I came from an upbringing where you handle your business and leave it to yourself. I won't blame anyone or anything like that but I'll simply say that's not a helpful way to be when you've been dealt major blows that caused deep depression and then had children that needed unconventional therapies. Mikey and I had all the major genetic testing once Ireland was born with the diaphragmatic hernia where basically we were told all future children would 99.9999999% free of any problems. Let me tell you, genetics is awesome and helpful but it is not a predictor of all.
Connor being born with Pierre Robin and it affecting more systems than simply a physical fix...we ended up with Early Intervention in our home several times a week for various therapies from feeding to learning how to sit up. In time, and after too many surgeries, his therapies changed to what basically amounts to listening and speaking...or language and communication. With Sawyer being so close in age, he joined in those therapy session in our home and sooner or later, one of the therapists suggested that Sawyer may need to look into his own intervention. .....from my unprofessional and totally haven't looked this all up-knowledge, Early Intervention (EI) is ran by school districts to help children with delays and special needs. They're an awesome and income (and medical needs/bills) based service that with our (I believe) good middle class income, payed all of about $20 for each month. ......EI works with kids until they're 3 and then enters them in the preschool that has special education services in your area at that point. Before the age of 3, both boys had various testing for cognitive skills and also various assesments to help show what sort of needs they had before entering the school setting. Both have shown various delays and therefore entered the Individualized Education Program (IEP) process.....for now, I'm just defining the IEP as the document that sort of bullet points the special education services your child needs. It states goals for your child and pinpoints any services the school district will provide. From what I understand, Utah is one of the best states for helping parents with these but as in all states, it's not a perfect system.
Anywho, armed with many books, a great pediatrician, wonderful teachers and many therapists for speech, occupational and behavioral therapies.....both boys have done quite well. That said, Sawyer is entering kindergarten this fall and the latest IEP meeting left me a bit upset. Within 5 minutes, my normally controlled and stoic mommy understanding was in tears. .......good teachers see things that we don't see at home. Sawyer is quirky. He has little issues with sensitivities and horrible fits if things aren't going his way. His conversation skills are horrible though he's highly intelligent with numbers or little facts. He knows his ABC's and can count to 100. He can write his name and meets all the goals for starting kindergarten......but there are gaps. He's a social butterfly and looks you in your eyes. He walked and talked at normal times. His growth is off the charts though his appetite is picky as all get out. He's polite. ......he's a model kid in so many ways.......but ask him to enter a room full of people and you may find him under tables or ask him to be a ring bearer and next thing you know he's ran back in the house and in a closet, if he thinks something is too loud, he's putting his hands to his ears or screaming outside of a hockey ring because a buzzer went off, ask him to eat a few bites of veggies and we're entering a full meltdown that doesn't stop for a good 10 to 20 minutes....or how about read him a story and ask what happened, you'll get some bullet type words but not a story; ask how his day went and you'll get a bizarre rambling of whatever interests him in that moment; ask his phone number and you'll get the answer; he can spell his name, he knows he's 5; let him know that you'll see his friend today after lunch and he'll get upset every 10 minutes that he wants to see his friend (you can explain a gazillion times but he's not getting it). .............anywho, tons of scenarios and new scenes provided in the form of an IEP and a teacher stating that Sawyer is very much ready for kindergarten but that a special education class may do him more good than a standard class gets your head reeling when you think you've been doing everything possible to set your kiddos up for success. .........Now it's time to move on to simply telling the pediatrician you feel you're doing it all right and you feel like diagnosing kids at such a young age could alter or hurt their future. There isn't a good mom out there that isn't worried about her children's future....if you didn't know before now, an educational diagnosis simply stays in files and does not follow a child's future outside of school....a medical diagnosis follows for a lifetime. Feel that impact for a minute. ........anywho, I'm not sure where or why or when I got scared of a diagnosis for anything stating my children have delays or Autism or what-have-you but obviously I've had a distaste for ribbons and awareness and puzzle pieces. Cut me some slack seeing how it's safe to say things have not always been easy and everyone you know has an opinion. ..........but, I finally said entering school with problems makes it necessary to have a proper diagnosis so I know my children are getting their truest needs met and I'm setting them up for success. I only was ready for Sawyer to go for this type testing but after learning so much after one professional assessment, I'll be emailing the pediatrician to go ahead and set up testing for Connor (his issues are similar and yet much is different).
.........okay, so hopefully this is easy to follow. Basically the pediatrician had papers sent to me that I had to fill out and send off to the University of Utah and Department of Health (it looks like the office is sort of a joint office between the two). In the past, mainly through Early Intervention, I flat out was filling these pages and pages of bubble sheet type tests that spilled out results of "what was wrong" with you little one. This time, the paperwork simply asked generic questions of family health, birth history, sibling history, and there were questions on what I wanted to learn about my son and what I felt was wrong. It was about 5 pages and sometimes I felt spacey on how I described things....for instance, I remember stating that we often hear that Sawyer has autism but I didn't think so because he was so social and I felt his issues were more with language. .......so, I mail this all off along with past tests, scores, reports and his latest IEP and a few weeks later get a call that a "team" has evaluated his packet of information and they've decided he needs a hearing test, a speech evaluation and a visit with the psychologist. The psychologist is booked out for the next nine months so he'll be put on a wait list for the first available appointment but can get his other appointments right away.
So enter the appointment. We're told it'll be a 30 minute hearing eval and then a 2 hour speech assessment. Ears are great...flying colors. Sawyer is so polite and says his pleases and thank yous and the audiologist is impressed. Thank you. We meet 2 ladies for the speech assessment. They take time to play with Sawyer for a few minutes and then we're off to testing. I'm told to basically observe and zip it....they did this nicely. .......There was a variety of play type questions and then the standard flip book with pictures and scenes and questions for him to point at things....he did great with everything the first 10 or so minutes. Then we enter them asking questions, pointing at grouped items and wanting one word descriptions, theory of mind set ups, ..........now, they're seeing things and so am I. This understanding that he's answering things flat out wrong or in some weird way was the next hour and half. Honestly, it can get upsetting when you see some of this. They two testers were so kind and full of encouragements for Sawyer. They took several breaks and honestly, he did awesome. .......I thought I wouldn't know a thing once we were done but no, I got a truly major overload of information. He was average on this and moderately delayed here and there (for those not knowing, delays are measured mild, moderate, severe...), they felt it obvious he'd had good intervention therapies because he did so well with his alphabet and certain skills that were easily memorized and parroted back. I learned that he has a classic echolalia response to many questions (echolalia is one of those Autism words that I thought simply repeating a word or statement...as in Connor can do this and it's like he's a broken record that keeps skipping back and repeating over and over and over....whereas Sawyer parrots answers to questions that should have his own answers with answers he's heard someone else say)....he's social alright but he's social when it's on his terms (can I just say that was totally enlightening for me and it's dang true and makes me get why he seems perfectly fine when he's running around and playing while I'm talking with friends....yet having a fit and running away or wanting to hide the minute we enter a restaurant or new social setting without kids or entertainment).....anywho, like I said it was information overload. I did ask if they thought he's what they'd deem high on the spectrum and she said that was a tough thing to answer. In certain ways, yes and then again, no. Like the one woman explained, Sawyer seems to have holes in conversations and though all his therapies have helped with many things, they've also missed the major point of him learning how to sort of connect all the dots. She thinks he can start kindergarten with a regular class since it's only 2 and a half hours but that he definitely needs to be pulled daily to reinforce learning points....and she was honest that time would tell if this was his best course of action. She did think ABA therapy would be good for him since he has a good attention span and works well while being encouraged........but that will have to wait until we've gotten a full on phsychological eval with a definitive diagnosis. .........I don't have any of the papers that they went over with me yesterday so have probably left huge gaps in this post but I should have access in the next few days through their MyCharts system.
For now, our next step is to see the psychologist (which they're trying to pull strings to expedite this and also gave me numbers to several others and said take the first appointment we can get) and to call his current therapist and teachers once I have access to the notes and results of the speech pathologists. She had new suggestions on where we should go from here and once I've got more of an understanding of those things, I'll share. I was armed with packets of info but it looks like the biggest next step, beyond the psychologist, is to have a new IEP meeting to ensure the new suggestions are put into place before school starts.
Okay....hoping some of that made sense and willing to try to answer questions if you need me to. I left out so much that was discussed and there is so much more that could be added that I think the general public doesn't understand with a quick Autism "checklist".....but the biggest thing I'm thinking right now is I did what I thought was best all along. I didn't pretend there were no problems that needed to be addressed but I did detest the thought of yet another child being diagnosed anything.....and really, I'm okay with that. This is the right time for us. .......maybe I'll share the new issue soon about how we're hoping to be approved for a new (to me, anyway) program where Connor will hopefully be approved for Medicaid based soley on his own income and health issues. It's an involved process and something we will be so thankful to have since we've yet to find a true money tree to fund interventions and future surgeries. .........so please, no judgement. It's not welcomed or needed.