Our Story

So I have not written in quite awhile. I have had a sort of writer’s block/laziness issue. We have also been really busy with moving and doing the transition to kindergarten. That will actually happen this upcoming school year but as most of you special needs parents know there is a lot of prep work that goes into the planning for the upcoming transition. Elizabeth has come so far. It is sometimes hard to realize just how far she has come seeing her every day, but when you look back at the last few years you truly do see that she has made some huge milestones.

Elizabeth was diagnosed with Autism at the age of 2 and a half. I had concerns prior to that but every time I would bring them up the doctor would sort of dismiss them. Our doctor said several times that she did not have any delays and that she was just a larger baby and that they tended to do things a little slower. Elizabeth was a fairly large baby when she was born but she was not really a huge baby by any means so this never quite made sense to me. When she turned 2 I took matters into my own hands and called early intervention.

Early intervention came out and did their assessments and sure enough she qualified for speech, occupational, physical, and developmental therapy. I expressed my concerns to them regarding my suspicion that she may have Autism and one of their assessors assured me that she did not. I was relieved and assumed that this therapy would be short term. She would have it and get caught up to her peers in no time. Little did I know that assessor should not have said that, to this day I am not sure why she did since it was not really her role or her place to do so, but I did not know that at the time.

A few months later our supports coordinator at the time suggested that she be evaluated at the Children’s Developmental Unit. I was unsure why I needed to waste my time doing that since the EI evaluator already told me that she did not have Autism. She suggested it might help us get more access to therapies and such, now looking back I am pretty sure she saw all of the glaring red flags of Autism but was being nice enough not to say so. So we set up our appointment at the CDU and then waited, there was a 6 month waiting list at the time. Luckily we ended up getting a call that they had a cancellation and they could move our appointment up. Our appointment was originally set in September and we ended up getting an earlier slot in April.

I went into the evaluation thinking it was nothing but a formality and came out of the evaluation with an Autism diagnosis for my daughter. Talk about a horrible day.  Looking back I really wish that EI evaluator had not said that she did not have it. That really gave me a false sense of hope. I had assumed she was an “expert” so of course I took her at her word. Looking back I know better now but at the time I had no idea who did what and who could doll out that sort of advice.

I will also mention that the evaluator at the CDU was kind of mean. Her bedside manner left a lot to be desired. I will not go into great detail as far as that goes but her way of letting me know was probably not the best way to break the news to an unsuspecting parent.

I was so upset when she received this diagnosis; it really caught me off guard. I think deep down I had known that it was the case but I had allowed myself to be falsely reassured and I think that made it so much harder to hear when the truth came out.

So I went home and I started researching. I looked up everything Autism related, I wanted to find out how I could “fix” this situation. There is a ton of research out there and if you are new to having a child diagnosed you will likely do this as well. You will research until one day you cannot do it anymore and then you will just stop for awhile. When you stop though it is a good thing, when you stop you can stop obsessing over trying to fix what you cannot fix and just focus on being a mother.

After you get over your research burn out you will start it up again but not as intensely as you had before. You will glance at some new studies to see if there is anything that sticks out, trying to find out if there is anything that is really worth trying. We have tried several things, including special diets and supplements and they have not helped us one bit. I will say that it does help some kids so don’t give up but just know that if it doesn’t help you and your child that it is ok. Your child will likely improve, one day you will look back and you will see how far they have come. There are things that Elizabeth is doing now that as a 2 year old I would not have thought possible, so just know that things usually get better. Just take it day by day and one day you will see it coming together and that all of your hard work is worth it.

So that is how the start of our journey went, I will continue with our story later on…..

Credits to Brenda since she started to write out her story and inspired me to write down some of our own, and also for helping me get over some of my writer’s block. I had a really good conversation with her today that sort of inspired this piece.

Thanks for reading!