Posts Tagged ‘Developmental Delay’
Bittersweet Birthdays
My son’s birthday is this week and I am planning a party for him. He will be 14 years old and we are having a Sesame Street themed party with an Oscar the Grouch cake. The party guest will be me, his dad, his younger sister, and his grandmother. That is his limit. More than four very familiar people will overwhelm him. This is what birthdays with severe autism and developmental delay look like for us. When my son was born, I had several friends who had baby boys around the…
Read MoreThe Power of Perspective
A recent conversation left me thinking about the power of perspective. While at a child’s birthday party with my daughter, a dear friend asked me how Jack is doing. Jack is my 12 year old son who has severe autism, developmental delay and cerebral palsy. I got excited to answer her question. “He is good!” I said. Gosh it felt great to finally say it. For the past five years when people asked me about Jack I would stop and think for a moment. Do I give them the real…
Read MoreBeauty in the Broken-ness
The older he gets, I often find myself focusing on the things my son Benjamin struggles with. Because naturally, the older he gets, the harder things become for him. It is a knee jerk reaction to hone in on the difficulties he’s experiencing because as his mother I want to “fix it” for him; I don’t want him to continue to struggle with things most children his age have no problem with. But the fact of the matter is, he will always be blind, and he may or may not…
Read MoreThe Life He May Never Get To Live
My son, Rowan, will be two in January. At four months old Rowan was diagnosed with Tuberous Sclerosis, a 1/6000, rare, genetic disease that causes epilepsy, tumors to grow in all major organs and development delays including autism. My love for him is bigger than life itself. I want nothing but greatness for him, for him to flourish in every way imaginable. And here it is ladies and gentlemen…the “but” we’ve been waiting for: But… But I hurt FOR him. I cry FOR him. I think about the life he…
Read MoreThe Sweetest Boy
I don’t know a lot about other autistic children. Hell, I often feel like I have the only nonverbal autistic child in the world. Which I know can’t be true. But it sure feels that way. When I think about a child having a disorder that affects socialization and language my logical (or ignorant) side always assumed they wouldn’t be sweet. Or crave love and affection. But that is the opposite of Cooper. Cooper is so unbelievably sweet. This kid physically doesn’t know how to be mean. Or how to…
Read MoreCooper Updates at Age 3 1/2
I realized that I haven’t done an actual Cooper update in a long time. I tend to get very caught up in how I feel about all of this and often my posts take on a sad feel. And I don’t want it to be like that ALL the time. Cooper has come a long way. I know that in my heart and need to remind myself of it daily. He is adorable and so sweet and so loving. He gives and gets a million kisses a day. He enjoys…
Read MoreThe Preschool Plan is in Place
I can’t even put into words how great Cooper’s teacher is and how amazing his IEP meeting went. I fell in love instantly. She was the perfect combination of calm, fun, loving and educational. This is the FIRST time throughout this school evaluation positive that I have felt happy. And positive. Jamie and I met in his future classroom with his teacher, 2 speech therapists, 1 occupational therapist, the special education director and 1 classroom aid. First, we sat at a tiny table with tiny chairs. I loved it. I felt…
Read MoreThe IEP Meeting
I have been hiding out. And insanely busy. I can honestly say I sorta like when that happens because I don’t dwell on little things. Like dirty houses or unfinished projects. And then life slows down and I am standing in chaos. So typical. Cooper’s IEP meeting was last week. First, it was 2.5 hours long. In a tiny room, that was way too hot, with 4 people. The people were very, very, very nice. But, it doesn’t matter how nice they are when the focus on the meeting is…
Read MoreCooper Ate A What?
I am a different person lately. I can’t help but think that this is how it should be. I picked the boys up from daycare yesterday and was told that Cooper had am amazing day. He initiated play with the blocks all on his own. And he ate a tuna melt. Um…I can’t get Cooper to eat anything and he eats a whole tuna melt at daycare. And also tried an apple for her. I was walking on air when I left. And no screaming on the way home. Score. And…
Read MoreHolding my Breath During the Good Days
We are having good days. As usual, I am so nervous to type it because I feel like it will jinx it. Cooper is learning, laughing and even improving. I would say around age 2 I started to notice that Cooper either had good days or bad days. I would try to explain it to people but I don’t think they believed me. But now, after creating this circle of other moms like me, I know it is common. Where Sawyer learns something new every single day, Cooper may not…
Read More