I have been a parent for nearly 17 years. During the first two years, all I ever heard in public were statements along the lines of, "Your son is so quiet and well behaved. I wish my kids were that quiet." They were well meaning people, admiring my parenting skills. Still, the words held a sting worse than any wasp. My son was nonverbal, off in his own world of Infantile Autism. I would simply smile and move away.
As my son grew older, his symptoms became much more obvious. He hummed, paced, and flicked his fingers or drummed his flexible bending straws. For about two years, public meltdowns were rare..but they happened. Mostly, people looked at him and us with that look of pity. Some looked at him and our family with disgust and fear. Those people usually offered up the ever so unhelpful, ignorant advice of..."There is nothing wrong with him that a good spanking wouldn't fix." Anytime Alex is a little too autistic for someone else, their reaction was usually quite verbal..."discipline your kid". These people clearly had never cared for or even spent time around someone with Alex's type of Autism. There isn't an autism expert, medical professional, teacher, or therapist that hasn't praised me to the moon and back for just how well behaved Alex is.
This past weekend, my family was at a VERY busy and crowded portrait studio. Infants, toddlers, and teenagers were everywhere (the pre-teen crowd must have been at the mall, chasing down Justin Bieber posters). Parents had frustrated looks on their faces and the studio staff seemed hopped up on 5 hour energy and Botox smiles. The studio was about 30 minutes behind schedule so we let Leyla (now 2.5 years old) and Alex walk around the window treatment department while I kept baby Sam (yes, I have had a baby) asleep in a quiet corner. The stress and over-stimulation of everyone was pouring out of the studio. Leyla was not unaffected. When we finally finished our session, she was wound as tight a new spool of thread. She was running, jumping, and shouting at everyone. I didn't want her to hurt herself. I didn't want her to annoy other adults and I certainly didn't want her to get any other kids over-stimulated. I asked my husband to take Leyla, Alex, and Sam to the car while I finished up with the studio.
Another woman said loudly, "She is fine. She is just playing." I didn't think much of it. Maybe she was talking about her own kid. She couldn't have been talking to or about me because I am the parent that should be spanking my autistic son when he flicks his fingers and hums.
Late that night, my husband said that a woman stopped him on his way to the car to say something like..."Your little girl is so beautiful and sweet. She wasn't misbehaving back there. She was just being a toddler. I don't know what her mother was thinking." Then, she proceeded to tell my daughter that she was beautiful and extremely well behaved.
Holy sheep poo! Really? I send my overstimulated child to the car so she can calm down a bit and not get the other kids worked up and I am criticized for it?
Let me offer up some advice here. Barring abuse and/or neglect...it is not anyone's place to tell me how to discipline or raise my children. I would NEVER walk up to another parent and tell them what hundreds of so called "concerned citizens" have told me. I am starting to think that some people leave their house and venture out into the community just so they can offer up judgement on everyone else.
If your going to judge others, make sure you examine yourself as closely. It is rude to stare. It is rude to point and whisper...you are seen and heard. Your not as subtle as you think. It is unacceptable to tell strangers how to raise their kids. If the problem is bad enough, call the police. If it isn't bad enough to report...mind your own business and stop being a hypocrite.
It was a long, hot summer filled with fear, frustration, stress and sadness but with the cool breeze and chilly nights of Autumn weather, other changes are taking place in our family.
Alex is back in school, much to his dismay. He continues to have problems with loud noises and frequently misses out on group activities and gym. For exercise, he often walks several blocks with his one on one aide. We have even seen a little weight loss. Now, if I could just remember to lock the freezer in the afternoons and evenings...we might see real progress. He has mastered the use of Netflix on his Wii and is showing interest in the iPad, which is way out of our budget. We finally got him to use a public restroom but no progress with BMs. I refuse to give up though! I know he can do it!
I must admit that we are cheating a little on Leyla's speech therapy. We are getting services in the private sector and Early Intervention. We will only be able to keep it up for another week or so. As soon as the insurance company sees two bills for the same services, we will have to pick one and drop the other. We started off leaning towards private therapy, but Leyla seems to respond better to the Early Intervention therapist and she comes to our home. It looks like we will be keeping her. We have seen a few signs for "more" and "please" and she regained one word. We even thought we heard her try to say "bubbles" today! We will get developmental therapy just twice a month for now, so I am doing a lot of behavioral stuff on my own. Leyla will start a play group at the end of October and we are really hoping that will give her the push she needs. She still has good eye contact, brings toys to us for shared attention and to play with us, and she enjoys cuddling. There are no obvious indicators of Autism at this point but all with experience know that she is still in that window. Right now, she has a 31% developmental delay and a 44-55% language delay.
I always feel more energized in the late autumn and throughout winter. The changing of the leaves, brisk air, and white blankets of snow always give me a sense of hope. Meanwhile, spring and summer leave me standing on a ledge of fear and despair. How odd is that?
This summer has been tedious at best. I foolishly enrolled in three courses for 7 credit hours. I got all A's, but I spent far too much time on school and not nearly enough time with the kids or the house. I am working hard to remedy both. I had registered for 3 Fall semester courses, but I dropped one because I think I am going to have my hands full with my daughter for the next several months and I don't want to neglect her needs.
My baby girl's 15th month has come and gone and she has lost two of the three words she had at 13 months of age. I scheduled an appointment with her pediatrician but that isn't for another week. I called Early Intervention, which is a joke in this state, and got that ball rolling. We have been assigned a service coordinator and are waiting for a team to call us and schedule a few evaluations. I am thinking she will get a developmental assignment and speech evaluation to start. She doesn't seem to have any delays in her motor skills nor does she seem to have any sensory issues, so I am not yet concerned with getting an occupational assessment. Hubby and I are bracing ourselves. We feel there is a very good chance L will be diagnosed with Autism by the end of the year.
Our emotions are all over the place. We both seem to be trying hard to think about anything other her language delay. We try to focus on the positive. There are also days where we just hold each other and try not to cry. I am back on an anti-depressant and eating less due to my anxiety induced tummy troubles. I have lost nearly 10 pounds in the past month.
Of course, we always knew this was a possibility but we hoped and prayed that L would not have Autism. We still hope and pray that it is just a speech delay and therapy will help. We had been talking about trying for another baby but now we are in a holding pattern.
The summer semester is in full swing and I am hanging on by a thread. Still, at least I am hanging. I will never take three classes during summer semester again. In fact, I am thinking I might cut back to six credit hours this fall. Balancing a house, two kids, two dogs, a husband, and school isn't easy and I have enough gray hairs. This has not been a summer of swimming, sightseeing, or even sleeping.
On top of it all, I have new "mama drama". I spent the past six or seven weeks trying to call my mom but she never answered...until yesterday. I asked her if she had disowned me (as opposed to just emotionally abandoning me at birth) or if she was dead. No. She is alive and well. She just moved 600 miles to be within blocks of my sister (who she has neither disowned nor emotionally abandoned). My mom up and walks out on a mortgage, abandoning her house. I informed her that when people move, they usually call their children to inform them and give them the new address and phone number. I reminded her that she had 3 children and not 2. I even went so far as to ask her when she planned on sending a postcard saying "Glad you aren't here". She actually laughed. Yep, that is my mom.
i am not sure about this chatboard thing, but i since you get sooo many comments, i thought you might notice this as different (i will post it on your regular area as well, just in case)....i would love to pick your brain a bit....i am a special education student and would like to ask a few question
Where: In a frenzy of excitement! When: 1992 It was the Friday after Thanksgiving. I had just taken a test, and ACED it by the way! I was very excited to get out of school that day. I had a mission. I got out early...around noon or so. Through alot...and I mean ALOT...of logistical nightmares
It was the Friday after Thanksgiving. I had just taken a test, and ACED it by the way! I was very excited to get out of school that day. I had a mission. I got out early...around noon or so. Through alot...and I mean ALOT...of logistical nightmares with renting a car, me and a buddy of mine got