By the time we had our first appointment with an Occupational Therapist, I was desperate. So, when he presented an intensive home / clinic therapy regiment, I jumped in with both feet. Our whole life became her therapy sessions. All I could see was a possible way to reach my little girl and I went for it. What I couldn’t see was how my family was falling apart. Our marriage was strained and the sweet, happy Matthew I had always known was withering away. Something had to give.
I feared if I stopped, I’d lose Helen. If I continued as I was, I’d lose Matthew. Or Alan. Or both. It was a lonely, frightening place to live. I slowly came to accept that this was not something we could conquer and then move on. This was our life. Her progress (or lack thereof) was not as important as finding a way to make us a family. We would move forward together or not at all.
We started with Matthew. Here’s what we did:
1. Protect what matters to him.
When you have an impulsive, prone to melt-downs sibling, stuff gets broken. Stuff that matters to a little boy. We put a baby gate at his door and his room was off-limits to Helen. When she learned to scale the baby gate, I watched her closely. If something still got broken, it was replaced. Quickly. When she wasn’t able to apologize, I did it for her. I treated his Lego creations and foam swords like the treasures they were to him.
2. Find the time.
This was the hardest, and of course, the most important. Helen’s needs at this point were absolutely constant and overwhelming. But he still needed me. So he came before anything else on my list. Laundry piled up, phone calls went unreturned, appointments were cancelled. I played Legos instead. Sometimes he stayed up late, sometimes I got up early. But if there was a minute, I spent it on him.
3. Say yes whenever you can.
If it was at all possible, Matthew still played sports, went to birthday parties and played with friends. The price we paid for this was sometimes high, but always worth it.
4. Make him part of the team.
We became very honest (as was appropriate for his age) about what we were doing. I explained her therapies and invited him to join us. Most of the time he did. He began to take proud ownership in finding little ways to help his baby sister. We also began to find ways to integrate her therapy into family friendly activities. Sensory play meant baking cookies. Physical therapy sessions became strategic playing at the park. The best part is that we were having fun together, not just getting through another round of therapy.
5. Give him freedom to feel.
We knew how frustrating our days could quickly become. Although he was required to be kind to Helen (which he was anyway), away from her-and with Mom or Dad- he could say whatever he needed to say. I didn’t let his strong emotions frighten me into shutting them down. Besides, he was usually saying what I was already thinking anyway. I found that the more freedom he had to vent, the more in control his emotions became…and the closer he got to his sister.
And you know what else I found? We still moved forward, more slowly perhaps. But together.
And together changes everything.