I am sorry this is so long I am distressed and probably alienating many of you from reading let alone answering. But please if you can hear this cry for help I am really in need.
I am a namechanger. I am sure some of you will recognise me based on my DS's symptoms if you do PLEASE do not out me I am here to get help, I am honestly so beyond depressed and I am desperate. I can not enter in to MN politics I just want some help. I am losing my grip on stability.
This is what I need from you, PLEASE please help me if you can. I need you to read what my DS is like and tell me what the hell do you think is wrong with him. I am in the referral system - GP referred me to a specialist in this sort of thing, the hospital sent me to a different Dr in a quest to fulfill their quota, that Dr promptly said she could not help and that I had to see original specialist and would be re-referred. Then a month later still waiting for that appointment I chased it up as its got much worse and they fucking never re-referred us in the first place they lost the damn referral and had us down as a closed case. So as of yesterday I was re-referred again. In the meantime I am unravelling and my DS is suffering, I have no support, nothing to work towards and all I can think is I am a total failure as a mother even though I dedicate my entire life to him.
Please please please if you recognise these symptoms tell me what they sound like so I can at least cling to something while I wait and try to work out a better way of handling him than what I currently have. I am not asking you to diagnose him I know you cant but just as one mother to another tell me what you think is wrong before I go mad.
He is 2.6 years old. These things have been going on in one form or another for a long time. He is very very bright with a huge vocabulary. HV says he is in the top 2% of development and language wise on par with a 4 or 5 year old. I am just telling you the facts as I know them so you get a picture.
- he repeats himself constantly. CONSTANTLY. He will say something relentlessly - he said something today around 50 times before I got him to stop. If you parrot back to him what he has said he will usually stop saying it but for gods sake I can not do that constantly. If I say "I heard you" he still says it. If I answer the question, if indeed it is a question and not a statement, he usually still says it. This is beyond normal toddler repitition. Its like a record on loop.
- He will talk to you and repeat himself endlessly even if you are not near him. I can usually hear him but I am possibly on the other side of the house doing something and he knows I am not there with him and he will still say it expecting me to answer/parrot back to him. He also has no comprehension of you being busy or already talking to someone. No matter what he just stands there and repeats himself.
- He is my oppressively my shadow. If I walk to the kitchen to get a drink he is under my feet. If I go anywhere at all he follows me NO MATTER WHAT. He asks me what I am doing every few minutes even if I am sitting with him on my lap reading to him.
- He gets violent and has a melt down when opposed at all. Everything has to be in an exact order, procedure etc and if its slightly off he loses it. Today he hit me in the face when I got on the phone - I asked him if it was an accident he said "no I did it on purpose. I am angry because you are on the phone" ok I appreciate the honesty but he is a fucking tyrant.
- He can not cope with negative emotions. If another child cries he screams, throws whatever he is holding and sobs til I remove him from the situation. If he percieves anger, even if there actually is none but he misunderstands the tone of voice, he hits whoever he feels is to blame.
- He is OCD like with order, lining things up, certain foods, certain bowls etc.
- He hates bright light. Every day we have to close curtains because the light hurts his eyes. He doesnt like loud noises. He wont touch certain fabrics.
- If he does something and I say do not do that again he does it. Then when I take said object away he freaks out.
- he is totally helpless. he has to have me pick something up for him. he needs me to move a car one inch to the left. whatever. I usually refuse or pick and choose my battles with him. when I refuse he melts down.
10. I do not spoil him. I am firm with him. I do not pander. But I cant control him. My GP said these things are hardwired into his brain so punishing isnt the answer. That is also my belief so I am trying to walk the line between compassion and pandering.
11. he freaks out if the wrong people sit on his bed etc or touch him
12. he is VERY emotional and sweet and kind. he is very vulnerable to getting his feelings hurt and blaming himself for everything that goes wrong.
13. he constantly asks if I and other people are happy. So much so I wish he wouldnt be so bothered about it.
14. When someone is mean to him he rewrites the history and changes it all to "nice"
15. He is very imaginative & creative. He totally uses every facial expressions and is very expressive.
16. he is openly and totally defiant of almost every instruction I give him.
17. he will cry and ask for help with something as soon as I go to help he screams at me not to help then it starts all over again.
I am afraid and flinch around him because he hits me so much. He never looks where he is walking or running or takes any care about what effect his body is having on his environment except on very calm, good days.
he has a brilliant memory and remembers shocking things like details of a day a year ago (not an important day just a regular at home day), the names of planets in solar system and can identify them with pictures, memorises poems, can read some etc
I feel so guilty. I have taken the time to sit down and write this and he is so unhappy. But I am going mad. I just cant cope anymore. Every time I do anything at all that does not involve him he cant cope and I feel guilty.
I dont know how to make you understand this but I dont spoil him. I do encourage him to have all sorts of experiences besides these. I spend A LOT of quality time with him. I am reasonable. I put limits on him. But he is totally and utterly untouchable and I am lost.
I am reading this back and I know it looks like a dicsipline issue but you have to trust me it isnt. Or at least it isnt MAJORLY. There is something wrong with him. He is not normal he isnt like other toddlers he isnt happy in all these times and neither are we. He can freak out over a little thing gone wrong or a little bit of kind discipline and it will last an hour and he will be rocking back and forth in the bathtub in the end.
HV and GP who have known him since birth and are both very good believe he has some medically caused problem but are waiting for the specialist to DX.