Autism Speaks Now

It has been an eventful month on the home front. The females of the family got to go to the most anticipated event of the year...the Taylor Swift Concert. It was a family affair indeed. We had MiMi, Aunt Terri, Maddie and even a guest arrival of our college student, Eggie (she managed to fit us in!) The cousins even made homemade t-shirts for the occasion. It was great fun and a greatly needed change of pace.

Oddly enough the title of the tour is Speak Now. The odd part comes in because this falls on the very same week that earlier in the week big little Eli had tested in the autism spectrum. We have known for sometime Eli was having some struggles. This mostly became apparent when his speaking did not progress. He at a very early age (barely two) could identify all his letters and numbers. He talked about those things alot... and I mean constantly. Also could identify all shapes and colors by two and a half. With this and our selling one house and moving to another we never realized when the rest of the speech came to a screeching halt just before his third birthday.

I had called a friend that has her masters degree in speech therapy and a son a little older than Eli and compared notes. She said give him until 3 and a half and maybe it would come together. I took him to his 3 yr old check up and his then pediatrician (old man=old school) said he was the "baby of the family", "a boy", and "has a chatty older sister that must talk for him". All true, I cannot deny. So despite our concerns, Jason and I decided to just bump Eli up to school five days a week and see what happens. It did help somewhat but within a week we get a call from the teachers wanting to meet (as any parent knows - not typically a good thing). Even one teacher came in her day off... ok now I'm worried. Eli was not interacting with others, not responding to his name consistently, not holding a basic conversation, not following simple directions and not able to communicate what he wanted. I had always paid attention when anything about autism was on tv or a magazine article so I knew enough of what they were getting at to know what they were not telling me. In other words, the teachers had the same concerns we did, that we had yet to voice. They suggested a speech therapist screening which confirmed the suspicions along with the pediatrician... there were just far too many signs to ignore.

Now we wait. We are lined up for a full developmental screening but guess what... it can take a YEAR OR MORE. This is what we would need for our specific diagnosis of the severity and type because 'autism' or 'autism spectrum' can mean many different things. What a joke! I mean really people, you can tell me what the sex of my baby is when I am four months pregnant but it takes that long to get me in to see how bad my baby's disability is. So with that said...I rant and nothing changes... we wait. We will get an occupational therapy screening in about a month. That screening, coupled with the speech one already completed, will at least give us something to be working on until the rest of this works out.

Needless to say, this was not what we wanted for Eli but it is something we will do everything we can to help him with. Seeing relatives through more life threatening situations makes us grateful that it isn't something worse. We know it could be. It won't be an easy road but it is one we were meant to travel. It is good we caught it early - with things like this early can mean everything. I keep thinking if we had never moved and not had a certain set of events in place Eli would be 5 and starting kindergarten before we started this journey. It is even better God led us to this school and this new class that led us to this teacher who has her master's degree in special education that led us to get this ball rolling NOW. She has been a wonderful resource for us. She even came by my house on her day off while Eli was at school to give me a hug of reassurance and even better deliver a local contact who is her neighbor Amy who has walked this path with her now 8 yr old son and knows the direction to point me in. I also got in touch with a long lost friend that has gone through this who has given me a ton of material that helped her 'figure it all out'. God bless you, Ginny! With this we at least know in some way what to expect. We know it will be a huge commitment in every way - emotionally, physically, spiritually. Without a second thought it is a commitment we will take and are lucky to have loving friends and family pray for us as we take this walk. This will be the test for how good our insurance really is, that's for sure:)

So now we have a huge learning curve to catch up on. Makes me wish I didn't avoid every science and biology class I possibly could in college. How would it look if I walked into the bookstore looking for 'Autism for Dummies'? I feel like I am studying for the most important test of my life but (a quote from Amy who will be one of my mentors through this whether she likes it or not) I feel hurt that in the genetic lottery Eli didn't exactly win but if I can't get it together and get him every bit of help I can, he loses twice. That just isn't going to happen.

I know on an entirely different level what it means that silence can be deafening. I have a beautiful daughter that I give gum to just so I can get a moment of peace and quiet. She will talk even when no one is listening. Then I have this sweet and lovable, handsome boy who cannot tell me what he wants or needs, but when he is 'present' he can give the most sincere hugs. I just long for the day when one of the 50 times a day that I tell him I love him that he can tell me "Mom, I love you, too." Autism speaks now, but it is my prayer and my belief that with a little help, Eli will speak instead.