Facing Facts About Your Special-Needs Child

Dustin - My sweetie! :D
By Leca
@lecanis (16739)
Murfreesboro, Tennessee
February 8, 2010 12:47pm CST
Last night I had a rather frustrating telephone conversation with my son's father. We're no longer together, but I'm trying to keep him involved with our son's life, and he loves Dustin very much and wants to continue to be able to be close to him. The problem that we were having last night is that I was trying to update D's father on his most current health situation and the new information that the doctors at Vanderbilt Children's Hospital had given us. Among this current information is the importance of considering and preparing for the possibility that Dustin will never be able to live independently, will always need care, and may even never develop past his current mental/emotional age. Of course, this is upsetting to any parent. I don't blame my ex for not wanting to think about it and not being happy with the possibility. Obviously most parents want their children to do well for themselves and lead happy lives. But it's important to face reality, as well, and it's something we're both struggling with. Have you or someone you know ever had to deal with this sort of situation? How was it dealt with? And did the parents feel strain when one took it better than the other?
2 people like this
8 responses
• United States
8 Feb 10
First off what a beautiful little boy you have. He will go far in life as long as you get him involved in the right programs. My cousin is a special needs person and has achived much more than anyone ever thought he could. There are special schools that are designed for the mentally challanged that teach them the thing they will need to know for independent living. Page, my cousin, now lives in a group home with others that share his same needs, he is involved in a group called Connections that teach them simple task such as counting nuts and bolts for packaged items, and he expresses himself as to how he is feeling in a way that everyone can understand. Also, Page is still very active in Special Olympics, which is the absolute best group in the world. He is always so proud of himself when he does well and accepts defeat with the attitude of "I didn't get it this time but I will next time." He and Dustin are true winners. This situation may be very difficult for his father to handle, I know that it caused the breakup of my aunt and uncle's marriage. But my aunt handled it with true grace, as you must do. Accept those things that you can not change but always work for a better tomorrow.
1 person likes this
@lecanis (16739)
• Murfreesboro, Tennessee
8 Feb 10
Thank you for sharing the story of your cousin! How inspiring! Of course I am working toward a better future for my son than predicted; he is going to the developmental center at Vanderbilt in March for help making a plan for his education, plus we are going to have a meeting with the local school system, and hopefully get him speech therapy. At home, I work with him on things already, but it get very frustrating because his epilepsy causes him to 'forget' things when he has a seizure, and have to start all over learning them. Thanks for your input! :D
• United States
8 Feb 10
The one good thing in this is that some epilepsy is out grown. I know a woman in our community that had epilepsy as a child and went through the same thing your son goes through and then in her teens she out grew it. Of course at that time she was too old to grasp some of the concepts that would of been learned in elementary school but lives a relatively independent life other than needing someone to drive her around. Hopefully your son can have the same outcome.
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@lecanis (16739)
• Murfreesboro, Tennessee
8 Feb 10
I hope so! The doctors have said that it is less likely because he has more than one type of seizure, but there is always hope! According to the doctors, however, the seizures may still leave behind permanent brain damage that won't resolve when they do. Hence saying that it's likely he will never be independent. Of course, they can't know for sure though, and I do hope for him that his seizures will go away and he'll be fine! :D
@Thoroughrob (11771)
• United States
8 Feb 10
Been there and done that. My husband is one that does not want to talk about things. They are as they are and we cannot change them are his words. It is heartbreaking to know that your son may not be able to live independently. Although they can tell you that, but you can still work towards it. You have to be realistic and not dwell on things. You want to help him make his life as good as possible and as independent as possible. My son is 15. He will probably always be here with me, but I will make him as independent as I can. You have to really concentrate on the strides he is making and not what people are telling you he will never do, or you will go crazy. If you need to talk, I will listen. I really do know where you are coming from.
1 person likes this
@lecanis (16739)
• Murfreesboro, Tennessee
8 Feb 10
It sounds like a lot of men have this issue! Thank you so much for your advice and your offer. Right now things are still sort of crazy for me with getting used to being a single mom, as well as dealing with Dustin's problems. He's been catching every little illness going around, and when he gets sick, his epilepsy gets worse and worse. I do try to focus on the strides he is making, but it's rather difficult when it is one step forward, two steps back. Every time he has a major seizure, he loses almost everything he's learned, so basically I've taught him how to do the same things multiple times now. Right now, I get excited every time he manages to say 'mama' or ask for something he wants.
@Thoroughrob (11771)
• United States
8 Feb 10
I do think that may be the way they deal with things. I have learned to take one day at a time, and only focus on that one day, just to be able to survive. The one thing that I can tell you is that these children will show you unconditional love. A love that most people will never experience. Try to keep your spirits up and treasure every minute. He will grow up faster than you think.
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@lecanis (16739)
• Murfreesboro, Tennessee
8 Feb 10
That is very true! He is an extremely loving child, both toward me and everyone he meets! I've had a lot of people on first meeting him respond to how sweet he is, and it's amazing watching people who 'don't like kids' or are generally not friendly just open right up for him.
@maximax8 (27048)
8 Feb 10
I have a son called Leo. He has got spina bifida and hydrocephalus. He has a shunt in his head. He needs leg exercises every day. He must have catheter care day and night. I feel tired a lot of the time from all the caring I have to do. He goes to a play group for disabled children and those with special needs. So far in his life he has had two operations. I take him to appointments very often indeed. He has the highest level of disability for care and after age three I imagine he will have the highest level of mobility problems. I am pleased to say he has a blue badge for my car. It lets me park in disabled parking spaces. His dad doesn't live with us. He doesn't understand how challenging it is for my son and I. He wouldn't be able to remember the long list of professionals that we see on a regular basis. At the end of January Leo had a bladder and kidney scan. I was told there is a small problem. So far the only thing he hasn't got a problem with is his eye sight. I know many of the other parents that have children that go to the play group for disabled children. One lady was in tears saying her husband won't listen to anything she says about their son. They have twins: a normal girl and a disabled son. Another lady told her that her husband was always moaning about her being busy. She was taking their daughter to medical appointments. He took one week off work and did all she had to whilst that lady went to visit her sister. Her husband began to take notice about their daughter's problems. Many couples with a disabled child split up. Lots of men find it impossible to face the situation of the special needs child. Good luck with Dustin.
1 person likes this
@lecanis (16739)
• Murfreesboro, Tennessee
8 Feb 10
Thank you so much for sharing with me! It must be tiring indeed to care for him, with those sorts of issues. I understand that -- I get exhausted taking care of Dusty, especially on those days when he has seizures every few minutes. I think it's great that you are able to go to a play group for disabled children! Once I have transportation, hopefully I can find something similar in my area.
@deedee328 (1127)
• United States
9 Feb 10
I have a five year old great nephew that has Cornelia de Lang Syndrome (I hope I spelled that right). He was born with no hands. His arms stop just below the elbow. He is fed through a tube. He cannot walk. He is forever having kidney infections on top of other health problems. I tell you all of this to let you know that no matter how bad it seems, no situation is hopeless. He plays. He scoots around on his rump. He uses his legs to get leverage to sit himself up. He goes to a school for special needs children. My heart breaks for the many marriages that end because one parent can't handle things. I understand that it is very difficult to care for a special needs child, but I dont understand how some people can walk away from their children. For those parents that chose to stick it out, I commend you. I admire your strength and courage. I have great respect for you all.
1 person likes this
@maximax8 (27048)
10 Feb 10
I hope that once you get transportation you will be able to go along with Dusty to a disabled children's group. I know what you mean about it being stressful and tiring looking after a special needs child. It is rewarding to care for someone that is disabled. Take care.
1 person likes this
• United States
10 Feb 10
Man, Lecanis you sure have been put though life's tests. Yet I still hear and read optimism and hope. I have always admired your strength, courage and survival skills. So what I do know is that Dustin will inherit and learn this from you. How can he not? I would love to get caught up with you. If you would like a call PM me. I know I would enjoy it. I have unlimited long distance so that would not be a problem for me. Men are not made out of the same fiber as women. However that is no excuse. Perhaps in time your child father will come around and be able to handle things better and be more support for you. I am sorry to hear of your seperation, but as other posters have pointed out it is typical. Maddening but typical. I have always been very fond of you, and I think you are an incredible person. With a mother such as you are Dustin indeed has a bright future. The two of you can not fail Last we talked his doctors were still thinking his seizures were ferible in nature. We have much to talk about.
1 person likes this
• United States
10 Feb 10
I don't have children and never will so I can never know what you are going through but I had to pop in and say I'm so sorry and I wish there was something I could do. But at least you Have a son. There are many , not me mind you, that want a child and never have one.
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@658294 (35)
• United States
9 Feb 10
Children are a gift from God like most gifts you get some you are happy with and some you are not so happy with but you gladly accept all gifts because you do not want to upset the giver then their is one special gift that is all important that your use of that gift will determine your special place in the heart of the giver for all of eternity and that is your child and that is your gift to the world.
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@deedee328 (1127)
• United States
9 Feb 10
I have a son, who was just born "sickly". At the age of six he was diagnosed with Petit Mall seizures. I was told not to expect too much from him. There was a chance that he would outgrow the seizures, but that it was slim and I should not get my hopes up to high. He will be 14 in a few months. He has outgrown the seizures. His intelligence level is pretty much on track with that of his peers. He has a speech impediment. I went through the same thing you are with his dad. For some reason, fathers do not want to admit that their sons are anything less than perfect. I would have given my own soul to have had my child be perfectly "normal" and healthy, but I accepted him for the way he was. Yes, I felt very strained while having to deal with my son's disabilities (he is also asthmatic and ADD). I didn't get a lot of imput from his dad. I took on full responsibility for doctor's visits and medications,school and everything. Of course, in all honesty, as much as I would have liked to have some help, I would have been making the final decisions anyway. I will always believe that there is nothing more certain than a mother's intuition. I decided the best way to deal with it was to simply pray and then take it minute by minute. Don't get all hung up on the negative prognosis the doctors give you. They are merely human and they do make mistakes. Only God knows what will happen. Concentrate on your son's strong points. Do the best you can to improve the weak ones. It is a lot of work and worry, but it is all worth it when you see him succeed at something you didn't think he ever would.
@raydene (9875)
• United States
8 Feb 10
Honey life has a way of dealing us out overwhelming challenges...some of us take it one step at a time and hold our breath to keep from screaming while others are so busy kicking and screaming that something isn't going to happen that they waste the quailty time they have.... Many look back with regrets while others are blessed to a contented sense of having done their best. I'm so sorry for your child and I will pray that the docs are wrong!!! Keep hope alive Sweets because miracles do happen. Great big hug hugs to you..can you feel the warmth? xoxooxoxoxoxo
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