[mommy_to_nico]

he'll be 8 yrs old on Jan 26th. He had mile stone delays since birth. He didn't talk much till 5 1/2 i couldn't really understand him, he is getting better but still it's sometimes hard to understand him. He also didn't walk till 18 mths and at that point, he wasnt walking fully, fell down alot, i would say 20mths he got a hang of it. He didn't toliet train till 5 1/2, i tried from 2 1/2 till he finally did it, 2 weeks before kindergarden. every once in a while he has accidents. He is in speech 1x week group 2x week indivual. He's in ot group 2x a week. He doesnt recieve PT. He had PT from 2 1/2 till 5 1/2. He was elvauated by the PT there in Kindergarden and she said he didn't need it.

He does wear shoe inserts, his legs one shorter than the other. I have that as well. He has Ehlers danlos which is a genetic disorder, i have it. joint pain, translution skin ( you can see through) Deep pectus, very lax muscle tissue, chronic faitgue. he has Asthma which isn't related to EDS. He has dislocations of the arms& legs sometimes depends on spontaneous dislocations or over doing something like running, pulling away from teachers, i've made it clear for them to pick him up under his arms and no pulling hands and wrists, do not grab, take his hand and hold it. He has a special gym plan, he is limited in things can do, no running, no pulling gym type stuff, nothing that can cause dislocation. He is skinny for his age, he was on pedisure, he didn't like it. i have him on whole milk. i have to make food he likes or he wont eat it. we eat organically as much as we can afford it. We also look at sodium and calories, we've removed some of the foods that cause behavioral issues. fruit snacks ( we rarely give it to him) soda, chips etc, We most give him fruit, veggies, meats, he loves hot dogs, keibasi, he loves stir fry and chicken. He loves clams and rice, corn, snap peas, he love no msg chinese food. he wears glasses for black board at school. he gives me a hard time at home.

His behavioral issues are tantrums that last 15-30 mins, throwing himself on the floor, he's made holes in the walls, he screams, curses, it's embaressing in public we usually just finish what we are doing and go home, then he has quiet time on his bed no toys and we talk to him how that was not nice and he needs to use his words if he wants something or has something on his mind. he is very demanding and i tend to give in to what he wants sometimes, i am his main caretaker, his father is not in his life. My fiance` works and helps every other day with hw and he takes him places for father son bonding time. he accepts Nick as his own, nick calls him daddy. He also has issues at school, very distracted, wont do what teachers ask, likes to make fun of children if they are hurt. He stares away and spaces out. restless hands and legs. math is hard for him.

I went to a neurologist and they are doing a eeg brain wave and a dna array test. Blood work next weekend. He is going to a genetic's counselor b/c his pedtrician wont write anymore scripts b/c she wants a clincial diagnosis. He was diagnosed by his former peditrican and i went to a new one b/c there was stuff going on with the reciptionist & doctor. i didn't feel comfortable. He need his new shoe inserts. I called just waiting to hear back. He has a pulmonary specialist and he goes every 3 months, he's on an inhaler with a spacer 2x a day b/c of his asthma. he's had since 2 1/2 yrs old.

I am going through this alone i feel, my fiance`is always working and i cried yesterday, i wish he'd come with me for support emotional. his boss wont let him take off any time, even though he gets sick time and 2 week vacation a yr. he never wants to take off. but if there's a game he'll do a half day. i don't know how to get him to come with me without screaming or putting a guilt trip b.c he's not there and i get pretty worked up about this stuff, i just want him to go into work and meet me at 10am and go back to work. we have a medical cab. i need him with me. i am tired of doing this alone. we are a family a team. plus we are ttc and yesterday we had a talk and i told him how are we going to have another child if you arent there for me with the medical appts, they are important. we know the chances for EDS and everything else, we want the chance to have a child, he wants to have a child of his own and i would love to give him one, we have fertility issues and i wish i had someone who understands what i'm going through my friends don't their children aren't disabled and most of my friends don't have children.

[Trinity82]

Oh my goodness, I am so sorry you are going through this alone... ( I know not alone but feeling like it is pretty much the same thing) I don't have any suggestions but wanted to give a big ((((((((((((HUG)))))))))))) and hope that you get some answers.