A few weeks ago, along with a good friend of mine, I spoke at my MOPS (Mothers of Preschoolers) meeting about raising Special Needs kids. We both told brief versions of our journeys, and then talked a little about how our Typical Mom friends can relate to us, include us, and otherwise support us. It was an emotional and positive experience. We were surrounded by much love and encouragement, and there were tears happening all over the room. Below, I’ve included my talk. Of course, it came out a little different than this. I had my friend record video of the first part of my talk – the part about Jenna’s story. Then she joined me for the part about how our friends can help, so that part is only in written form.
Jenna was two days old when we found out that she has Partial Trisomy 22 – a very rare duplication of genetic material in her 22nd chromosome. We knew something was wrong when she wasn’t growing properly in the womb, and knew she would be admitted to the NICU immediately after she was born. We were expecting her to be tiny, and she was: 3lbs, 13oz and 17 inches long. We were expecting her size to have something to do with the placenta, or her ability to absorb nutrients…we weren’t expecting a genetic condition that, as we soon discovered, meant that our little girl would have severe global developmental delays. We also later discovered that she has a hole in her heart – an Atrial Septal Defect.
The three weeks we spent in the NICU were enough to teach her to drink breast milk from a bottle and start gaining weight. I would visit the hospital twice a day to bring my expressed milk, practice nursing, and bond with this tiny human that was my daughter. I had to re-learn how to change diapers and wash a baby, despite years of babysitting, because I had just never handled a baby this small. Family and friends visited, we asked a lot of questions of the nurses, we had regular meetings with her doctor to discuss her various tests, and finally, we took our tiny infant home.
Two days later, a moving truck came to pack up all our belongings, and my husband, Devin moved to California because early in my pregnancy, he had accepted a job down here. Jenna and I moved into my parents house for three weeks to complete the sale of our house, get Jenna’s passport and complete the post-discharge medical appointments. It was extremely stressful to be apart from Devin, and to have so many important things to take care of while also getting used to being a Mom, and trying to nourish our tiny baby.
To say that starting life as a new mother with a Special Needs baby was a little scary is putting it mildly. To start that life hundreds of miles away from any friends, family, familiar medical system and citizenship was overwhelming. But we knew we had made the right decision to move to California, so we asked a lot of questions, and then trusted that everything would be okay.
Over the next three years, my life was filled with appointments: with pediatricians, neurologists, cardiologists, opthamologists, hearing specialists, speech therapists, physical therapists, oral motor therapists, and Early Interventionists (EI).
Mealtimes were painful. At first, it would take Jenna an hour to drink 4 oz of milk from a bottle – she never did learn to nurse. When she started on solid foods, her therapists taught me special ways to feed her with a spoon to help with her various oral motor issues. Most of her food ended up on her clothes thanks to a tongue thrusting motion that is common in Special Needs kids. It took a long time for her to start feeding herself even with her hands, since her pincer grasp was so late to develop. For the first two years of her life, I dreaded feeding my child because it was a long and frustrating task. Every morsel of food was a therapy tool. However every success was met with a major celebration.
Physical and EI Therapy sessions were just as frustrating. At first, Jenna refused to pay any attention to the toys we were using to teach her to reach for things, or roll over, or grasp, or whatever the task was at the time. She did a lot of crying during therapy sessions. It was heartbreaking. We persevered and got creative with new ways of getting her attention and finally started to make some very slow progress.
Jenna smiled for the first time at 12 weeks – from 8 weeks (typical smiling age) until she finally smiled I was terrified that she never would. She sat on her own at 12 months, cut her first tooth at 14 months, scooted around on her bum for a couple of years, pulled up to standing at 2.5 years old, and finally started walking with a walker at 3 years old. Needless to say, I threw out all the books that tell you “What to Expect” from your child.
We joined a Mother’s club shortly after moving here, and made some very sweet friends. But I was the only one in my group with a special needs child, and it was lonely having the only child who didn’t react to tickling. Then it was lonely sitting with Jenna in the sandbox while all the other parents were helping their kids on the play structure. And then it was lonely being on the play structure with Jenna when all the other moms were sitting around chatting, because their kids could navigate the play structure alone.
We didn’t go to baby gymnastics, music classes, playtime at the library, or any of those other programs that my friends were doing with their kids, because we had therapy 5 days a week. For an extravert like me, all that loneliness was devastating and I eventually figured out that I had fallen into depression. Even so, I made friends and started creating a support network in the Bay Area. Jenna’s therapists became my therapists, and I know I talked their ears off. I still do.
One of our most trying times in her early years was just before she turned one. She was hospitalized twice in two months for RSV and Pneunomia, the first time for 5 days, and the second for 2 weeks. It was a scary time because the hole in her heart added extra risk, and it was tough to handle without family around. But our friends stepped up to the plate like champs and fed us and walked our dog and sent us encouraging notes. They were wonderful.
When Jenna turned 3, she graduated out of the therapy program supported by the Golden Gate Regional Center, and entered preschool in the county program at Marindale in Terra Linda. Some Moms cry when their kids start school. When I dropped Jenna off at school the first day, she was fine, and I skipped down the hall singing “Freedom is Coming”.
After three years of non-stop therapy, full-time care, and dragging (actually carrying) her with me everywhere I went, I finally had some “me” time. She started getting all her therapies at school and I was no longer involved in most of her sessions. Having 4-hour chunks of time in which to get things done around the house, or take a nap, or run an errand without a child along were pure paradise. I know you all know what I’m talking about here.
Sleep was always an issue. I wasn’t able to sleep train Jenna at the ideal time because she was so small that feedings in the night had to continue until she was 6 months old. I’m not sure it would have helped, though. I’m such a softie and can’t handle just letting her cry. I can count on two hands the number of times in her life that she has slept through the night: She’s 5. So sleep deprivation has been a major challenge for me since the beginning and still continues. We gave up on sleep training after 3 years of trying out of desperation for some sleep for ourselves, and I started sleeping with Jenna in the spare room when she got up in the night.
Our biggest challenges after school started were the arrival of some pretty epic temper tantrums. She is a very strong-willed child, which will serve her well, but it makes for some trying times coupled with her challenges with communication. She developed some annoying (sometimes infuriating) habits like kicking me in her sleep, pinching me to comfort herself or get my attention, and digging in her diaper and smearing the contents all over whatever room she is in. Mostly normal behaviours for kids at some point in their development, but when it lasts for years instead of months, it’s hard to accept. She is also very loud – she has two volumes: silent and deafening. Learning the concept of quiet is slow going.
Now, Jenna is 5. She walks and runs and is starting to jump even though her first Physical Therapist later admitted that she wasn’t sure any of those things would ever happen. It’s still difficult to understand what she says most of the time, but her speech is getting clearer and she’s trying to copy everything we say. It is so much fun to see her growing and learning, and becoming a little girl. She was a baby for so long, we both have some habits to break. She’s not potty trained, and I still end up sleeping with her for part of most nights. She often cries when she wants something before remembering that she can use her words to ask for it. For my part, it takes concentration to let her do things for herself instead of stepping in to help every time. But her independence is growing. She’s a happy, goofy, active child, and everyone who meets her falls in love immediately. For that, we feel so blessed.
I waited much too long to connect with other Moms of Special Needs kids. With such a rare condition, I didn’t think Moms dealing with other diagnoses would have much to offer me. I was so wrong. Now that I have friends in the Special Needs community, I no longer feel so lonely. And it’s not that my “Typical Mom” friends aren’t there for me. They are amazing! YOU are amazing. But you don’t know what I’m going through because you haven’t experienced it. It’s not your fault.
To read the tips we gave to our friends in the meeting about how to relate to us and be sensitive to people dealing with special needs, go here.