Still A Joy

I've been absent from this space from years. It feels like an eternity has passed, and yet no time at all.

I've dealt with a lot in that time frame. In the 5ish years I've been mostly absent, we've added two more children, bringing us to three boys. I've been diagnosed with PTSD, anxiety, depression, and phobias, which are all made worse after having a baby.

My boys are generally happy, and Alex and I have really seemed to come into our own as parents. We're able to now make decisions we're comfortable with and confident in. Their births were beautiful and we reveled in having cuddly newborns each time. We also try to appreciate whatever current phase our boys are in and love and support them through it, regardless of how challenging it can be.

However, all hasn't been unicorns and rainbows. Cole, our middle child, developed sinusitis and eczema when he was quite young. We tried everything and it was only after allergy testing when he was 2.5 half years old that we were able to narrow down his main food trigger to soy. So he's on a specific diet.

Then around 10 months of age I started to express concerns about his development, his lack of babbling, and other concerns. He was a very quiet, very cuddly baby. I took him for his first Early Intervention (EI) evaluation in July of 2016. While delays were noted, they were not severe enough to warrant therapy. I took him again in December as he was losing words and had not made a lot of progress. At that time delays were identified in both receptive and expressive speech, along with social skills. He started speech therapy and group therapy at that point.

Then in February (2017), he had another evaluation as he turned 3 and switched programs, from EI to ECSE (Early Childhood Special Education). That evaluation showed a significant delay in his language skills, but an even greater delay in his social skills. We knew then that he likely had autism.

At that time I requested a referral to a developmental pediatrician and a private speech therapist. We had to wait 6 months for the developmental pediatrician referral (to make sure there was a sustained delay... grr..) but got the referral to a speech therapist an hour and a half away. They had a wait list but we started going there in July and absolutely love his therapist.

In May we paid to take him to a speech and language clinic at a university a few hours away. That was along day, with 5 hours of assessments and 7 hours of driving. That assessment clinically diagnosed him a significant speech sound disorder and significant receptive/expressive language delays.

In September he started special needs preschool through ECSE two afternoons a week for 2 hours each day. I struggle with it due to my mental health problems but so far it's manageable. We also spend about 4.5 hours of every Friday traveling to/from and engaging in private speech therapy. That will change soon, though, as a pediatric therapist office is returning to the area soon and we hope that Cole will also receive Occupational Therapy for his sensory issues and difficulty with transitions and emotional regulation.

Yesterday, November 1, 2017, he was officially given the educational label as "autism as primary disability". I knew it was coming, but I held out this silly hope that while he's likely autistic, he would be "high functioning" enough to not need the educational label. I was blown away when every.single criteria was checked on the list. He definitely meets the requirements.

Now begins the process of applying for SSI for him. He is an expensive child, both financially, emotionally, and time wise. We love him dearly, he's such a sweet little boy, with an angelic smile and shimmering blue eyes.

While we work towards progress and continue to advocate for our sweet boy, we hope that the developmental pediatrician appointment scheduled for May 10, 2018, will both hurry up and arrive, and never materialize. Then, maybe, there will be days when I can stick my head in the sand and enjoy my boy not having an official medical diagnosis. At the same time, that diagnosis will open up an entire world of support and resources, so we need it.

What a road we've traveled, with so far to go yet.

Understandably, this is a lot to bear (without the rest of it, this is just Cole!) so I've come back to this space as my therapy, my outlet, my help to process it all. I hope to be able to post somewhat regularly, as we research aids and techniques, therapies and play styles, if a service dog is right for him, if so where that service dog will come from.

It's a lot. Yet, it's all still such a joy. From Puppy Raiser to maybe, possibly, part of 3 piece service dog team.