit, scream, cry and throw things just because his father would sit by me or kiss me, he absolutely needed to be the centre of attention, which I can understand to an extent. But my child grows tired of playing with him becausr of how far behind he is, she often can't understand him. His father allowed him to run the house, he never had a bedtime or a timeout, he never had to eat a meal or clean up his toys.. He was out of control. It took time and convincing but I helped his father potty train him, I devised the plan to rid the house of baby bottles, and began working on how to best help Jay in the long run, (waiting lists for early intervention, hearing and speech, to name a couple).. But his father still believed Jay didn't need help. By four years of age, Jay finally had an MRI. He was finally diagonosed with Cerebral Palsy, and it was then they were shown the extent of the brain damage. His entire brain was effected, and covered in scar tissue. Still this does not worry his parents. Jay is now four and a half, he was supposed to start school this fall but I suggested holding him back. Jay can't say his ABC's, he can't write his name or draw a line, circle or sqaure. He does not know his full name, where he lives and often does not understand the simpliest instructions. He still has accidents frequently, often he'll pee on his bed during time outs or pee in his chair at dinner even after using the washroom before. People outside immediate family, (eg; his mom, dad, grandparents and myself) cannot understand him, he talks in two to four word sentences but will try to get away with talking as little as possible. He still repeats himself over and over, and little is done to correct his errors. He is seemingly in his own world, talking his own language.It is killing me watching him struggle to meet milestones years after he should be achieving them. I love this child and have tried my best to get him help but his own family believes he's fine and will one day just catch up and I should try and ignore it.I'm a mom, and we are raising our children together... How do I ignore a child who needs help. They truly believe Jay is just a few short months behind. He can't go to the bathroom alone, he can't dress himself, he doesn't play with the other children, and the more I try to help the more my man is angered because he believes Jay doesn't need help

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Ev - posted on 06/28/2014

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And you can not change the world either if people are not willing to listen and try to make changes themselves. I feel for this boy just by reading this. I know from your post you care deeply for him and what happens why not being able to abide what his parents chose not to believe. Unfortunately, when a child is born that is behind their peers with a delay or a disability, the parents are in a bubble of denial. They don't want to think their precious bundle is behind the other kids the same ages. If you entreaties to get him help once again have gone unheard, there is not much more you can do. If you feel there is a danger in their denial and getting him the proper help he needs you can call family services. They could step in and help the family to see what needs done. At the same time if you are not married to the man, it makes it harder because sometimes the family might still think of you as an outsider. If you feel you can do no more, are you sure you want a relationship with a man who keeps on denying things and gets angry because you have tried to discuss this and does not want to do a thing? Are you sure you want to keep your daughter in a home that is under this stress? It might be time to address what is in it for you and your daughter as well.

Mia - posted on 06/28/2014

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Hi Kathleen, it sounds like the parents of this little boy don't understand the complexities of a neural defect such as cerebral palsy. I am trained as a Psychiatrist (yet my baby even mind boggles me as I can never find answers to my problems) so I hope I can help yours.

If the child has had the appropriate scans and doctors have concluded that he has cerebral palsy whether it be mild or severe there are many treatments and psychological assessments the boy will need to go through and you are very lucky it's 2014 and not 1974 hen my cousin was diagnosed with this.

There are medications the child can have, especially if he has any seizures to help "numb" the brain so they can think more fluidly and clearly, plus the child will need to have physiotherapy to assist with the muscles as they are not able to usually fully extend like ours; they need massage and manipulative therapy to assist the muscles into walking, standing etc

To simply have his parents in denial that there is something severely wrong with the boy is putting his life at risk. I would go as far to say that there could be other neurological issues with the child especially with the language and people skills - has he been tested for Aspergers, Autism? These can go with Cerebral Palsy and mimic so diagnosis is difficult.

I would find the Cerebral Palsy Association in your country (if you are in Australia I can assist you here with one I know) who are able usually to come to the home and talk to you about the childs neurological problems and even visiting a psychologist with both parents (I know that could be hard) may help them understand that they are living in denial - we all want the best for our children and all can't imagine how hard it must be yet they need to face the facts, and putting him in a school now would immediately result in the child being taken out of care by the school as they would assess his situation. If a child has cerebral palsy, they need special assistance that most schools cannot help with.

Most are not able to live a "normal life" as an example, my cousin is now 40 and has never walked, yet can speak and maintain a conversation yet cannot work or just go to the shops like us. She needs a full time carer to care for her and look after her.

4 Comments

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Katheen - posted on 07/02/2014

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Lisa, I'm not his mother and have fought tooth and nail to convince his parents he needs help and attention needs to be paid to the areas where he's struggling. My anxiety is out of control living like this. I wish someone besides me was there to tell them the redflags are real.

Evelyn, I'm at the point where its looking like I should walk away because you're right its not fair for my daughter to bare witness to this. She knows something is off about Jay and my man all too often only has the patience for his own child, my own nephew can't be here whenhis son is here because he can't handle how poorly he behaves when he's. not the center of his father's attention. I love them, I've worked so hard to help them both all while raising my own child who's fatherless.. I'm depressed and stressed. I need this advice, the brutal truth, because I'm lost.

Mia, we live in Canada, where we should have so much help but I don't think when my man and Jay's mother meet with doctors, that they are being entirely forthcoming, I believe they make him sound better then he is and down play his disabilities. His grandmother believes I am jealous of Jay and that's why I am constantly trying to discuss his disabilities and researching everything I can.. because if there is somethin wrong and I am right.. my man will love me more then his child? I'm dealing with a storm of denail and my man constantly talks about how stupid his doctor appointments are, how pointless they are his son isn't gaining anything from it because most tests and appointments its 50/50 whether Jay will copporate or not.
I hear him using words incorrectly or not even saying words and his father will not correct him or make him say the sentence properly he'll just say what he thinks he said, answer and continue on. The dentists told him to do some excerises with his teeth and mouth because of his disability and the prolonged use of the bottle and he NEVER has. He's supposed to do stretches and excersises with him daily which he does a couple on the bus to daycare but jay doesn't like doing them so hes not going to force him. He truly believes he's fins.

Lisa - posted on 06/28/2014

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If he's been diagnosed with CP, he should be receiving regular therapy. Early intervention is so important! Some of the symptoms you describe sound like autism. Sensory integration therapy, occupational and speech therapy, would help a great deal with both conditions. Having an autistic son myself, I understand the desire to want to believe that he's "just a little behind", but that mind-set is not doing little Jay any favors. Denying there is a problem, in order to minimize your own discomfort and embarrasment, is cheating him out of his full potential. Please be adults, and get him the help he needs. Precious time has already been wasted! I understand how difficult it is to let go of the hopes and dreams you had for your son, but it is your job as his parents to give him the best possible chance in life!

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