Indian Time - A Voice from the Eastern Door

This article is about Little Brother. He is my second son and is our baby and I’m very close to him. The difference with my second child was we weathered some rocky territory together. I had help when Big Brother was born. My in-laws were there and my husband was around to take turns with diapers and errands. Little Brother had me worrying about him and his well being before he was even born. Once he got here I rocked him through four months of colic while my husband was away at work. I slept nights with him on my chest while he battled pneumonia as a baby. He literally would wake up crying in the night if I was not holding him in his sleep or touching his little hand. It’s as if he could feel the distance separating us and would wake from a deep sleep. As he got older we spent our days together during the week while Big Brother got on the big school bus to go to the big kid school. In the afternoon we would walk out to the end of the driveway and wait for his return. He couldn’t talk at 10-months so I taught him a few signs. I learned some basics when Big Brother was small so we passed it on to the baby.

As time went on I became worried about his lack of words. People would tell me ‘all kids are different’ or ‘he’ll talk when he’s ready’. But when he was almost two I really began to push it out of worry and try to get him to talk. He would do things himself instead of try to sound out words. When asked to repeat a word he would shake his head no and run away. His pediatrician laughed and told me he wasn’t frustrated enough to form words because his caregivers know him so well, and not to get myself worked up. That I should think of him as lucky for being close to his parents and grandparents.

Soon he was past two and half and still not saying too much that others could understand. He was an early walker, climber, potty-trained baby. Before two he had the hang of wiping his own bum and escaping so his doctor told me his speech would come. Well I waited patiently with the worry building in my gut. When he got his latest developmental screening done at daycare he hit all his milestones except in language. I knew then that I needed to find resources for us.

That was when we hit some big walls and roadblocks in the road to accessing services for him. First I had brought up my concern with the healthy babies nurses who said they would look into some material or a program in Cornwall for me. It was unsuccessful because there wasn’t an early intervention program in place in Akwesasne for the little ones. It starts when they start school not preschool. A year or two is a long time in those first years. What rang in my head was how everyone everywhere pounds the early intervention idea into your mind but here I was being told he needed something but the answer was no.

I contacted his pediatrician, the clinic, the early years of Ontario and the tribe. The pediatrician didn’t have anyone he could refer us to because of my boy having Quebec health insurance. The clinic (healthy babies program) told me there was a board being formed to sort out this issue but it hadn’t even met yet. The early years of Ontario told me flat out there was a program called Words in Bloom that would be perfect for my son but that he wouldn’t be accepted because he had QHIP. The tribe’s suggestion was to have Little Brother meet with Franklin County for an assessment.

Well, in the first fifteen minutes of meeting my son they had come to the conclusion that he was slow and should be enrolled in a special education program until he turned 21. At first when being told this I felt sick to my stomach. I believed them. I started to feel sad until I questioned their findings. The only thing Little Brother hadn’t mastered was speech, but they were relentless even calling me at home a week after our meeting and telling me I wasn’t being responsible by not following their recommendations. I knew in my heart they didn’t know this little boy like I do.

I called the pediatrician back and was met with laughter once again when I told him about what Little Brother was being labeled as. He told me how as a Quebec resident with Quebec insurance there was no blueprint in place when an Akwesasne preschooler needs speech; and if I found a way to let them know they had a stack of others who could use an answer. That he was sorry he couldn’t be of more help but would be available to help out with paper work if I found some sort of way.

It took two days but I finally did get a call from the Words in Bloom program in Cornwall. I got my hopes up when I saw the number on the caller ID. I thought they were going to make me an exception. But no, it was to tell me directly that my son would not be allowed to receive services and then gave me a phone number to a speech pathologist in Akwesasne.

Again with my hopes up just a little I heard them tell me the phone number to our local clinic. When I told the woman that she was just giving me a general phone number to a clinic she then gave me a new phone number told me there was a speech pathologist who could be reached. I called it and it ended up being Iakhisohtha’s phone number. I thought perhaps it was for a speech specialist who drove in to work with the elders who could take on Little Brother. There would be no such luck.

My auntie in law informed me that CHEO in Ottawa accepts children with QHIP. I contacted them late that night almost desperate to have someone just tell me what I should be doing or could do to help jumpstart Little Brother’s language. The next day they called me back and informed me that in order to receive help I would need a referral from the pediatrician and a phone interview to help them start a profile on my son. The pediatrician faxed the necessary forms to Ottawa immediately and told me that I was the first parent he’d ever had to do the leg work and find out a way to get what the Province had us convinced was unattainable services, and in one weekend no less.

CHEO was very helpful and polite. They were sad to share that there was a waiting list of 6 to 10 months long but they would find me someone local I could drive Little Brother out to. In the meantime we exchanged emails on what I could do. That very same week I received a phone call from a speech pathologist who works with children in the AMBE school system. He met the teachers and helpers within two-weeks of his mom being told there was no way and simply no.

Little Brother was given ‘homework’ sounds to work on, fun games to encourage pronunciation. I was relieved to have them tell me that no my son was not slow some kids are just so bonded with their mothers and there is no frustration for them to spit things out. That they can get by. I had to fight back my tears of relief when being told there was nothing wrong with my baby that he just needed practice because he was a do it himself kind of fellow.

He says words but is a man of few words, instead of saying “I want juice please” he will say “duice pease!” He’s officially started speech this week. It’s going to be twice a week and I am so happy to have found people who want to help and most of all I’m thankful for the people who were there to light that fire by telling me no.