Funny. I was absolutely convinced my reality check had already occurred. Now I am thinking I may have missed the signs or misinterpreted them anyway.
Going back a little to show a clearer picture. Burrito arrived at 5 months old. failure to thrive. he was like a newborn baby, only disconnected with the world. he was so lethargic and glassy eyed. no smiles were shared. no response to sound or touch or sight. he had hit no mile stones thus far. he arrived with intense services in place. OT PT specialists so many doctors I had to buy a book to keep track of who we needed to see who was coming where we were going. he had issues with his head first they thought hydrocephaly then ruled it out finally determined he had an usually large increase of space, empty space in the sub-arachnoid region of his skull. (the area between the brain and interior skull. this increased risk of brain injury so we added more services and a protective helmet. almost right away we began to see progress. little glimmers of hope that a baby boy was inside of that glassy eyed head. I studied failure to thrive, pulled out all the sensory training I had done for Sam, studied attachment and worked. worked hard day and night to turn this baby around. tests. services. interventions. therapies. going out for services bringing professionals in for services. documenting details. learning his little quirks and celebrating his progress. I can not count the number of professionals involved who would see him at 1 month post placement 4 months 6 months a year and even now. the response is always the same. "This can't be the same baby/child!" His overall prognosis went from grim to hopeful within a year. yes we still had obstacles to overcome. yes we still had progress to be made. but no one could deny the amazing leaps of progress he had achieved in such a short amount of time. When you go from failing to thrive disconnected smaller than a newborn baby at 5 months old to cooing and interacting and smiling it is easy to miss the new warning signs that something just may be amiss. It becomes easy to explain away 'little things' that may actually be 'bigger things". I am usually a take it head on kind of girl. give me the facts and a solution and a plan and I will take off running. we had bumps in the road that seemed difficult to manage and overcome but I constantly had this reference in the crevices of my mind of who he WAS and how far he had already come that it was easy to explain things away and ignore them.
it finally hit me one day that things may not be as great super and wonderful as I had convinced myself. I mean looking around me i saw other mothers with same-aged children and they didn't deal with intense tantrums that can't be difused. or the screaming...oh the screaming for hours. hair pulling. my poor baby is 4 years old and never had a haircut. once we came close to needing one he had the loveliest curls and then began pulling again and has not stopped.the eating things like rocks and sucking on fences. not typical I KNOW but ... night terrors never ever not one time sleeping through the night. obsessions with small number of activities. such as Cars from the movie Cars. veggie tales movies and songs. action figures from toy story. baseball. baseball. can't forget baseball. his amazing talent for escaping from ANYWHERE. you can't turn your back for one second. He can unlock locked doors and deadbolts, he can climb fences he can weasel his way out of anywhere any time the notion hits him. and fear? what is that? he is not afraid of anything. curious yes! afraid not so much! the strangest things calm him and set him off. too many people talking at once or someone talking while the TV is on or people laughing as a collected group. all make him crazy he will put his hands tight around his ears and scream this high pitched scream that sounds more like an animal barking than a child squealing. one day we stumbled upon a magic remedy for long drawn out screaming tiresome tantrums that occur anywhere and everywhere. quite simple and yet we never thought of trying before. MUSIC not just any music but crazy rock loud and yes, even screaming music. Queen is a favorite of his he loves Fat Bottomed Girl and We will Rock You. Who knew!? A whole new world opened to me that day. Dominique spent an entire day experimenting with various music and its effects on Burrito. The end result is a CD that is nearly 3 hours long of music that soothes him a progression from the hardest of hard to classical piano at the end. I tell you what. I never leave home without it! I can now successfully go to a store with Burrito and NOT have a screaming melt down that always resulted in nasty whispers and stares from judgmental people. I made the mistake a few time of not having the IPod or CD with me and the tantrum that ensued and grew to epic proportions was enough to teach me a hard lesson! I will gladly sing Fat Bottomed Girl at the top of my off key out of tuned voice if it will bring peace to his little world. We have all kinds of little tricks we have employed over the last 2 years to keep his little world spinning just so.The funny thing is, I never ever entertained the notion that a doctor would say Autism. Good golly I was a house parent in a home for autistic children when I was in my 20's I knew what Autism was and this? My Burrito was not that....was he?? He didn't have the hand flapping rocking or self stimming behaviors at least not to the radical degree I saw way back when....he talks. he snuggles. he is bonded to me. There is something going on but not that.....so I finally followed recommendations and had him evaluated. Lo and behold...he landed his sweet little quirky self on the spectrum. with Pica and Tricholtilomania. (eating inappropriate things and compulsive hair-pulling). Even after the feed back session with the doctor and all her 24 recommendations I still was not convinced. I was still stuck in the place of looking back at all his progress. in 4 short years he has accomplished a million things more than ever thought. I see his life in terms of progress beyond expectation and not in terms of what is actually happening right now. So I was doing a HUGE disservice to my child. I was so blinded by that leaps of progress that I didn't hear the alarms that have been sounding warning us that something is not quite right. I have spent so much time accommodating him that I never realized I could be hurting him too. So I began to study. read. ask questions. search and seek out other parents who parent autistic children and what I am learning and reading and hearing frightens me just a tad. I have been FEEDING his compulsions and quirks with all my accommodating. and what i see lying just over the horizon of the next few years is a mountain I am not sure I will be able to climb. I need to get myself in check and educate myself on how to help my son without over indulging his quirks and obsessions. I need to be trained on how to parent all over again. These quirks are one thing to look at and deal with at 4 years old. But what will happen when he is 9? What will the rages and tantrums look like then? will fat bottom girl still soothe his rage? So please if you witness me struggling in a public forum with a screaming little man don't whisper and snicker about what a brat he is and how you can not believe he would say such inappropriate things at such a young age. don't pass judgement upon my poor parenting and say that I just need to spank him because it is not that simple and there is no magic cure. he picks up on all the most inappropriate things he hears he will not hesitate to announce in the check out line at the local grocery store that he LOVES babooms (boobies) nice! or pop off with an idiot or stupid he is not a naughty little boy. He is Autistic and his mom is trying very hard to figure out how to parent him and help him the best way she can. so the next time you see me or another frazzled mom struggling through a traumatic trip in the store. offer to help unload her cart. offer to push the cart out of the way while she is holding the raging child. smile at her. say a silent prayer. but whatever you do do not judge her. she is likely carrying a load you could not understand...more to come on our reality check as reality checks me!