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Hi - jacobsmomma - 07-20-2010
My handsome, sweet son just turned 3 this past May. About a week before, he was approved for OT, PT, Speech Consultation and Special Education services to address his special needs. Technicially, my son was never diagnosised with Sensory Processing Disorder, ADHD or any other condition. We are currently on several very long waiting lists to see a developmental pediatrician. I, however, know my son has SPD. That used to be really hard for me to say out loud... or even to myself. He son never developed "normally." He didn't roll over, crawl or walk on time. And, there was always an insane amount of drool on his bibs. His pediatrician ALWAYS dismissed my concerns. He did achieve the same goals as other children but much later. It still never occurred to me something was wrong; I just felt like a failure as a mother. I felt as if my short comings caused his delay. I'm still trying to cope with that. He started to receive Birth to 3 services when he was 18 months old. It helped but not enough. My husband and I were working full-time, so my son was going to daycare during the day. He struggled so much. I got "incident reports" everyday about his bititng, hitting and other aggressive behavoir. The Birth to 3 OT used to go to school to talk to them about strageties but the daycare didn't take it too seriously. That was probably because I didn't take it seriously. Friends and family (including my husband) kept telling me there was nothing wrong with Jacob and it was in my head. My husband used to say that "I wanted something to be wrong." So I think that stalled some much needed services. We did go through the motions of Birth to 3, but he probably could have gotten alot more out of it. Because of his issues at daycare and because his special ed school is only 2.5 hours a day, I had to quit my job to be home with Jacob. Some days are such a struggle. Some nights after he goes to bed, all I can do is cry. I feel so inadequate. At least at my job, I got a "thank you" or "good job". I never get that at home. I know it is his struggle, not mine. But sometimes I am not sure if I could make it through the day. I love my son with all my heart. He is the only thing I always knew that I always wanted, but somedays are really tough. Today was just one of those days.
I never intended to write all of this. I just never had anyone to talk to about it. Thanks for reading my story.
Jackie.
RE: Hi - Dani - 07-20-2010
Hi Jackie
. Welcome to SPD International.I'm sorry to hear about the struggles you have been through up to this point with your son Jacob. It's unfortunate, but this is not a new story to me at all. Any of it; the feelings of failure and inadequacy, the disbelieving family and doctors, the blame, the guilt.... all of it. I have heard that many times, and it never ceases to aggravate me.
Here's what I can tell you though, and it's what I tell pretty much any parent I come across who goes through that: You are doing a wonderful, amazing job, so keep it up
. Honestly, you do have a special needs child, whether others choose to believe it or not. To me, the very fact that so many people don't believe it is an indicator of just how private and difficult this disorder is to live with. Heck, not even everyone in the same household necessarily believes it. It's real though, and I'm sure you are encountering it with your son.I wish you the best. Please stick around and get to know people here.
Do you have any other interests? Hobbies perhaps? We're here to get to know you. It helps to feel like you really know the people who are offering support. You also need to remember to take some time (whatever you can find) to yourself.
Hope to see you around the forums. Best wishes. Thanks for posting and sharing all of this with us. Again, welcome.
-Dan
RE: Hi - mawkinberd - 07-21-2010
Wow. I am thankful that you shared your story with us. I agree with D1G1T 100%... your son has special needs. And believe me, I know about being dismissed out of hand, that knowing look and shake of the head as doctors dismiss your concerns. But you have an amazing gift of nature; you are a mother. And you know your son best. To stay home with your son is both a great gift and sacrifice, and I know that even though your son doesn't know that now, he is reaping the benefit of that love and attention.
I look forward to hearing more from you on this journey. Perhaps we can hold hands and help each other through the puddles.
RE: Hi - beck7422 - 07-22-2010
I hate it when people/doctors dismiss a parent's or patient's concerns just because they don't know the answers.
Thank you for spending the time to help your son through this challenge.
It is vital that you still make sure that you do the occassional hobby or fun day for just you. It can't be just all about your son 24/7 or you will eventually burn out.
RE: Hi - jacobsmomma - 09-11-2010
Thanks so much for the replies and support; I really appreciate it. What is kind of crazy is that it was taken me this long to pull myself together enough to read the replies. I am really trying to work on that because I really need this type of support/ discussion group.
I wanted to update anyone who is interested: my son and I had the MOST AMAZING summer together! We went everywhere together including new places, parks, the zoo, malls, etc.. I have accepted that fact that I cannot anticipate or control everything in his environment. I do the best I can and we just "roll" with whatever happens. Now that I am ok with his reactions; it is almost as though he is reacting less. We just do our best to make adjustments and move on quickly. He is so amazing, and I am so lucky to have this extra time with him.
I also go to the gym now about 5-6 nights a week after Jacob goes to bed, which also helps. My husband used to go fishing and play in a pool league at night, but he knows I need the time to myself. I am so thankful he is becoming more understanding everyday.
We still have bad days, but things are steadily improving and going in the right direction. I am so thankful for the strategies that help us everyday. They have made all the difference in the world.
Jackie
RE: Hi - beck7422 - 09-12-2010
Glad you are getting some down time for yourself and rolling more with what life serves up at you. This skill helps at more than just dealing with your son. It is a vital skill for dealing with any kind of stress.
Some SPD individuals sometimes seem Empathetic. I know I "feel" the pain and anger around me and it makes me worse. I also "feel" excitement and happiness and that makes me better. At a young age I learn to cheer up the people around me so that their presence made me feel better instead of worse.
My sister is a giant ball of negative energy (she hates all of human kind and at best views them as tools for her to manipulate), being in her presence (even if she isn't speaking) is exhausting and upsetting. Even non-sensitives are affected by her negative energy. She got thrown out of a Yoga class because of it even before the class started and she hadn't even said anything.
My point is, since your child is sensitive to the world around him, by you being more calm and relaxed it allows him a better chance to reflect that.
Hopefully your child will learn coping methods that allows him to affect the moods of others so that they are no longer causing him as much pain.