I was reading a post at MommyPants and it reminded me of some things I have had to deal with over the course of Kiddo's life, especially regarding some of his issues.
When Kiddo was very small, I started having massive pains. When I brought him in for a checkup, the doctor was very concerned about me. Why? I had bruises all over my arms. I mean, ALL over my arms. They were also all over my legs. There was a reason for it - I had been in the emergency room for pain from my gall bladder and they couldn't find a vein to draw blood. I was poked literally 13 times, including in the top of my foot and side of my legs. Several of the bruises looked like someone had grabbed me.
So, the conversation went a little like this:
Dr: "Is everything OK at home?"
Me: "Yes, why?"
Dr.: "Are you sure?"
Me: Yes... why?
Dr: "Look, I understand that you're young and sometimes it's scary to talk to someone about these things but if anyone is hurting you...
Me: "huh?"
Dr.: "The bruises... is your husband hurting you?"
Me: (hysterical laughter) "No hahahaha... I went to the hospital and they couldn't get a line. If you look really closely, you'll see a needle mark in the center of the bruise"
He finally believed me but I should have taken it as a sign that conversations questioning me and people (ahem! doctors) not believing me would be commonplace.
As I watched Kiddo grow, I noticed some... quirks.
For example, when he was about a year old, he would arrange thing into patterns or designs. He NEVER put anything into his mouth that wasn't edible. He vomited any time I gave him meat or a strong flavored veggie such as green beans (I know, it's technically a fruit. shush). He couldn't be held up in the air or played with in the way that small children generally like. His entire body would become rigid and he would be silent until he calmed down enough to scream. Sometimes he would stop breathing. He was easily frightened by sounds, lights, movement and textures.
The doctors said "Don't worry about it. Kids go through phases."
Just before his first Christmas (a month before his birthday) I put him outside on the grass. He was wearing sweatpants and I wanted to get some pictures of him crawling on the ground outside. He didn't like the feel of the grass. In fact, it was so awful to him that he would touch it and recoil.
I tried to get him acclimated to the grass. I rubbed my hands on it, then took his hand and gently pressed it onto the grass. This made him wail like I'd never heard before.
I took his hand and gently swayed it back and forth on the grass. It had not been cut in a few weeks so it was very soft.
He cried even harder.
After he calmed down, I moved away, trying to let him explore and crawl.
Had I known then what I know now, I would not have done that. Little did I know that I was simply torturing him. I think I have it on video, too! He simply sat there and cried until I took him inside.
The doctor said "Don't worry about it. He's just a cautious child"
Right after we moved back to the motherland, he was about 18 months old. I watched him place pennies on the ground. He lined them all up, all were heads up and he moved Lincoln's head to where they were all facing the same way. Everything was identical. I thought maybe he had Obsessive Compulsive Disorder.
He never learned his colors. I couldn't understand why. He kept confusing green with brown and red and yellow and orange. What? REALLY?
I just thought his favorite color was green or he was messing with me. Half the time I would ask him what color things were, he would giggle and say "green" like I was stupid.
One day, he asked where one of my dad's cat's had gone. He said "the one with no tail". My dad said "Oh, Hobart?" and Kiddo said "The green one". My dad said "He's not green - he's peanut butter color". Kiddo said "Yea! Peanut butter green!" (Said like he was saying "DUH")
I think this is what it looked like to him
I started looking online about being color blind. I told The Jerk but he didn't believe me. He said "You're trying to make something wrong with our son".
Eventually, it was time for him to have a checkup at the doctor's office. I talked to him about it. The Jerk was with me. Kiddo was 4, I think.
The doctor (new doc) said "Well, it's unlikely and kids his age don't usually show symptoms of it but we can test it"
Yep. Color blind.
We later found out that he sees no red whatsoever, meaning that he has a severe form of color blindness.
He was still vomiting with meat and all vegetables. We had to supplement with pediasure and try to make sure he had enough vitamins in his diet. Sounds bothered him. He seemed overly sensitive. He didn't run or walk like other kids. He seemed awkward. He still became easily startled and would sometimes fall at certain sounds. He would cry and scream and run away with his hands over his ears if he heard other sounds - such as a lawnmower or someone shuffling their feet. He could speak perfectly fine - better than most children...
He couldn't figure out how to use a cup until he was well over 3 years old. He would tilt it back and it would spill on his face and he would make the "OMG I'm being drowned!" face... Which was the same face he'd get any time I tried to wash his hair (even if no water went ON his face).
The doctor said "Well, all kids develop at different ages. He's advanced in some areas. Let's give it some time"
He has difficulty with balance and things such as riding a bike.
I kept telling The Jerk that something was wrong. I told him something was wrong each time he would vomit. Each time he would get upset over something that I felt was abnormal. Each time he would be clumsy in a way that seemed wrong.
Trust me, I KNOW clumsy. His isn't regular clumsiness.
It took me almost 9 years to convince The Jerk that something was wrong. It was after we got divorced and D's mom looked at me on one visit and said "Have you had him tested for Asperger's?"
I didn't even question what she was saying to me. I had suspected he had it for quite a while. I mentioned it to The Kiddo's psychologist and she agreed that he shows tendencies. She gave me the name of an OT/PT place for kids that could diagnose the problem.
I told The Jerk. His exact words were "Stop TRYING to make something WRONG with our kid!!"
I took him in for an evaluation. They have not diagnosed him with an ASD (Autism Spectrum Disorder) but they have diagnosed him with multiple Sensory Integration Disorders (SIDs). Out of the 13 areas they tested, 11 of his came back as "Definitely has a problem with..." and one came back as "Likely has a problem with..."
The only one that came back as normal was his cognitive ability, which we knew.
Here's the part where I tell you I'm a horrible mom.
I haven't been able to find a therapist here to get therapy for his SIDs. The place where we took him to be evaluated is an hour away and I have asked them, his psychologist, his school, his teachers, his school psychologist and everyone else I can think to ask and NONE of them can even suggest the name of a decent OT in the area.
We did get some information on what could help him and I passed that along to the school. Things like putting him near a window because artificial light bothers him, or giving him certain aids so that he can focus or UNfocus (he hyperfocuses on one thing or will focus on nothing or will focus on everything which just overloads him).
His father didn't believe me when I said there was something wrong with our kid. My family didn't believe me. Nobody believed me. I knew in my gut that something wasn't right.
Unfortunately, hearing that there was a problem was more devastating to me than to anyone else. I didn't feel vindicated. I wasn't happy about it. I wasn't relieved to know WHY. I was destroyed. I cried for days. Something really was wrong with my baby.
Most of all, I felt alone because nobody supported me. Nobody believed me.
A little over a year later, we still struggle but it's gotten a bit better.
I startled him just the other day and he was so thrown off that he fell out of his chair. This time, we laughed about it. He runs awkwardly because he doesn't know how to move his body in an appropriate way but I don't mind. He's finally running.
We've worked on his interpersonal abilities and I've talked to him about how I'm awkward sometimes. He laughs now. He hadn't laughed regularly in YEARS - like since he was a toddler.
This past Sunday, I saw him play dodge ball with a bunch of other kids (and a big kid - Glass). He did very well, threw the ball fine, grabbed it, etc. Now, Glass threw the ball at him and he fell down from the way it hit him but I don't think it was due to Kiddo's physical abilities. He was laughing... HARD. He was having a good time.
He rolled down a hill for the first time and he loved it. Grass in his face, all over his body... Maybe it wasn't comfortable to him but he said it was FUN.
Maybe nobody believed me. Maybe they didn't have to believe me. I'm just glad I listened to my gut.
8 comments:
I am so sorry this happened. Your pediatrician also is to blame for not really listening to you. I hope you find an OT for him soon!
Have you checked into local universities and teaching hospitals? They can usually hook you up. As a mother, I know what you mean. We always "just know" when something isn't right... even if its as minor as they are upset. The husband and the kids have asked me how I know, and I say.. I just know.
Good luck to you and much xoxoxo
I'm so sorry nobody believed you and that you are having trouble finding a therapist. My son was 6 when we finally got him diagnosed with Aspergers with sensory issues. I spent years being told there was nothing wrong and that I needed to take parenting classes. Turns out he is lactose intolerant, possibly dairy & casein intolerant; has silent reflux, mild gluten intolerance and sensitive to sulfites.
OT and diet have made a huge difference.
Have you tried your local autism society? They may have a list of doctors for referrals.
Our son does only 1 session a week + twice daily music/listening therapy at home with a cd player and hd headphones. I can tell when he skips it..
Don't be too hard on yourself, we rely on doctors to listen to us when we share our concerns.
Let me know if I can be of any help.
i think sometimes doctors assume if you're young and look normal, then you're healthy, end of story.
at least that's how it's been in my experience.
A very good friend of mine saved her son's life, literally, only because she was tenacious, persistent and listened to her gut. But she got the same reaction from the doctors as well, "Go home, things will be fine." If she had listened to them, she would not have the young man now. She also vowed to do something about it and spent years going to school to become a medical facilities director. I really admire her.
Hey there, as someone who has spent a couple visits with kiddo and myself had a autisitic child who was able through years to climb into a aspergers diagnosis. I must say that Kiddo is great. His ability to blend into the social setting and deal with other children older and younger than him, his decision making and social skills are fantastic. Physically I didn't notice anything out of the " normal akward" I saw this as a form BT for TBI and a mom who lived it 19 years. I am so happy that you listened to your gut, but also that you don't make a big deal out of it, this does not define him, in fact some of the greatest genius in history were classic sterotypical aspergers kids.
And I must say, I expect that from your little genius Kiddo also.
Wow...before you got the the actual "result" - I was reading your descriptions and immediately thought "aspergers." You knew something was up before any "formal" training - which only UNDERSCORES my gut-feeling/try and dispute it bc I'll smack yer ass knowledge that you will be a GREAT intuitive social worker. Have I mentioned that before???? LOL
I have suspected since birth that something wasn't quite right. Like yours, my husband has always said, "Why do you WANT something to be wrong with him?" It's not that I WANTED something to be wrong, it's that something wasn't quite RIGHT and I wanted to know how to help him. Two weeks ago at 26 months old, our son was diagnosed with what I had been suspecting since he was about 12 months old: Sensory Processing Disorder/Sensory Integration Dysfunction. Thankfully he's young enough that the state-mandated Early Intervention program is taking care of getting OT in our home 2-3 times a week.
Go with your gut, Mama. We know what we're talking about when it comes to our babies. *hugs*
Post a Comment