Preparing for Transitions

When our son AJ turned 3, we had two big changes occur: first, we received his diagnosis of autism. Secondly, he was about to begin full-day Head Start at Choctaw Nation in Oklahoma. The children were expected to nap or lie quietly for an hour during the day, and our son could not nap without his beloved binkie. So we decided at that point it was time to take away the binkie, cold turkey.  We had talked about it for a while, and so I had a plan in place, but I expected a long struggle that would last night after night. So that Monday, I cut the nub off of AJ's binkie, and when it came time to go to bed, I gave it to him and said, "Sorry, Mommy broke your binkie."

AJ took the binkie, held it, and started laughing. He tried to put it in his mouth and when it fell out he picked it up and laughed even more. He went to bed holding it and laughing. It did take him a few hours to settle down, but he never cried until he was really tired. He just laughed the whole time!  The second night, he did the same, but it only took an extra hour to get him to bed. After that, we gave it to him every night for the week and he held it, and by Saturday night we didn't even give it to him and he didn't ask for it.

Sometimes the things we think are going to be so hard end up not being so difficult, and the things we think will be easy end up being something we struggle with for a long time. Hearing the words "autism" from an official diagnosing team were much harder than I thought it would be, as we had suspected it for so long, but to hear the words just seemed so final--that our lives had changed forever and AJ would never be the child we had thought he would be. It has taken a long time for me to realize that this happens to all parents--for some, it just happens much later in life when the child chooses a different career path than the one you imagined for them, or comes home covered in tattoos, or a child has an illness or disability later in life. We all have to change our expectations for our child, and we have to work through that transition.

This past week our son had to go under anesthesia for the first time for oral surgery and a BAER ear test. I was very concerned about how my son would handle such a procedure, especially the anesthesia, not understanding what was going on. But when we got to Children's very early on a Friday morning, he was all right. He fussed a little when the bracelet was put on but then got over it. He even liked changing into a johnny and every time someone came in the room wearing scrubs he said, "Doctor." When it came time to go back to begin, he took his Papa's hand and went, and did just fine.  Waking up, he was groggy and a little fussy, but he didn't scream or cry much. And soon after we were home, he seemed back to his normal self.  Even with having two teeth pulled, by the next day he was ready to eat and was very happy.

As parents and caregivers, sometimes the things we think will be so hard end up not being more than a bump in the road, if that. And sometimes the things we think will be easy end up being so hard. Remember that you don't travel this journey alone. We are all in this together. Whether it is the IEP process, or transitioning to a new school or program, or a medical procedure that is coming up, be sure to reach out and connect. We are in this together.

Personal Story--Mindi, JC and AJ

This Personal Story was included in the May HSNPTA Newsletter. Every month, we hope to include a short personal story of the journey of one of our families. If you'd like to write a personal story for us to use in the newsletter or the blog, please email us!

Personal Story: Mindi, JC and AJ

We moved from Massachusetts to Oklahoma when our son A.J. was 17 months old. Soon after, he stopped using the few verbal words he knew and stopped all baby signs. He began to have repetitive patterns and would look at things out of the corner of his eye. We took him to our new doctor, who thought A.J. perhaps was delayed due to our cross-country move, but after a few months of insisting something was not right, we finally were referred to Early Intervention.

At age 3, A.J. was diagnosed with autism and, soon after, we discovered there were very few resources for him in our part of Oklahoma. We began searching for new positions and last spring my husband was called to a church in Bellevue and I began interviewing in Burien. We moved to Burien in August and began the process of learning a new school district and new ways of providing services for our son.

It is a journey to navigate new systems and to learn the resources inside and outside of the school system. I encourage parents to reach out to other parents for support and insight. We started the “Parent and Play” support group on the first Tuesday of the month just for this purpose, so that we might get to know other families on similar journeys. I also encourage parents to get as much as they can in writing when decisions are made, because so often there are misunderstandings.

For families new to Highline, we say “Welcome!” We understand the struggles of learning an entirely new school district and system and ways of writing and understanding I.E.P.’s. We hope that you will come to one of our HSNPTA monthly meetings—that is how we first became connected with other families, made friends, and learned more about Highline. Whether you’re new to Highline or you’ve been around for a while, we’d love to get to know you, your child and your journey.