With of everything that's been going on, Aiden has been meeting with a Child Life Specialist at the hospital. This is a nice, fluffy way of saying Child Psychologist. She has been amazing, and I am very grateful that Children's Hospital has help for us in this way. The last two days, I have had the opportunity to go to the hospital without Aiden, and on Monday, I ran into his specialist and we had a good chat.
She told me that Aiden was going to be okay and that most of his behavior is completely normal for any kid who is almost four and now has to learn to deal with shared parental attention with a sibling.
She told me kids were adabtable and that nothing I was going to do was going to screw him up for life.
She told me the way he's doing play therapy shoed he knew he was very loved, but also showed that he missed attention.
We talked for a bit longer and I asked what to do when things get out of hand and he has a meltdown due to seeking negative attention, because he's not receiving positive attention. She said these words:
"Help Aiden find his words. Don't say, 'Our baby is sick and needs help to get better'... say "Our baby has Treacher Collins Syndrome, and needs some help to be able to come home'. Say... "Our baby is special and will need our help for a while so that she can be safe'. Teach him the real words and he will be able to access his feelings and thoughts more completely."
It was then that I had the sick realization, I haven't been using my words.
At first, we heard the terms Treacher Collins Syndrome and Pierre Robin Sequence thrown around, but not in a way that I associated with our baby. When Sloane was born, it was determined she did not qualify the Pierre Robins Sequence because she doesn't have a cleft palate. I knew this but didn't want to put a label on our tiny little girl. I was much more comfortable just stating the big parts of Sloane's complications. Our baby has micrognathia (a big word that doesn't mean anything to most people). Sloane has issues with her sinuses not being fully formed. Sloane's ears didn't develop correctly and she will need hearing assistance. All of these things add up to a singular diagnosis: Our baby has Treacher Collins Syndrome. And suddenly, we have a name and a word for what is happening.
I saw Wonder. Did you see Wonder? What a movie to come out right as we are starting to understand all of these new things. The little boy in Wonder has Treacher Collins Syndrome. Eric and I watched it together and cried together right after we came home from the hospital with the possible diagnosis, just days before my surgery to deliver Sloane (Eric won't admit he cried, so don't ask him). It made me realize a lot about what may come in my future. Now that she is here- I am beginning to understand many surgeries are in our future. I am beginning to understand that Aiden may feel left out for a long time. I am opening my mind to the idea that my life will be like so many of my clients in the past's mother's lives: I will be a mom to a little girl who is different, and special, and she will change my outlook forever. In my life working with children and adults with special needs, I always wondered: Could I do that? How? Would I be overprotective-and scattered-and so tired- and want to fight the kids who inevitably will not understand my little child's condition, and fight the parents who refuse to teach their children that different is not scary, or bad?
For now, I will worry about today. How I am going to be a good mom to Aiden, and also protect and learn about Sloane. How to have Aiden know he is loved, and how to make sure Sloane knows I am her mother despite not being with me 24/7 and living in a world of surgeries, IV's and nurses. How to keep my house relatively clean, and how I can make sure my marriage stays strong because I've been at the hospital days and Eric has been sleeping at the hospital at night and we have barely seen one another except for a quick kiss in the morning, and the occasional dinner between our shift changes.
Thankfully, I am meeting moms and finding my way, and we have an INCREDIBLE support system. I am now part of several Facebook groups and learning about words and terms I never even knew existed. The moms of children that have special needs are a hardcore crew and I am proud to even be considered to join their ranks. Thank you to so many people for flowers, clothing, gift cards, listening to me cry, coming to see us; everything. My heart is full and I am glad that I have so many people in my life that I know love me and our family.
And I will be better about using my words, so that my son can as well. Our baby has Treacher Collins Syndrome. She will need more help for the next little while than most babies. And it will be okay.
She told me that Aiden was going to be okay and that most of his behavior is completely normal for any kid who is almost four and now has to learn to deal with shared parental attention with a sibling.
She told me kids were adabtable and that nothing I was going to do was going to screw him up for life.
She told me the way he's doing play therapy shoed he knew he was very loved, but also showed that he missed attention.
We talked for a bit longer and I asked what to do when things get out of hand and he has a meltdown due to seeking negative attention, because he's not receiving positive attention. She said these words:
"Help Aiden find his words. Don't say, 'Our baby is sick and needs help to get better'... say "Our baby has Treacher Collins Syndrome, and needs some help to be able to come home'. Say... "Our baby is special and will need our help for a while so that she can be safe'. Teach him the real words and he will be able to access his feelings and thoughts more completely."It was then that I had the sick realization, I haven't been using my words.
I saw Wonder. Did you see Wonder? What a movie to come out right as we are starting to understand all of these new things. The little boy in Wonder has Treacher Collins Syndrome. Eric and I watched it together and cried together right after we came home from the hospital with the possible diagnosis, just days before my surgery to deliver Sloane (Eric won't admit he cried, so don't ask him). It made me realize a lot about what may come in my future. Now that she is here- I am beginning to understand many surgeries are in our future. I am beginning to understand that Aiden may feel left out for a long time. I am opening my mind to the idea that my life will be like so many of my clients in the past's mother's lives: I will be a mom to a little girl who is different, and special, and she will change my outlook forever. In my life working with children and adults with special needs, I always wondered: Could I do that? How? Would I be overprotective-and scattered-and so tired- and want to fight the kids who inevitably will not understand my little child's condition, and fight the parents who refuse to teach their children that different is not scary, or bad?
For now, I will worry about today. How I am going to be a good mom to Aiden, and also protect and learn about Sloane. How to have Aiden know he is loved, and how to make sure Sloane knows I am her mother despite not being with me 24/7 and living in a world of surgeries, IV's and nurses. How to keep my house relatively clean, and how I can make sure my marriage stays strong because I've been at the hospital days and Eric has been sleeping at the hospital at night and we have barely seen one another except for a quick kiss in the morning, and the occasional dinner between our shift changes.
Thankfully, I am meeting moms and finding my way, and we have an INCREDIBLE support system. I am now part of several Facebook groups and learning about words and terms I never even knew existed. The moms of children that have special needs are a hardcore crew and I am proud to even be considered to join their ranks. Thank you to so many people for flowers, clothing, gift cards, listening to me cry, coming to see us; everything. My heart is full and I am glad that I have so many people in my life that I know love me and our family.
And I will be better about using my words, so that my son can as well. Our baby has Treacher Collins Syndrome. She will need more help for the next little while than most babies. And it will be okay.
You guys are amazing. Thank you for sharing your journey with us. The world is already better because of sweet Sloane.
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