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+--- Thread: From Desperation to Joy (/thread-459.html)
From Desperation to Joy - A'sMom - 10-16-2011
I'm excited to have discovered this site, because I feel that this has been such a confusing and isolating journey. I'm looking foward to not feeling so alone.
My daughter is almost 4 and 1/2. I started questioning some of her behaviors shortly after she turned 2. At 2 and 1/2, the school district evaluated her and offered her special ed for autism spectrum disorder. At 3, we got a medical diagnosis that said yes she had attributes of autism, but didn't have autism. The therapist did agreed with me that A had sensory issues. So we had her evaluated for that and she was diagnosed with SPD. We immediately started OT twice a week. That was over a year ago.
Everyone said that because we caught it early, so much could be done to help her, but most days it's hard to believe that anything we are doing is helping. I'm feeling particularly hopeless this weekend - A was sent home from pre-K because she was out of control (throwing toys, hitting, bitting and kicking) - I am currently coming from a very desperate place.
But there are definitely moments of joy...A has such a wonderful imagination and joining her in that world is amazing. We put on puppet shows, we make up stories, we sing with to each other, we play dress-up and have just amazing conversations. There are days that I am in awe of how her little brain works and how she connects the dots of her world.
A also has a 2 year old little sister, V. I think they have a typical "sisterly" relationship - some moments they play together beautifully and other moments they are at each other's throats. I do worry about V: I feel like her life comes second to A's SPD. I think about the time she spends in the car going to A's appointments and classes, the time she spends in the waiting room at OT, how A's sensory needs take priority when we choose what to play, and how V is often encouraged / forced to compromise to allow A to do what she wants / needs to do.
My husband is a great dad. He has wonderful times with our girls. But the SPD has been very hard for him to deal with. It took him almost a year to believe that it was a real thing and believe that A had it. He still can't believe that the "little things" she does and plays at OT actually helps. It is particularly hard for him to understand and be patient with A and her behavior.
I keep hoping that life will get easier, and I 'm having the adult realization that life never gets easier. But I am trying to control how I view my life. The feelings of desperation are easy to wade in, but everyday I am doing my best to embrace the joy.
RE: From Desperation to Joy - LynnNBoys - 10-17-2011
Hi, A's mom! I think I could've written your post! Except that I have 2 boys and my older son was diagnosed when he was 6, in 1st grade. He also has some autism traits but not enough to be on the spectrum. He has SPD and anxiety. My husband also has a very difficult time believing in SPD and OT. He sees the anxiety and seems to be better able to accept that than the SPD.
My younger son has also been carted around to all of his brother's appointments. But try to remember that it would happen no matter what with the second child. Whether it's being brought along to a soccer game, dance recitals, or OT--the younger child is going to be toted around with older sibling. And when she is older, she'll have her own activities and her older sister will be the one tagging along. Try to not be hard on yourself for that.
I found the ages 5 and 2 years difficult. Before then, my older son would grab a toy from his baby brother and younger wouldn't care. But once he hit 2 years or so, he did start to care. He would hit his brother if a toy was grabbed from him, then big brother would hit him back. It was a difficult time for us. Plus we were starting to figure out that something was wrong but didn't have any answers yet. It got better once my younger son was 4 and older was 7. Then they could do more things together. But they still have their moments. I guess they always will, as siblings tend to do.
I felt like we spent a lot of time focused on our older son from when he was 5-6-7 years old. Dealing with evaluation, diagnosis, treatment, getting IEP/504 meetings and plans at school, working on his sleep issues--90% of our time seemed to be about our older son. I did feel bad about it too. But then once he got to be about 8, things got better. We were seeing progress at school and at home. He started sleeping better, he was catching up to his classmates, he was maturing, and he was coming out of his shell.
And now my younger one recently turned 7. He's been showing increasing signs of SPD issues. But in different ways from my older son, so I almost feel like I'm starting over and learning this all again!
I hope you'll find this site to be a refuge for you when things get overwhelming. You're not alone!