Autism Awareness Day 23: What Happens During the First Year of Early Intervention

I originally wrote this on June 27, 2011 to share with families new to the early intervention process. I think Autism Awareness Month is a perfect time to dig it back out for those of you who are just beginning this journey. Early Intervention is so very, very important.
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I was reading through Cameron's most recent IFSP and noticed a year has passed since we first entered into the state's early intervention (EI) services. At the time, I really did not know what was going on with Cameron, just that he was regressing on skills he had learned, even talking. His pediatrician's office took notice and within 4 days, his service coordinator made her first visit to our home for an initial evaluation. If you are a parent who is beginning the journey of EI, I hope that this will provide you with a very general idea of what EI looks like. For the rest of you, this is just a little peek into our world so maybe you can get a better understanding of how much goes into making sure Cameron gets the services he needs.

First Steps: Getting Started

1. After noticing Cameron's delays, we were referred to EI. You do not need a referral though. As a parent, you can make the call if you are concerned about your own child. 
2. Our EI coordinator came out within days and did a home visit. She did a basic evaluation to see if Cameron needed further testing and would benefit from services. I don't know if all coordinators are as good as ours but we hit the jackpot. Our coordinator makes sure that Cameron gets every service available to him. She has been an incredible advocate for him!
3. Since he did appear to need further services, a more in depth evaluation was scheduled to be preformed in the home about two week after the initial visit. At this evaluation, his entire development was taken into account, including a hearing and vision screening. 
4. We received a phone call from the evaluator explaining his test scores and in what areas he was delayed. She also sent us a full written copy of the evaluation with explanations of what areas he was delayed in. Keep in mind, this evaluation process was not to diagnose but to see what areas of services he qualified for. In TN, to qualify you must have at least a 25% delay in two developmental areas or a 40% delay in one developmental area. Cameron had a 40% delay in motor, communication, self help and a 25% delay in social. 
5. A few days later we had another evaluation regarding his speech issues. This one is lost in the cobwebby corners of my mind. I have it written down but do not remember who conducted it or what was decided.
6. Within six weeks from our initial evaluation, we had a Individualized Family Service Plan (IFSP) meeting with our EI coordinator. At this very in depth meeting we reviewed how things were going with his in home therapy and we set some overall developmental goals for him. We also began the process of getting him scheduled for evaluations with OT, Feeding, and Speech. The IFSP that was created in that meeting is what lists his history, evaluation scores, and a running list of therapy sessions he has qualified for. The IFSP and coordinator is what keeps this whole EI service running for Cameron. Anytime a change is made in therapy, we meet to revise the IFSP.
7. Because of Cameron's lack of communication, a more formal hearing evaluation had to be conducted by a local audiologist. He had some issues of pain in the first test, which we now know was because of his SPD. We went back for a second test two weeks later and his hearing was fine. These visits were covered by EI. We also used our private insurance to visit an ENT for a further check but he too said his hearing was fine. 
8.  After eight weeks from the start of all of this, we had an in home evaluation with Birth to Three to see if he would be a good fit for their services. They provide him with his overall developmental therapy and also act as a support for parents (LOVE THEM!). At first we began with in home only visits because he was not yet socially ready to be with peers. They did not have a center based opening any ways so it worked out for the best. Having the home based therapy as our first service was a great way to get us used to this new way of life.
9.  In the 14th week we had a formal speech evaluation at Children's Hospital Rehabilitation Center. He qualified for one hour a week of speech as well as feeding therapy every other week. This is when he was diagnosed with MERLD and feeding difficulties.
10. A couple weeks later, we began formal speech and feeding therapy at Children's. At the time we rotated feeding sessions with speech sessions.
11. At 18 weeks out, we went for an OT evaluation to address Cameron SPD issues. He qualified for one hour a week to help him manage his sensory seeking as well as sensory avoiding behaviors. 
12. Also in the 18th week, the Birth to Three center moved him to center based services so he could interact with other children his age, all while working on his developmental delays. Win, win!

 12 steps and 18 weeks. That is how long it took us to get him fully started on all of his therapies. It's not really a long time but when you are the mom of a child needing services it feels like forever. All you want is to get all those evaluations done so you can start treatments and move closer to a diagnosis. Sure a diagnosis is just a label but it also helps you to better understand how to help your child.

Second Steps: Stability

1. A little advice: Learn to fly on your own and research what diagnosis have this far. You are your child's best advocate. You cannot rely on therapists and medical professionals to hold your hand and tell you exactly what to do. Know your options! Even though we are blessed with an incredible EI coordinator, she is not a mind reader. It is my responsibility to keep her (and our therapists) in the loop of my concerns that I see day in and day out.By six months I was learning everything I could about MERLD and SPD. I also had educated myself enough about all related developmental issues to know that something was still amiss. I brought up my fears to his therapists and they all agreed he needed to be evaluated for Autism.
2. Adjust as needed: As problems arose with Cameron, we adjusted therapies as needed with the help of our coordinator. We added in extra speech and feeding as well as increased his time at Birth to Three by 30 minutes and reincorporated home visits. 
3.  During our 8th month of EI, we visited with a psychologist for the Autism evaluation. The doctor wanted to see his developmental growth in a two month time span so it was not until our second visit during the 10th month of services, that we received the official diagnosis. Cameron was already getting all of the services he needed, even with the Autism diagnosis. For us, it just provided us with some new insight on how to better tailor his therapies.

Third Steps: Smooth Sailing on Choppy Waters

1. We have a diagnosis and are where we need to be therapy wise. We got to where we are by educating ourselves and keeping an open line of communication with our EI coordinator and therapists. Remember you are your child's best advocate!
2. We have spent money out of pocket for other doctor visits that while possibly related to his Autism, the visits are not covered by EI. Sometimes you have to take the extra step to cover all of your bases.

I hope this helps if you are a mom finding yourself in the beginning stages of Early Intervention. If you want more information specific to your state, please ask your pediatrician or google for you states Early Intervention offices. I'm also happy to answer any questions I can!