First let me start by saying thank you. Thank you for creating a place where parents raising special needs children may come together. I honestly do not believe parents of "normal" children quite understand this journey we are on.
My name is Theresa and I am 38 years old. I have been married to my wonderful husband, Michael, for 20 years now. We laugh looking back as in our young naivety we both wanted six children and for me to be a stay at home mom. Oh boy was God listening a tad bit to much!
We have two biological daughters. "S" is 18 and blossoming into a beautiful and strong woman. She will graduate this year and holds down a full time job. On her one night off a week, she watches the babies so I can get out of the house for a few hours. Albeit they are asleep! "N" is 17 and this weekend will be enlisting into the National Guard. She lives on her own, works and attends high school and still keeping a 3.8 GPA. It has took her father and I a little while to understand her choice of life partners but hey we have to grow too!
Our lives changed when we received a phone call on Valentines Day of 2006. My husbands 15 month old godson was in the hospital after ingesting his parents stash of methamphetamines. I spent most of the night rocking him and crying. We decided then and there that "P" and his little sister "K" (two months old) would be coming to live with us. DFPS took custody of the babies the next day and on May 17 2006 they came to us. On March 7, 2007 we were granted Permanent Managing Conservatorship. Loosely means we have all rights to the children except for being able to adopt them.
"K" is now a 3 year old terror! Daddy has spoiled her rotten! So far she has been diagnosed with FAE and Developmental Delay. She also has Sensory Integration Disorder. Which all means she is usually the happiest little girl you would want. She has very limited speech ( the same as if she were 1). She also has a very high tolerance to pain, hot and cold. Example : Big brother pushes her into window sill. All I hear is a small cry so go to investigate. Blood everywhere and no two front teeth. The were pushed up into her gums. Now she will not have those teeth till the big ones grow in.
"P" has more diagnosis then letters in his name. To date we have : Periventricular Leukomalacia (PVL), Cerebral Palsy (CP), Cortical Visual Impairment (CVI), motor and vocal tics, Seizure disorder, Early onset Bipolar, Antisocial Behavior Disorder and waiting on the positive dx for schizophrenia. And what is this caused from? Yep you guessed it. Bio mom's drug use during pregnancy. What all this means is I have a very brain damaged and dysfunctional son. He currently can not go to school and we are looking into a teacher coming to the home. He no longer dresses himself or goes potty. He chokes continually and his speech is decreasing. He has to be supervised 24/7. If I go potty, he goes. If I do laundry, so does he. He has tried strangling his sister 4 times, self injures ie : black eyes, bruises, cutting himself with anything including his fingernails, bites till he bleeds, picks until he bleeds.
I guess the worst part is when every doctor he has looks at you and says they do not know what to do. That hurts because I need someone to help. I know they are with the different meds and our wonderful neuro has given me "carte blanche" when it comes to increasing dosages. I increase then call in to get script changed.
Sorry this was so long but trust me this doesn't even cover a part of our lives. I look forward to getting to know everyone here!
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9 comments:
Welcome! Isn't it great to have this wonderful place to talk to others that are on the same journey. Although I don't have experience with some of what you are going through, I do understand some of it. My little Josh was diagnosed recently with SID too, and has some other problems as well. Maybe we can pick each other's brains at some point on that one. I also have a 6 year old with autism, so I can understand the whole lack of communication problem that comes with speech delayed children. The kids are so lucky to have parents like you that truly care. It doesn't matter how these special kids come to us, they all need the love of someone. I hope you find the help you are looking for here. I have truly been blessed in the short time I have been involved with Thru the Tulips. Once again, welcome and if you need anything, you can leave a commment or even email me!
Thank you for your warm welcome! And yes picking brains sounds interesting.
Welcome Theresa! It sounds like you definately have your hands full, and I am so happy that your oldest daughter is willing to help out a little bit to give you some time to yourself. I've got a lot to learn about some of the diagnoses that you mentioned. Some of them I have heard of, and some of them I haven't. I hope there is something that I can say or do here on this site that will prove to be helpful to you......but I'm coming up blank right now. I can tell that there is a lot you can teach me, though!
I'm glad you are here, and I can't wait to get to know you better!
I am glad you are here! This is a great place to vent and ask questions to people who truly understand that it is different and it is hard.
We are struggling with very delayed speech also, so maybe we can be of use to one another!
I look forward to sharing ideas and learning more about you!
Welcome. Wow, I agree with Happy I'm going to have to read up on some of those diagnosis. I'm sure you're a wonderful mom to these special ones. Welcome welcome.
All I can say is, wow. That is a lot to deal with. I have a 4 yr old who the doctor thinks has ADHD and autism but not sure. He definitely has sensory problems too so I understand that one. I'm always trying to think of new and creative ways to distract him into actually eating. Oh, and he JUMPS constantly and runs and then jumps some more. He's a mover and a shaker, that's for sure. I also have a 10 yr old son with ADHD and Anxiety.
I'm glad you found the Tulips blog. It's a great place.
Good Luck hon! Life can be hard but with friends to talk to you can make it. I hope this group can be that for you. I am so impressed with you. Hooray for sincerely good people who step up to the plate when they are needed. I think that it is easy for a person to say that they would take care of someone else's children but to actually do it without hesitation, even knowing that there could be medical problems...wow. We are lucky to get to know you.
Sounds like you are kept very busy and it can be so frustrating. I can tell you love both children and it hurts when we can't find al the answers we need. My kiddso are the way they are too because of choices their birth parents made. It is so sad.
Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Chair For Cerebral Palsy Child
Keep Posting:)
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