My son had an appointment with the pediatrician for a Hepatitis A booster. I specifically requested the pediatrician to discuss a medical diagnosis for autism. She asked so many questions. Can he (my son) do that? Can he do this? I knew what she was getting at. When more of the answers were "no" instead of "yes", I started to feel like a bad parent, like I hadn't done enough to help my son develop. I started to feel the guilt all over again. I started to get mad at her, mad at myself, mad at anything that I could direct my anger towards. I wanted to tell her to stop with the questions, but something inside me kept me from saying that or expressing my anger on the outside. I just kept dutifully answering the questions with some sort of purpose that was unknown to me at the time. At the end of the "inquisition", the pediatrician wanted to refer us for a medical diagnosis at the University Hospitals where I live. She said that it may be a long drive for me (over an hour), but it was the best clinic around. Her immediate referral furter confirmed what I have suspected for the past few months, but I was frustrated for another reason. I thought that we would get the diagnosis over with that day. Instead, the appointment is in June and will last for five hours, and he will be seen by four (or five) different specialists. I can be impatient, and this is one of those times. I want it over with, now!
Later that day, we had another meeting with the early intervention specialist, and that went fairly well. He had a full-fledged meltdown when we took his stuffed gorilla from him. We wanted to see how he would react and tried to teach him ways to express his emotions. I will never do anything like that again. Why would I ever do anything that would cause my son any type of emotional or physical pain? I think the early interventionist could tell this, and we didn't try it again. He has made gains in his speech development, but he is still a little behind. His socialization and fixation is what really worries me. I am trying everything I can to help him, but not much seems to be working. I am starting to feel like a failure, and I just want the best for my son. Sometimes, I just want to stop. Sometimes I wish I could give him a magic pill that would make all these symptoms go away. I feel so bad because I can fix a cut, scrape, or bruise. I can wipe away tears when he is scared or sad. But for the first time, this is something I can't fix, and I don't like the way this feels. I can't even begin to imagine the frustration my son feels.
The only positive thing the last few days has brought was news from the early intervention specialist. My local school district has an ECSE preschool. The special-education teacher and school district are a little lax when it comes to registration dates. My son has an October birthday, so he will always miss the cut-off date by a few weeks. But in the ECSE room, they are willing to take October birthdays, either when they turn three or even at the beginning of the school year. My wife and I are soon going for a visit to the school. I don't care if anybody labels my son as a "special ed student" along with the negative stigmatism that may surround it; if it helps my son develop into his full potential, I am willing to do anything. I love him too much to limit his possibilities. I just have to get myself out of this negativity enough to help him, but sometimes, it just gets to be overwhelming.
Later that day, we had another meeting with the early intervention specialist, and that went fairly well. He had a full-fledged meltdown when we took his stuffed gorilla from him. We wanted to see how he would react and tried to teach him ways to express his emotions. I will never do anything like that again. Why would I ever do anything that would cause my son any type of emotional or physical pain? I think the early interventionist could tell this, and we didn't try it again. He has made gains in his speech development, but he is still a little behind. His socialization and fixation is what really worries me. I am trying everything I can to help him, but not much seems to be working. I am starting to feel like a failure, and I just want the best for my son. Sometimes, I just want to stop. Sometimes I wish I could give him a magic pill that would make all these symptoms go away. I feel so bad because I can fix a cut, scrape, or bruise. I can wipe away tears when he is scared or sad. But for the first time, this is something I can't fix, and I don't like the way this feels. I can't even begin to imagine the frustration my son feels.
The only positive thing the last few days has brought was news from the early intervention specialist. My local school district has an ECSE preschool. The special-education teacher and school district are a little lax when it comes to registration dates. My son has an October birthday, so he will always miss the cut-off date by a few weeks. But in the ECSE room, they are willing to take October birthdays, either when they turn three or even at the beginning of the school year. My wife and I are soon going for a visit to the school. I don't care if anybody labels my son as a "special ed student" along with the negative stigmatism that may surround it; if it helps my son develop into his full potential, I am willing to do anything. I love him too much to limit his possibilities. I just have to get myself out of this negativity enough to help him, but sometimes, it just gets to be overwhelming.
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You are an amazing father! We all get stuck in the negativity sometime. Once he gives you that \"smile\" your batteries will recharge. Just hang in there.
Hi. I am sorry for your frustration. I am only a couple of months ahead of you on all of this that you wrote in your journal. My son went to our childrens hospital for his diagnosis 45 minutes away from our house in May. It really wasn\'t so bad, but like you I was in panic mode about this getting over and being done, He was put in a room with 3 other specialists, our person from the early intervention, and me and my husband (5 people). They tried to work with my son and he wouldn\'t cooperate for them at all. He cried, screamed..ect...They warned me ahead of time that they will do things to see how my son would react so they can get idea of what he is dealing with. They did puzzles, trains, just toys but my son would cry and cling to me. (My son actually did better during his second diagnosis then the first). But it only lasted 2 hours. The thing is you have to tell them you really want to know exactly what they think and you are prepaired to handle the truth. I felt I didn\'t get full answers until I showed I was frustrated with them for giving me evasive answers to my questions. Please understand that after the diagnosis they might not be able to give you a plan of action. I think that is what was so frustrating. It wasn\'t until my son was about to turn three (this month April) and went to the school board that they gave another diagnosis and a plan of action. I think your pediatrician was insensitive. They are doctors and look at this not from the sensitive point of a parent speaking about the love of their lives and not just any other kid. I know it hurts. I think this journey with our kids is so hurtful because we hurt for them and feel our heart is being squeezed too tight when we have to admit to the areas they are struggling with. I so understand! I am deeply sympathetic to your feelings and all that you are your wife have to go through at this tough time.
Making progress is sometimes all we have to go on and it is such a long journey to wait and see what our children will be like. I spend so much time worrying and crying over this. I hope you would know that you are not going through this alone. Their are other frustrated parents on this same journey and it is the toughest thing I have ever had to deal with and I am sure you feel the same. I hope you understand that with our children we have to prepair them to live in the real world so to speak. That taking his gorilla seems so hard and harsh but he will have toys taken away from him by teachers, friends etc... that you will have to teach him to be able to cope with give and sharing. I took my son to the store today and had to take a toy to the register to pay for it. He screamed and cred and I realized he didn\'t understand he was going to get it back. It is a learning process we have to teach them. As they get older it gets tougher. My son is about 6 months older then yours. The differences between his behavior and other kids is starting to show. He is not a baby anymore and going to school will be the best thing possible. My son just got into a school with a IEP for speech and language. He will go this fall. But it is a special Ed class for kids that are language impaired. I think we can always have the hope that one day our kids will be able to mainstream into a regular school.
I know it is tough. You are so good at putting your emotions down on paper. What you are feeling is frustration over not having an answers to your questions and things not coming together fast enough. I will pray for you to get some answers.
MYJOY