welcome to my world

Dori - posted on 12/19/2011

@ Candance i think your son and mine could be twins in every aspect symptoms are identical i think the worst one we went thru was Oliver was a bad smearer and with that i mean poop all over every where for a few months thankfully we are in canada and our health care covers all testing and dx i dont know how in the states you guys handle the stress and evrything that goes with this dx ontop the finiancial side good luck to you

Katie - posted on 12/19/2011

I asked my son's teacher to meet me half way. They are stopping potty training. He just doesn't care about it right now so they are stopping for months. And then going to see how he does. This weekend he used the bathroom at home 5 times!not in a row but we were HAPPY. So,I asked the teacher since they decided to stop the potty training if they can come and get him at 8:25am school starts at 8:30am they said NO. I have a daughter who goes to school and they wanted me to bring him at 8:30 am . Which would make my daughter late everyday for school. I said NO and that they should come at 8:25. They are there anyway and there at least 2 teachers who come down to get their kids off the bus and Ryan is the last one. So, they are not coming at 8:25 which pisses (SORRY) me off. I told the teacher in tears that we are doing everything that they are at home and why can't they help me out with just one thing. They say he has to wait 10 minutes before they are ready and they dont want me to bring him upstairs at all. And he gets bored sitting and waiting for them (I stay with him). So,if you are there early then came and get him early. Instead of making my daughter late for school and him too. The teacher said she total understood me . I'm like REALLY you don't understand at all. And I asked them at least 3 times this winter to put a hat on his head a simply thing to ask he gets a lot of ear infections in the winter and NO hats. I put an extra one in the backpack in case they loose it.And he has an earinfection.I hate fighting them we have a ABA that comes to the house I'm going to mention this to her.

Tania - posted on 12/16/2011

i know exactly how you feel i have two boys both aspergers ..high funtioning autism ocd and tourettes ...oh and i forgot all the sensory issues tags button foods etc etc the list goes on so yes i can relate ....i also had one of those days today i felt like i was going to explode and just give up ...i suppose i had my own meltdown ....i ok now and ready for my next battle whenever it may come ..usually daily lol oh well i say to myself tomrrow is a new day ...good luck ....oh you know what we all deserve a medal for the job we do

Candace - posted on 12/15/2011

I know my life isn't the worst b ut it's really hard sometimes. I have a 3 yr old son that I love more than life itself but he has a speech and developmental delay. His PCP thinks that its Autism and so do I. I did everything that I was supposed to do when I was pregnant, eating right and avoiding anything that could possibly affect my unborn child. He came out perfect after 30 hrs of labor and an emergency C-Section. He progressed with no issues at all for about the first 18 months ans shortly after that I noticed that he was starting to regress in his speech. Then I noticed that he seemed to not know his name becuase when I called his name he acted as if He couldn't hear me. At his 2 yr check up I talked to his PCP and she referrred me to Early Intervention and we also has an audiologist check his hearing. He doesn't have a hearing problem at all he is actually just the opposite. He hears everything, even things that I don't like flourescent lighting. His heasring is so sensitive that he sleeps with music playing and a fan just so that he can't hear anything during the night. We also had some genetic testing and an EEG done which came back normal but the office filed the wrong insurance as his primary so my husband's insurance denied the claim. Where am I supposed to get $3600 for bloodwork. Anyway they are going to resubmit the claim correctly this time I guess. My insurance is primary and my husband's is secondary. Anyway back to my son, he is on a very limited diet because of his sensitivity to textures and colors, not to mention we are casein free. We live in an area where casein free foods are not readily available. Did I mention that he doesn't sleep much at night even when he doesn't get a nap during the day. At night he sleeps for about three hrs and then he is up. Some nights he never settles down to sleep and others he fights all night with night terrors. We have been on the waiting list for the developmental specialist since May and still can't get in until February. I am at my wits end. On top of all of this my husband's family does not understand what I am going thru at all. They feel that there isn't anything wrong with him and that I should make him eat veggies and be quiet in church. I can't do it all and they make me feel like I am a bad mother, this is the worse time of the yr for me because this is when we have to see them and they make their comments and try to corner me, of course when my husband isn't around. Did I mention that I work full time also, I am a supervisor for a busy Optometrist office which is very stressful sometimes I feel like I'm going to explode but we can't affrod for me to be at home with him right now. Why is this happening to me, my son, my family. This is the first time in either of our families that anything like this has happened. I have a great husband but he works two jobs so that we can afford the therapies for our son which leaves my at home alone with our son in the evenings. After I have worked all day I come home to our son and do all the things that a stay at home mom would do minus the sleep at night. Anyone know what I mean? Help! I feel like I may just give up.

Tania - posted on 12/14/2011

hi katie i hear you techers these days think they know better than s parents expecially when we have a child with special needs ...come spend a day in my life i feel like telling them ...they wouldnt last ..i know its hard and as a parent we should be taken alot more seriously ...but just think to yourself they wouldnt have a clue you know what your doing and well who cares what anyone thinks i say stuff them

Sharlene - posted on 12/13/2011

Hi Tania ,I dont need to Vent ,Just saying ,Hey and whats up LOL

Katie - posted on 12/13/2011

HI! I have one of those days when Calgon won't help. Ryan woke up in a good mood ate breakfast walked to school had a fit on the way . Screaming in school,kids looking at him,kicked off his shoes, yelling. I left him with the teachers with tears in my eyes. They call asking me to bring him in later which means my daughter would be late for school. HE wont sleep in his bed all night long dont know why sometimes he will stay in there for 4 hours and come out and sleep on the couch until I have to get him up. He had to go to the lab for a blood test for lead posioning on the 7th. The teachers wont listen to us wrote notes to them etc. I think his asthma is acting up trying to be serious with the teachers and they think they know more than us and treat us like kids.

Tania - posted on 12/12/2011

well its almost christmas ...and back to the doctors i had to go ...my son says hes seeing heads come out the walls and cannot sleep ...i thought it was always night terrors ...he said he didnt want to tell me because he didnt want to go back to psycholigist ...well they have put him on meds to stop the hullusinations ....they say bipolor ....say what ...aspergers ocd adhd and now bipolor ...seeing heads come out the wall ...my god so stressed ..and the meds welll looked them up and well no good reports ....really dont know what to do ....stressed

Sharlene - posted on 12/02/2011

Hi ,tania , Im back with a clearer and minded head ,cheers

Holly - posted on 12/01/2011

oh, Melissa...I'm right there with you. And I also find myself in a similar situation where this pint-sized darling controls our household at times. Honestly, in my head I'm in full control of the home...but really, we all know he is the puppet master still. I long for the conversation where it's based off pretending about some things because it's what should be happening. I know that makes little sense, typing one handed while gluing together a paper duck for the second time today. (ohpicku is duckie I discovered finally, thank you God!) What I meant is I know admitting my son runs the show is NOT good and it is not what you will read in any of the great living/dealing/how-to autism books out there (many of which I truly love and try to implement into my life) but the majority of the time it is just true. I know we've not had the diagnosis long, we haven't even seen the behaviorist yet (lovely 3 more month waiting list) but I have days where it's easier for me right now to give in a little than get yelled at one more time in the day. Not ideal, not what I want but sometimes what I have to do for me to get through a day. I agree with the books, it is only making the behavior worse, but sometimes it makes it easier for my state of being. It's not always that way but in the honest aspect, it's that way more often than I am proud of. My hopes are to get more and more adjusted and educated and supported so that shifts the opposite direction. Hang in there, of course we love our kids...because we are here daily doing this with little appreciation or reward but instead out of unconditional love and that occasional moment when the hard work gets recognized by a dr or a new milestone is achieved :-) and what we say around here OFTEN...you are stronger than you seem, braver than you believe and smarter than you think!

Melissa - posted on 12/01/2011

Hi Holly, you just made my morning. I got a good laugh out of your post. My son is driving me more nuts than usual the last couple of weeks! Sometimes I just have to sit there and laugh about it, other times I just want to run away! Right now Jordan is stapling EVERYTHING together! There is not a piece of paper in this house that has not been stapled, lol. I dare not take the stapler away from him though. Two days ago he was looking for his art easel, which I had taken to goodwill and he told me I had to go buy one right then and there. He started having his meltdown until I finally had to make one out of two signs and a cardboard box. He was ok with it thank goodness. He is dragging it around with him everywhere, along with the stapler! He is fussing so much about his food. He has texture issues and I have to fix several things before he finally eats something and about the time I walk away from the table, he is yelling at me to warm it up! It has to be a certain tempurature or he will throw it. I wish he would just eat without smelling every bite and fully investigating it! There seem to be lots more meltdowns lately, about everything. I am going to catch heck from him this afternoon because I did not drop off some Gripz at school for him for lunch today. We ran out last night and we talked about Gripz for about three hours. It seems like all I do is try to please him and I am loosing my mind. He is the boss and I am living in his crazy world and no one seems to understand what I am going through, they have normal kids. My son has to be on a schedule and we have to go by his rules. I am glad to see that there are indeed other moms going through similar things. I love my special son so I pray that God gives me the strength to make it through another day here in Jordan's world.

Holly - posted on 12/01/2011

Hi, I haven't posted before now...but wanted to thank you for this thread specifically. I have a difficult time venting and just reading the above posts made my already trying morning a little lighter. Not that I enjoy hearing others are having difficulties but that I'm not alone with the similar frustrations. We're still adjusting to the diagnosis but the major feelings have mellowed and it's the day-to-day frustrations that have built slightly in me that are mentioned above. I've tried to just "ugh" vent with a friend or two and they become very uncomfortable and begin reminding me how special and wonderful my son (3 1/2 on spectrum) is and I need to just look at it all as a gift, blah, blah....Yes, he is wonderful, yes, he is truly a blessing that I love dearly, but when I've had 2 hrs of sleep because he kept waking up to look for "ohpiku" which I have no clue what that is or where & have tried everything to figure out this new word and then wake up to him dumping his breakfast on the floor bc his gloves weren't on before he I handed him his spoon...well it's these moments that I also want to run in the backyard and swear (with the glass of wine too). So I appreciate finding someplace where it is ok to be stressed and not feel judged for not being the "perfect" special needs parent that is human. My day is already better.

Sharlene - posted on 11/17/2011

Hi Tania , How's it going , James is still repeating him self and emily won't stop bashing him , Im stressed out bad today, I feel like going in the backyard and swearing from the top of my lungs , LOL [I think you know what im going to say] LMAO, Talk soon darls

Sharlene - posted on 11/17/2011

Lois, Keep on there back until something get's done.Cheers

Lois - posted on 11/16/2011

I had my son evaluated for electronics for some class work and some homework. He was evaluated end of the school year June. It is now november and he still does not have them. I was told the techs are working on it but they have been busy. What do I do without looking like a creep?

Tania - posted on 11/15/2011

well to start my day off i stuggled with my son and his sensory issues and it well it had taken about 40 min just to get the right shoes and socks on ...then my other son had a dentist appointment ( he has aspergers ) at 8.30 and well we didnt get to see dentist untill 8.45 so he had a full blown meldown ....but they said ...no but they said screaming yelling you are just lying ....finally home and have 2 hours untill school pick up and im going to bed for a sleep .....with noone around just a nice sleep yayyyyyyy.

Melissa - posted on 11/15/2011

It is nice to vent because my life sure is stressful! My son, Jordan, also repeats things all day long. Plus I feel like I am talking the wall because he sure is not doing what I ask him to do. The worst thing is that he is so loud, especially when he is spinning in his circles. Jordan seems to be spinning more and has gotten so much louder. He recites the alphabet, things he learned at school that day, or just makes weird noises while he is spinning. Sometimes I just have to put in my earbuds and listen to music to drown him out. Bedtime is stressing me out, too. Jordan takes way too long to fall asleep at night. By the time I get him to sleep I am so exhausted I fall asleep.

Sharlene - posted on 11/15/2011

I've had one of those days that pee me off 1/ James just keeps repeating everything and I just feel like pulling my bloody hair out that the one that has Autstim,emily ground for a week another prinicpal letter so of recess and lunch duty and a 7 yr old attute, chole was at childrens hositpal really hot and tiring went for another check up with eyy doctor and friday we saw Nuro bad news, The only child that did not give me grief was callum believe it or not, So tonight Im on circle of moms and a glass of wine ,Cheers