When Bubba was first diagnosed there were a million thoughts, feelings and fears that ran through my head. I didn't know anyone who had a child with autism and I certainly had no idea what we would be in for. I often wished there was someone out there who had gone through this who could give me tips and ideas, and just plain out tell me what I was in for. since I never found that, I'm writing mine out now for all the newly diagnosed families out there who might come across this one day.
You just might meet your best friend in this
Early on in our journey, I felt alone. I felt like I was the only mom with a child like mine. I was lucky enough to meet a mom of one of the other boys in Bubba's Special Ed preschool. She has become my best friend. We have been through so much together in the almost 6 years we have known each other. Having a mom friend who goes through the same stuff I do has been a godsend.; So often in this life we lose friends from our pre-diagnoses life. They often just can't handle the extra strain our children can sometimes put on our lives. We are not as able to go out as easily as we were before. Finding a sitter for a special needs child can be difficult and sometimes just not worth the extra stress. We often feel guilty about leaving them, knowing the problems that could arise, so we tend to just not do it. Finding a friend who also has a child with ASD has made things easier. We both understand when the other has to cancel due to a child in mid meltdown. We get that when we show up to the others house the kids will more than likely be running around buck naked and that's OK. the house will be messy and there might be pee on the floor, or eggs, or whatever the child has found to make a mess with, (because I guarantee you, they will,) and that too is OK, because we get it.
You might need to become a detective
When Bubba was a baby he cried when he needed something, As he grew he learned other ways of communicating his needs. Sometimes he would lead me by the hand to where what it was he wanted was located. Other times he would just point and grunt at it. This is where I had to learn to be a detective. Determining his grunts was not always an easy task. We spent a lot of time asking him YES or NO questions. Sometimes to no avail. He would get upset and give up. As he has continued to grow his forms of communication has continued to change. When we are out in public he will start doing a high pitched
squeal thing when he's overwhelmed and needs a break, or needs to just
get out of there.when his behavior at home starts to change we have now learned that it might be a clue that something is up with him. recently he has started to act out. scream and be more moody than usual. We have discovered that this may be due to a toothache. He has been saying his dentists name too, So I looked in his mouth and noticed a tooth that may be bothering him. He has an appointment to be seen later this week.
It's OK to fear the diagnoses.
when my son was 18 months old, he started to lose all of his milestones. He stopped walking, talking and didn't want to be touched or held anymore. He started focusing on spinning objects and stacking blocks. I started researching and kept coming up with the same word. AUTISM I learned everything I could about it, but I still had no clue what it really was. I took him to the doctor and asked for an evaluation. A couple months later after 4 hours of evaluations and tests, they came back with what I already knew. He had AUTISM. I had hoped I was wrong. The next few months were a blur. I knew we had to take action. The earlier they get services the better the outcome, right? We signed him up with early intervention and the journey was just beginning. I didn't like it. I had so badly wanted to be wrong.
You'll learn more about trains and elevators than you will ever want to know.
Two years ago my son had a seizure, fell and hit his head. He was OK, but he needed stitches. The day after I was a tired mommy, due to being up all night worrying about my concussed child. He was playing on the computer in the dinning room while I was cleaning the living room. After hearing ELEVATORS for the 1 millions time. I told him to just Google an Elevator. Worst advice EVER. He did it. He was watching YouTube videos no more than 30 seconds later. He has gone through fazes like this before. In the past it has been about Pixar, Taco Bell, Wendy's and The movie Wall -E. he finds something he likes and he watches everything he can find on the internet about it, till he finds his next interest.
At times You might not like his AUTISM, but You will ALWAYS love your son
Some days the stimming is so bad it's all he's doing, or the screaming is so bad I think I'm going deaf. These are the days when I might not like his Autism. That's not saying I don't like my son, that's saying I don't like his autism. The part of him that makes him miserable, it makes me miserable too. When I've just about had enough I need to remind myself that he can't help it, it's not him, it's Autism. He doesn't want to feel like this, he can't help it. When he was 3 I lost my job and suddenly found myself a stay at home mom. The whole previous year I had been going to school and working full time. I saw my child for maybe an hour a day. I didn't know how to be his mom. It really was a learning curve for both of us. I cried a lot that year. He would spend hours screaming for reasons I could not figure out. At times I would have to lock myself in my room and cry. I would call my hubby at work and beg him to come home. I couldn't handle it. He would always remind me to breathe, he would tell me YES, I COULD DO IT. because I was his mom. and I was the only one he had. We eventually learned how to work together, and the 5 years I spent being his stay at home mom was truly amazing. We still have days like we did when he was 3. Sometimes his behaviors are so bad, I just want to leave, but I can't. taking time out helps. understanding he is having internal issues I can't see or understand helps.
There is a lot of support out there
In the third year of our journey I came across a flyer that had been sent home in Bubba's backpack.It was for a dinner event for a local Autism moms support group. He was in Kindergarten at the time and I was desperate for other moms who knew what it was we dealt with every single day. So I called up the best friend who also has autistic kids, and told her we were going. She needed this as much as I did, so I wasn't letting her back out of going. On the night, we showed up to a local restaurant not having a clue what we were in for. Recognizing only one other mom from Special Ed preschool, we sat at this giant table with 15 or so other moms. As the night progressed we laughed, we cried and most of all we knew we were not alone anymore. If your local area doesn't have a support group, I highly suggest starting one.
Do you have a child with autism ? what are the things you wish someone had told you ?
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