From the last post until Tristan was about the age of two and a half years old were really a blur in my mind. We moved during that time from North Carolina to Maryland. This time was marked by hours upon hours of speech, occupational and physical therapies for Tristan. He seemed to us to fall further behind. I was pregnant with Keira, our second child, who was born March of 2007, and we moved to Maryland that following August. It was some of the most stressful times of our lives and marriage. The following are a compilation of emails and notes from that time that show some of my frustrations and thoughts of this period.
This afternoon, Michael and I were talking, and it suddenly hit us that Tristan is not getting better, but worse or simply staying the same. He seems like he is about a year behind in nearly every developmental milestone he should meet. I feel extremely guilty even though I should not, but I wonder if I could have done something different during my pregnancy with Tristan. Family and friends say I just need to socialize Tristan more, or maybe he needs more of this or that. I know they mean well. I tell them I tried the play dates many times, but what child or parent wants to play or let their kid be around a child who just screams at everything that overloads his senses? He seems sometimes like he cannot handle the world around him. Most of the playmates we invited no longer come or their parents outright told me they do not want to play with us. I do not blame them one bit, but inside my heart aches wondering WHY? What could I have done differently to prevent all this struggle Tristan endures? I hate all of those stares that say “What is wrong with your child? Can’t you control him? Can’t you make him stop? Or, you poor thing, to have a child like that!” . . . I HATE IT!
Today, we went to the community pool where there is a baby wading pool. Tristan screamed hysterically, and did not even want to be in the water because the floating pool toys scared him. He was happy when he stood at the tables and watched others have fun. I am so frustrated as a parent to watch my son sit on the sidelines of life while others are so willing join right in. While we were there his pediatrician showed up with her children, and I talked with her for a couple of minutes. We told her speech was a help, but it was a very slow process. We planned to make an appointment this week to see her in the office so we can talk more about what is going on. She said it could be time for him to see a developmental pediatrician.
Michael and I are beyond frustrated, because we try to do everything right to raise him. We read to him, and have done so since he was a tiny baby, because he LOVES books. Books are his favorite thing to play with. He does not watch much television, and when he does it is some sort of learning show. He likes to cook with me all the time, he helps me do laundry, he puts away his toys, and he is my big helper in general. Yet, he cannot talk, but instead screams, grunts, and throws toys in frustration.
Deep down I know he is smart, but he acts like a caged wild animal at times. It breaks my heart to see him like this. Now that I have Keira it really hits hard to know how behind he was and still is. She is already far beyond where he was at the same age. She baby talks a lot already at three months of age, and is much stronger than he was at that age. I know he physically has endured much with his Albright condition, but it still makes me feel sad to see him so behind.
I know in my head there was nothing I could or should have done differently during my pregnancy, but my heart at times is consumed with guilt. Michael tells me I do not need to feel guilty, because I did nothing wrong, and I know he is right. I sometimes wish he were just a normal kid, because it exhausts me sometimes to be his mother.
The Cecil County Infants and Toddlers speech evaluators just left, and I am totally depressed. They did not tell me anything I did not already know. Speech-wise, Tristan is at about a 10-12 month level, and cognitive-wise he is anywhere from 23 months to 30 on some things. He is now about 36 months of age. He is very behind, particularly in speech skills, but we already knew this. They said what we have been doing is what we should be doing. I am not sure then why he has not progressed further than he has. Well, I can only be depressed today, but after today, I need to take that negative energy and make it work to Tristan’s benefit.
Next Wednesday he is going to see a developmental pediatrician at Kennedy Krieger Institute in Baltimore. I hope they can give us more direction. We have occupational and physical therapists from the county this week who will access Tristan to see if he also needs these services. It is so exhausting to be the mother of a special child, and there are days where I wish I did not bear this burden. I know in my heart I would rather be his mother than anything else.
Please keep us in your prayers as we try to get our son help here in Maryland. So far, I feel extremely blessed because his primary care manager at the Army post has a daughter with Down Syndrome. She completely understands the difficulties to care for a special child. She has not fought with me on any referrals I have requested for specialists. We were also bumped up from a 3-5 month wait to just a little over a three week wait to get into Kennedy Krieger Institute. His pediatrician in Raleigh is also bending over backwards to help us get him into the various programs as she fills out tons of forms for us and sends records all over the place. So, overall I really cannot complain other than I simply wish my little boy did not have to fight so hard in life. Thanks for all of your prayers and thoughts for us.