our experience with early intervention.

about a year ago this time was one of the most stressful times of my life.  we had just bought a new house, i was around halfway through my pregnancy with fin and completely exhausted, and were getting started on a very long road with early intervention.  i've been thinking about that time a lot.  i also get asked about it quite a bit -- why we decided to go through early intervention, what the screening process was like, the ADOS test, and how we were matched with our speech therapist.  so i thought i'd go through that process and share what our experience was like in case it is helpful to anyone out there. 

when julian was about 14 months old, i noticed he was quiet.  i hadn't heard him make his usual baby babbling sounds in a while  he had been very vocal his first year of life, and one of his favorite things to babble was 'dadadadadadada' to philip.  at this time he had recently started walking and most of his time was spent perfecting that skill, so i didn't worry too much about the lack of speech.  of course, a quick google search [worst idea ever, always] told me that any loss of speech in a child of any age that was previously babbling is a cause for concern.  one word in particular stood out to me: autism.  i tucked it away in the back of my mind and made a note to talk to our fantastic pediatrician about it at julian's upcoming 15 month check up.

at the check up, our pediatrician listened to us and tried talking to julian.  he said he didn't see any cause for concern, but that the google search was right.  a speech regression is usually a red flag.  he gave us two options: either we gave julian three more months to see if his speech picked back up and re-evaluated at his 18 month check up, or we could start the process with early intervention colorado.  philip and i decided that it would be better to get the ball rolling with EI as soon as possible, in case there was any developmental issue.  our pediatrician agreed and said the sooner a child can get the help they need, the greater his or her chances for success.

[sidebar: if you don't know, early intervention is a state and federally funded program designed to help babies and toddlers with developmental delays or disorders.  there is a program in every state, but every state's program works a little bit differently.  you can find a list of contact information for every state's EI office here.  assessments and therapies or programs are all of no cost to families until the affected child is three years of age.]

after a week or two,  someone from colorado's EI office called me and an assessment for julian was scheduled.  when the appointment arrived [this was delayed a couple weeks because we were traveling at the time], philip and i took julian to the offices of rocky mountain human services, where EI is run.  we met our service coordinator, who is our point of contact at EI [more on her in a little bit], and she explained the assessment to us.  we sat in a playroom with julian and could be with him the whole time, interacting with him as usual, giving him snacks or diaper changes or whatever he needed.  the coordinator then brought in a clinical psychologist and a child speech therapist.  our service coordinator sat in the back of the room and observed, while the psychologist and speech therapist played with julian and asked us all lots of questions. even though we were only concerned about his expressive communication, they performed the assessment in all five areas of development: adaptive and self-help skills, cognitive skills, communication skills, physical development, and social-emotional development.

 the assessment itself was fine and julian was fantastic. as soon as the assessment was over, we received his results then and there.  for obvious reasons of privacy, i'm going to give you general details here.  it was determined that julian had a significant enough delay in his communication to receive therapy services.  we were able to sit and ask as many questions as we wanted.  one of the biggest questions we had was what would cause julian to have such a substantial regression.  there were a few reasons we discussed, but again, one that stood out was autism.  i was incredibly happy that there was a psychologist there who understood the emotions we were going through and was so unbelievably kind.  we learned the next step, which was coming up with an individualized family service plan.

the IFSP process was easy and convenient for us.  our service coordinator recommended a speech therapist and the two of them came to our house.  we had asked for a speech therapist that was well-versed in working with autistic children, in case that was something we ended up needing. we were allowed to have whoever we felt like we needed at our IFSP meeting, though it was just philip and i and we chose to do it while julian was napping.  at the meeting we discussed how often we felt like julian would benefit from therapy, met the speech therapist to see if she felt like a fit for julian, and talked a bit about how therapy would go. we instantly liked the speech therapist and agreed to progress with her.  i'm going to call her 'jane' for privacy reasons.  we also talked with jane a little about what could possibly cause a speech delay like julian's, and she discussed a few possibilities, and again brought up autism.  philip and i talked and decided we would go ahead and have julian assessed to see if he was on the autism spectrum.  this two-part session was scheduled for early fall, and needless to say the wait was very frustrating for us.

it was a couple of weeks [maybe 2-3?] before jane was able to start with us regularly.  the sessions were scheduled to be in our own home at a time that was good for us and jane, and repeat at that same time every week.  i was nervous for julian's first session with her, of course, but there was really no reason to be.  at that first session jane explained that for the first few weeks she would just play with julian so he could get to know her and feel comfortable.  i took part in every session, sitting on my living room floor with jane and julian and just playing.  after a couple weeks, julian was playing freely with her.  at the end of each session, which is roughly 45-60 minutes, jane would give me tips on what we could work on each week.  in those early sessions it was always new signs we could teach julian to ease his frustration communicating.  one of the first goals we set was to alleviate problems at mealtime by learning signs of foods he liked so he could ask for what he wanted instead of pointing into the kitchen and yelling, then getting upset when we brought the wrong food to the table. 

it worked like a charm.  julian had already been signing basics like more, mommy, daddy, and all done, but before long his signs were in the double digits.  before too long we'd exhausted all of the signs that jane knew and i was learning signs on my own via internet videos [baby sign language is a great resource, as is ASLU for more complicated signs] to teach julian.  for signs that he couldn't do or that were too advanced motor-skills wise, we'd make up our own.  the bottom line was if julian could communicate his wants and needs to us, and we knew he would of course speak eventually.  he wasn't deaf and didn't need proper ASL for his lifetime.  within a few months, we were signing almost all of the words we spoke to him at home and he was signing 2-3 words at a time to form makeshift sentences.  it was absolutely amazing.

the ADOS test was the worst part of this whole experience.  we didn't necessarily think that julian was autistic, but since it had been mentioned to us a few times as something to consider because it could be the reason he had a speech delay, we decided we would have him diagnosed to be sure.  the thing about autism is that the sooner a child can get the help he or she needs, the greater their chance for success.  so that was really important to us.  but, like any diagnosis, once you know it's a possibility you're googling everything and then examining every little thing your child does.  that first week or two we heard autism was a possibility we watched him as if he was under a microscope.  then we realized how awful it was, how a diagnose would change absolutely nothing about our love for julian or our joy he was in our life, and stopped worrying.  it worked -- until it was time for the ADOS [autism diagnostic observation schedule] test.

the ADOS was administered once again at our home over two different days [you can read more about the ADOS here].  the first was done with a child psychologist [the same one who had evaluated him for his speech delay] and a speech therapist [unfortunately not jane, but the speech therapist who evaluated him for his speech delay]. they came to our house and the speech therapist did some games with him to assess his communication development and the psychologist asked philip and i approximately one billion questions.  everything from my pregnancy and birth with julian to his development and routines was discussed.  the whole thing took maybe an hour or so.  she left us with a few booklets of questionnaires that philip and i had to go through together.

the second part of the ADOS was very difficult for me.  philip was traveling the afternoon it was scheduled for, so it was just julian and i here for the assessment.  the same psychologist we'd worked with twice before came over to our home and performed the toddler ADOS module.  because the ADOS is designed to put the child in a situation where behaviors typical to autistic children to emerge, it was hard for me to watch.  it looked like someone playing with my child, but taking notes on everything he did.  from pretending to bathe a baby doll to asking her to blow up a balloon, everything was examined.  there were also instances where she put him in a frustrating situation on purpose to see how he reacted [like sorting blocks into the right shape holes, but blocking the holes with her hand so he couldn't get the blocks in].  it was very hard for me to watch, but of course julian didn't seem to notice anything was going on.  he was just playing as far as he knew.

after the ADOS was completed, we had to wait a little over two weeks before we got the results.  this was due to a fluke -- the psychologist who administered the ADOS was going on her honeymoon -- and the wait was torturous.  i felt a lot of guilt and frustration during that time.  when the day finally came to hear what the ADOS had found, the psychologist who administered the ADOS and our EI service coordinator came to our home again.  autism is diagnosed on a spectrum, and it's not as easy as a medical diagnosis that is positive or negative.  we talked about julian's results and if we needed to change his therapy at all, which we elected not to do.

jane then started working with julian to vocalize more, and her patience and knowledge has been more than i ever imagined.  she is able to push him further than we are, has given us expert advice and tips on how to work with his unique skills, and the tools we needed help him succeed.  jane has become one of julian's favorite people in his life, asking for her regularly and anxiously looking forward to each visit with her.  therapy is play-based and she frequently brings new and favorite games, toys and puzzles for him.  she's an important part of our life now.

we check in with our service coordinator frequently and meet every few months to evaluate how therapy is going and set new goals.  it's been such a positive experience so far, and i have no doubt it will continue to be so until he turns three and ages out of the early intervention program. 

if you're not sure if your little one night have a delay or qualify for services, i say go ahead and get the assessment. it can't hurt anything, it won't cost you anything, and the sooner you can get services for your child the better it will be for them.  so really, there's nothing to lose.