Early intervention...or how the heck do you give special education to an eight month old?

In my non-mommy life, I am a speech-language pathologist.  I graduated with my Masters in 2003 and began work with a pediatric center.  While in school, I always thought I wanted to work with older children in elementary or middle school, or even high school.  But I started working with preschoolers in my clinical fellowship year and suddenly became involved in early intervention.  For the next ten years or so, I worked primarily with 2-5 year olds, with some of my beloved elementary school aged children sprinkled in.  I became well versed in local early intervention and the services it provides.  In our state, Early Intervention is from birth to five years old (entering kindergarten).  In the past five years, they have divided these services into Part B and Part C so that the 0-3 set is under one set of criteria and 3-5 is under another.  Most states have 0-3 in Early Intervention and then their school systems get involved at age 3.

When we got F's diagnosis and knew he would have his eye removed, I immediately started the process for an evaluation. I did not want to "wait and see" if he developed issues following surgery.  He is high risk for motor development issues because he has monocular vision.  I wanted to meet with a team and get ideas of what I could do to help him with his gross and fine motor skills and get a baseline for his skills.  I emailed the Birth to Two Team Leader while he was in surgery. Sometimes it is good to have connections.

We waited for F to heal and recover and to complete some of our appointments. In the meantime, I forced F to use his left side as much as possible.  I sat his carseat in the backseat where he would have to turn his head to look out the window.  I sat on his left side when he was in his highchair and would place food on that side of his tray.  Within a few weeks of surgery, he was crawling and seemed to have no issues with left neglect, but I still wanted someone to look at him.

 A few weeks out, I contacted CDS to schedule to evaluation.  The intake case manager did not connect my name to who I was.  However, the OT that was sent out as part of the team remembered me from when we worked together.  They came at the beginning of May.  All of F's skills were well within the normal range, including his fine and gross motor skills.  He was compensating well with his functional eye and developing at a similar rate to his twin brother.  However, given that he was "at risk" for developing motor issues, they wrote an Individual Family Service Plan for us to have an Early Childhood Educator come to the house, watch his skill development, and give me ideas to help him every month.  They also recommended a Functional Vision Assessment by a Teacher of the Blind and Visually Impaired.  Assessments from the TBVIs run on a school year calendar, even for children under three, and our referral was a bit hung up, so we are still waiting on that assessment as I write.

Our ECE is someone I worked with a bit in my job.  She was very helpful in giving me things to watch for and activities to introduce to continue strengthening F's skills.  She had me play games with flashlights and changing lighting in the hallway to increase his visual awareness.  She showed me how to teach him to check walls and doorways to his left.  She helped me help him navigate stairs.  She and I know she is "front loading" me with information for the future.

F is pretty fearless.  He is our climber and has had no trouble navigating stairs, steps, or different types of flooring.  He has learned quickly how to compensate for his eye by turning his head or using his hands.

If I weren't a practitioner in the field and didn't have connections, I don't know that we would have gotten Early Intervention services.  But my advice to parents is to be proactive, learn the ins and outs of the system, and fight for what you believe you need.

Not a glass eye, exactly...

We get a lot of questions about F's eye.  I hope to address most of them here as best I can.

During his enucleation surgery, Dr. Mukai placed a silicone implant into the socket.  This takes the place of the eye.  He equated it to a rubber ball.  Typically, this is how prosthetic eyes are done nowadays.  They used to be entire balls that could be taken, leaving an empty socket.  As technology has developed, they have found that putting an implant in that a prosthesis fits over gives more natural movement and limits infection.  Dr. Mukai attached the muscles to this implant and then placed a conformer in before stitching the lid shut.  The conformer is a "place holder" for the prosthetic eye.  It is clear and has a few holes in it.  I found this out when F decided to rub it right out at meal time.  I freaked out.  I had not been brave enough to pull back his eyelid and look at what was in there.  He was having a tantrum, started rubbing his face, and *clink* there it was.

We met with our ocularist, Dr. K, about six weeks after the enucleation.  An ocularist is someone who makes prosthetic eyes.  There are not many of them in the country.  We have three that visit Maine and Dr. K is the one who is used by our opthamologist.  The boys immediately fell in love with him.  He explained to us that prosthesises are typically made with an impression.  This does not hurt but is a weird feeling.  With young children (F was 7.5 months at the time), they often will do this under anesthesia.  The last thing I wanted to do was put the poor kid under AGAIN if we didn't have to.  Dr. K was confident he could fit the eye without an impression but told us it would take extra visits to get it just right.  We were more than willing.  We left with a temporary prosthetic, which was stock but fit the measurements of his socket with a little grinding.

Prosthetic eyes are not made of glass.  They are typically made of an acrylic polymer.  They can be shaped to fit the opening.  They can be "built up" in areas or shaved down.  They are not round, as your eye opening is not round.  F's fits over his implant like a hard contact. When they are not sized correctly, they can rotate or fall out.  With our temporary eye, F got really good at rubbing it out when he was tantruming.  Amazingly, he will lay on our lap and let us put it back in.  It is really quite easy once you get the hang of it.  You just pull his upper lid up, slide it in, pull the lower lid over, and done.

After our first meeting, Dr. K started working on F's permanent prosthetic.  He tried several sizes in the socket and studied F's right eye and his brother's eyes.  He hand tinted the eye and experimented with the pupil and iris size. The results were amazing. 

It took a handful of visits and some work but he did a great job. We had some problems with rotation originally but he was able to fix them quite easily.

We don't take his eye out frequently. In fact, the more we can keep it in, the better. It reduces wear and tear. We have had to take it out to wash it when it gets particularly gross. We use a small plunger and he allows us to just like when we put it in.

I also want to answer a lot of the questions we get asked a lot.

• He can't see out of it and never will. Even if they make technology for prosthetic eyes to see, his brain won't adjust to understand vision with that eye.
• His eye will grow a little but much of your eye growth is in the first five years of your life. They can add a bit to the eye before he needs a new one.
• Yes, some children swallow the prosthetic. As long as there is no evidence of breathing troubles, they just instruct you to "let it pass."
• It does not float.
• He should be able to drive and do just about everything someone with two eyes can do. He can't be a fighter pilot or in the military. Everything else is fair game.

Some people hesitate to say things around him, like "it's all fun and games until someone loses an eye." It is just a saying. I don't let it bother me. In fact, there have been times where I have said "let's keep the eye we have, ok?"