Being pregnant for the first time, I didn't know what to expect. As many books as I read, none truly prepared me for what was to come. No one wants to give you a book to prepare you just in case your child has a disability. So we read all these books in preparation for a reality we didn't see coming. Then when our bundle of joy arrives with a disability, we were in a frantic rush to gain all the knowledge we could for someone that was already here.
There is no way we can prepare for all disabilities, but providing all expectant mothers with some basic knowledge can not only get that new mom prepared for what's to come, but also spread awareness and maybe some social changes that will help remove the stigmas associated with children with special needs.
When my oldest was born, she was just like any other baby. She reached all her milestones, but then one day, her progress just stopped. She didn't add any more words or sounds, she didn't attempt to crawl, she walked late compared to her peers, she was potty trained late, and then as she got into toddler age, she still didn't have a vocabulary. She also developed severe stomach issues. I went to her pediatrician numerous of times with my concerns. He brushed me off, stating that kids develop differently. This was my first child and I trusted my doctor. But when she turned 5 and still wasn't talking, he finally suggested we get her tested.
Looking back now, those things were red flags, and they are common with kids with autism. Currently 1 in 68 kids have autism spectrum disorder. With such an alarming rate that continues to rise, bringing awareness to mothers shouldn't be an option at this point. If I would have known a few things about autism when I was pregnant, I would have been better equipped to provide my daughter with early intervention care that is crucial to children with special needs.
Here are some things that I've learned over the years that will hopefully help new and expectant mothers:
Trust your mommy intuition!
We know our children. In a room full of kids, we know when our children are crying. We know their body language. We know when they're hungry or sleepy without them saying a word. If you feel like something is wrong, don't allow anyone to brush you off or tell you that you're over reacting. Trust your mommy wisdom, especially in those first few years. No one knows your child better than you do.
Fight for your child!
Be your child's advocate. Our children with disabilities often can't say what they need, so we have to be their voice. I don't understand why, as special needs parents, we have to fight so hard to get services for our children, but be prepared. Equip yourself with the knowledge and the tools needed so your child can thrive. If you get a no, try again! Change your medical team; I finally did after all of that happened with my oldest. And I changed again when my youngest was born with Down syndrome and her doctor wasn't knowledgeable with her disorder. Be vocal if you need to change your child's teacher. I wish I knew earlier that there are advocates available that will go with you to meetings to help you get what's right and what's required by law for your child. I didn't know I had options. I didn't know my child had options.
We want our children to be on the same level as their peers, but sometimes when you have a child with special needs, that's not the case. Focus on their strengths. My child was non-verbal for a while, and initially I did compare her to other kids her age and wasn't sure why she wasn't progressing as she should. Even after her diagnosis I found it hard not to compare. I learned to see her as an individual with her own set of strengths and weaknesses and learn to celebrate milestones as she accomplished them.
You will be tired and that's fine!
Being a mother is hard. Being a mother of a child with special needs is hard and exhausting. I thought I had to do it all. Not only did I have to make sure that we were at every appointment and meeting, but socially I had to make sure my kids attended all events and I was involved in other things outside of them. And then being a single mother, trying to maintain a home and work full time, I was driving myself crazy. I don't know why I had this notion in my head that good mothers make it all happen. Somebody should have told me that it's okay to rest, time outs are your friend, and to learn how to be comfortable saying no.
It is not your fault!
We all find a way to blame ourselves. We carry our child for 9 months and then, either at birth or somewhere down the line, something happens and our child now has a label. My belief is that we are who we are, and we're all just as we're supposed to be. We all have a unique quality that no on else possesses. We all are special; just some of us require a little more help than others. Being able to see the positive is key.