So you’ve read my new post about how and why I’m jumping back into the blog world so now let’s go through what I’m dealing with day to day starting with my oldest just so you can get a mental picture of what life is like a little.
Sassy Pants - Sassy Pants is now 11 years old. WOW! I can’t believe 11 years have gone by since I first saw her beautiful face and was blessed with just knowing her. She truly is a magnificent person. Sassy Pants has ADD/ADHD and had a VPD (Vision Processing Disorder) which after 2 years of Vision Therapy is finally under control. She also has Sensory Processing Disorder which pertains mainly to touch. But she is by far my easiest child.
Little Man – Little Man is now 7 years old. Again WOW! How time flies!!! It seems like just yesterday I was busy bragging about how he was the best baby in the world – always happy, smiling and just being adorable. Now? Well now he is a big boy and keeps me on my toes 24/7. Attitude, drama, back talk…clearly he was saving all of this when he was a baby. lol Little Man was born with Duarte Galactosemia and thankfully after a full year of special diets, tests that seemed to never end and loads of prayers he outgrew it.
As a baby/toddler he was very sick and the doctors couldn’t figure out what was wrong. He was losing weight, wasn’t growing, had chronic diarrhea, and at one point near the end of all of this lost 4 pounds in 2 days when he was about 16 months old. It seemed for a while like we should just pack our bags and move in to the hospital for good but after a long while we went to a new specialist and found out that he was born without the sucrase enzyme in his GI track and needed a life long special diet of very limited sugar, high fructose corn syrup, fruit and juice. After about 3 years on this diet, which in the beginning was very strict, we finally got him to the point where we can let him cheat and have a cookie or cupcake every now and then as long as we closely monitor his movements.
While going through all of the tests to find out what was wrong with him we also discovered that the poor kid is allergic to almost everything – pork, fish, chicken, fruit, sugar, high fructose corn syrup, eggs, milk products, grass, certain trees, dust….the list goes on and on. So as you can see his diet is still limited and pretty strict.
Little Man has had 8 surgeries all before the age of 4. Six eye surgeries for clogged tear ducts, tubes in his ears, tonsils removed and adnoids removed. Now we’re having to take him back into see his eye doctor next week to find out if he has to have yet another eye surgery. (I’ll save the details for another post) I know it’s not like a heart surgery or something but if your child has gone through any type of surgery you know it’s scary. I am dreading this appointment. The surgery before last they had to break his nose so they could tie the tube from his tear duct down into his nose to keep it positioned correctly. OMG I felt terrible for him!!!
Little Man also has Sensory Processing Disorder mainly pertaining to hearing and touch.
Miss Priss – Then we have good ol’ Miss Priss…she’s my toughest child. From day 1 we knew there was something different about her but we couldn’t quite put our finger on it. She did nothing but cry as a baby and I’m not talking crying like a typical baby when she was hungry, tired or dirty or even colicky for that matter. No, she just cried and screamed all day and all night long. If she wasn’t sleeping (which wasn’t very often) then she was wailing. When she was about 6 months old sitting in one of those little bumpy seats we noticed that if she was sitting up next to something to help prop her up she would just sit there and bang her head over and over again. She didn’t make good eye contact and honestly we just couldn’t get her to be happy. She about killed me emotionally. I felt like the worst mom ever because I couldn’t figure out what my baby needed or wanted.
When she was about 18 months old and had only been walking about two months I turned around to answer the phone and she walked over to my freshly poured coffee and went to take a drink but missed her mouth and it went all down the front of her. She had no clothes on and I could immediately see that her skin was starting to turn red. As I rushed over to her I was amazed that even though she was turning red and was clearly burned a bit that she had no reaction. No tears or pain – only frustration that she missed her mouth and didn’t get that drink. What in the world??!??! How did this not hurt her? Why didn’t she feel it? What is wrong with my baby???? These were all the thoughts running through my head. After speaking with our Parents As Teachers professional she suggested that maybe Miss Priss didn’t feel it because she had what is known as Sensory Processing Disorder.
Sensory Processing Disorder, or SPD, is a condition where your senses are either over active or under active. Turns out that Miss Priss’ senses were extremely under active which explained not only why she didn’t feel the hot coffee down her chest and belly but also why she cried and screamed so much as a baby. Everything was starting to make sense. She cried all of the time because she didn’t feel us holding her. Sure, she saw us, could hear our voices and gaze into our eyes but she was not getting the physical connection that every baby longs for. The feel of a mothers arms, a tender hug, a sweet kiss, a gentle massage….nothing. She didn’t feel any of it.
Finally when she was almost 3 we took her in and got her evaluated. I was almost 100% sure they were going to diagnose her with autism but I was VERY surprised when they came back in and told me that she was speaking in FULL sentences!!!! FULL SENTENCES???!!? WHAT??? How in the world did my little one going from barely able to say ‘Mama cookie’ to full sentences??? Yea, she didn’t. They were so completely full of shit. I asked numerous times if they were talking about MY child and they assured me they had the right room/mom. Yeah, I don’t think so. They gave a diagnosis of sever SPD with autistic tendencies. We left there that day even more confused than when we got there. And ten times more frustrated.
So after all of that I gave up. Yes, terrible I know. I just didn’t know what else to do, this was my first time being introduced to any of this kind of stuff and the place we went to was highly recommended. I will never go back there though. For them to tell me that she said, ‘I want that other toy.’ when she literally could barely get ‘mama cookie’ out of her sweet mouth severely ticked me off enough for me to (then) throw my hands up and say ‘well I guess they know best…they are the professionals’.
NOT.
We are in the process of getting her into a new evaluation…I’ll post more about this later.
The hardest thing with Miss Priss is that she has so many different personalities (no, I don’t mean it like a diagnosis of multiple personality disorder or anything like that) that I never know which one I’m going to wake up to each morning. Her sensory system is either really good or insanely off, so she will either be super good, moody, completely ticked the entire day or a million different places in between. Between the still constant crying, whining, temper tantrums, moodiness and everything else I’m completely worn out by the end of the day. All I want is for my little girl to be happy. All of the time. There’s only so much a mom can take, ya know?
My biggest concern right now is that she isn’t ready for Kindergarten and unless she has a diagnosis (educational and medical) we can’t hold her back without losing all of her therapies which are developmental, occupational, physical and speech and language therapies. This is why we are going back to get re-evaluated. So hopefully I’ll have some more info about that within the next month or two.
Well there it is, in a nut shell. I have so much to talk about and get off my chest. So much to fill you all in on what’s been going on the past two years. I hope you will all stick around for more. Go ahead and subscribe to my posts by clicking here so you won’t miss a beat. Believe me….I need the support and I’d love to help other moms out that are going through similar issues at the same time.
Until next time…
