My second son, Anthony (Boo), was diagnosed with severe expressive speech delay shortly before his second birthday. I noticed Boo’s language development was significantly more delayed than his brother Kevin’s, but I kept attributing it to Boo being a late bloomer.
I mentioned my concerns during Boo’s well-baby doctor visits, but his pediatrician (who is wonderful, I might add) didn’t want me to obsess over deadlines that baby Web sites had set. I let it go, but something was nagging at my heart. By the time Anthony was 15 months old, he was barely beginning to babble, and he still couldn’t say “mama.” By this time, Boo’s pediatrician agreed it would be wise to have him evaluated.
At first, autism was a concern. After countless appointments, meetings, mounds of paperwork, and several months of waiting, Anthony finally got his diagnosis: severe expressive speech delay. More important, he got a referral for intensive speech therapy. John and I were relieved that Boo was getting the help he needed.
The bad news? Boo still had some residual speech delay when he aged out of the program at 3 years old. Unfortunately, it wasn’t enough of a deviation for our local school district to take over therapy. Speech therapy is considered a luxury service if the speech issue isn’t accompanied by some other type of developmental delay. The good news? Anthony’s ability to articulate words has improved quite a bit in the past two years. You would never know he had a language development issue if you were to talk to him today. He is starting kindergarten this fall.
Prepared to Fight for a Child With Special Needs
We’ve come a long way since Anthony’s diagnosis, but I distinctly remember feeling overwhelmed as I ventured into uncharted territory. The appointments, the home visits by the social worker, the hearing and speech evaluations were all much more than I initially expected. I naively thought a referral for speech therapy would be easy, but I started to learn otherwise as I navigated the system. That was when I learned you have to fight to get help for children with special needs.
Our social worker was wonderful, but it was emotionally straining to not have parents in a similar situation to talk to. The parents in Anthony’s class, myself included, weren’t a very social bunch—we would all stand around quietly until our children were let out from class each day. Sure, our kids were being treated, but what about a having a support system for us parents?
When Niki was diagnosed with her bleeding disorder, I feared the same thing. I thought John and I would have to deal with everything on our own. It was a breath of fresh air when we started to meet other parents in the bleeding disorders community. The very first mother I “met” with children affected by factor VII deficiency reached out to me from a post I placed on the National Hemophilia Foundation’s (NHF’s) First Steps discussion group. She even took me under her wing and taught me to navigate my way through our first NHF Annual Meeting last October. I am attending this year’s Annual Meeting feeling like a pro, and I owe it all to her.
Thanks to the HemoMoms
So many other HemoMoms I’ve met along the way have been equally supportive. Veteran moms have openly shared advice and tricks of the trade that our medical providers or social workers just couldn’t give us. Doubling up on diapers to prevent bruising, using wrist sweatbands for knee protection, and finding loopholes to get home-based care were all important bits of knowledge that fellow HemoMoms gave me. We all know knowledge is power, and I couldn’t have asked for a better group of women to help empower me every step of the way.
Read more about Tiffany's life at The Art of Lion Taming.