parents of kiddos with special needs
pittsblue99
Posts: 277 Member
My youngest son is 5 and has CP. He is 100% dependent on us for every aspect of his daily living. He has a feeding tube, a trach, and is on a ventilator. I have learned so much from him that I even went to nursing school to get my LPN diploma and am now working on my 2 year RN degree. Up until a few years ago, he was very touch and go - there were several times that we were unsure whether or not he would get better if he got sick. I was very athletic from 7th grade on up until I became pregnate with him - I was a high risk pregnancy and was not aloud to do much more then breathe at times. For the past 5 years, my attention has been devoted to him and our other 3 children in every way, shape, and form. My question is this: how do you seperate yourself from being "mom" or "dad" and go back to being "just me" when it comes to working out and getting in shape? I love walking and have recently begun jogging a little as well but even when I am doing that, I worry about what is going on at home. I know that I cannot have my phone attached to my hand 24-7 but I am afraid that somebody will call and I will miss it. I know that as he gets older, he is going to be harde to care for because he will eventually get to the point that we are unable to lift him easily to move him from place to place. I need ways to work my arms and back to be able to keep up with his weight gain now while he is still not too heavy. I need to work my "core" muscles desperately but after having 2 c-sections, I have very little stomach muscle that has not been cut through. I love my little guy and could never imagine a day without him but I need to be here for him when he gets older too. It is so hard to find time sometimes to go for a walk - let alone try to get a gym membership someplace that may or may not ever be used. Sorry for going on and on, I just feel like I needed to vent for a minute. If there is anybody else out there that has a child with a special need, feel free to add me and we can support each other (if you would like).
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You know me already.
I have 3 with special needs including one with CP. Realizing that 2 of them will need my hands on daily care their whole lives is what motivates me to keep doing this.
Glad you posted this...I'd been thinking about it. We special needs mommas should be supporting each other!0 -
Hi, nice to meet you.
I have 4 special needs kids, including a daughter with CP. While her CP is mild, my oldest son has autism and will likely be in our care indefinitely. I need to be healthy, not only so I can live long enough and be strong enough to take care of him, but also in the event that I need to be a organ donor for one of my two other boys.0 -
It is very overwhelming having one that is completely dependent on you every second. My youngest (14) has severe autism and was completely dependent on us for years and years. This past Feb. we made a very hard decision and moved him into residential care (for his safety as he is very self-abusive and waking up to him sitting in a pool of blood because he'd bitten a chunk of skin off his hand was starting to happen more and more, and as much as I tried, I couldn't be awake and watching him 24 hours a day!). Even now, when he is very far away and I can't see him everyday, he is still constantly on my mind and I'm always calling, emailing, etc. to keep up with him. I still wake up at 2:30am thinking I hear him crying. So, I completely understand how hard it is to take time to just worry about yourself for a few minutes!
~~Veronica0 -
Veronica, I can't imagine how hard a decision that was for you to make...but what else could you have done?
It crosses my mind sometimes that as desperate as I am to ALWAYS be the one to care for my CP kiddo (who's also on the spectrum), the day may very well come that that may no longer be what's best for him.
Did anyone else gain a bunch of weight over dx's or is that just me? I gained 50 pounds (nursing twins!!!) in just a few months after hearing about CP and another 25 over Asperger's. Getting closer to losing that 75 pounds feels like reclaiming my life finally.0 -
Velma, it's a real challenge having more than one SN kid. Good for you for taking care of YOU so you can take care of them! That's my ultimate goal as well.0
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Veronica, my heart goes out to you for having to make that decision That is my biggest fear for my son is that we will eventually have to do that one day. @ seven - I gained weight but it is hard to say whether it was from the dx or because we were basically living at the hospital two or three weeks a month for the first 18 months after he was born. 0
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Velma, you have eternally earned my respect - I know how difficult it is having just my little guy with a special need, I cannot imagine three more. Well done taking care of you kiddos and yourself 0
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Veronica...it takes a tremendous amount of strength and heartbreak to make the decision to move your child into someone else's care, but know that you made right one for your family. As you say, you can't possibly be awake and aware every minute of the day. Moving him to a home where he is supervised and safe is one of the biggest acts of love I think a special needs parent can make.
Seven...I gained most of my weight with each diagnosis. I think the worst of it was after my daughter's--all dreams of ballet lessons or gymnastics went out the window. I let myself sink into it. But you know what? My girly is pretty rough and tumble so ballet wouldn't have suited her anyway :-)
Pittsblue...That's such a nice thing to say, thank you! It's certainly been challenging at times and I've often thought that I couldn't take one more day, but we gotta keep moving and stay strong and positive. And I think that getting healthy physically helps keep us strong mentally.0 -
Hey girls, sorry I didn't respond back, but my weekends tend to be crazy (during summer at least, winters are so much nicer as we just hibernate, LOL). Thank you all for your kind words. I'm just starting to get to the place where it feels like placing Stevie was the "right" decision. When we got to go visit him in June, we already saw some positive changes, and he still definitely remembered us, which was my biggest fear that he wouldn't (his house is in Idaho and we're in the middle of Alaska, so we can't see him on a regular basis for now (when he's 18 we can potentially bring him back to Alaska, and counting down already - 3 years 5 months!).
Seven- it seemed like my weight mirrored where we were in Stevie's life. Diagnosis was hard, and brought about some weight gain... I just didn't have any emotional energy left to take care of my diet or exercise. Then, when we got to a "stable" place where he was in school, doing well, I had a big weight loss push and started to get it back together, but when he entered his really bad self-abusive place, it all came back on. That was SO devastating.
Velma- can't imagine having more than one special needs kiddo. My oldest 2 were such a help with Stevie. My oldest (daughter, now 23) actually now works with special needs kiddos as a job while she attends college (she's in super high demand with the most severe kids in our programs here because she's great at balancing patience/compassion while still not letting them get away with bad behavior).
~~Veronica0 -
So far away! That's gotta be hard. A friend of mine is going through that right now...they'll be in the same state, but she's a single mom who'll still have her teen with Downs at home after she places her CP/autistic kiddo, but he'll be far enough away that they won't be able to make the trip often.
So glad Stevie still remembers you. That would be my biggest fear as well.0 -
Yes, it is far, but we are so blessed to be able to visit him 2-3 times a year. It's not tons, but there could be worse situations. There are two other boys from Alaska in Stevie's house, one from a single mom household, and one from a lower income native household, so neither of them get to visit as often as we can (although one is verbal and can talk on the phone a little- I'd love to have that option!).
~~Veronica0 -
That would be a luxury...my guy's nonverbal so far too so I can imagine how wonderful a phone call would be.0
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Veronica--Your daughter sounds like an amazing woman! I really admire those that work with special needs children...it takes a special person to be able to take some of the things that our kids can do, and do it with love and compassion. I will never forget a single one of my oldest son's teachers/aides/ therapists because they are one of the biggest reasons why my son is able to do what he can now. I'm sure the families that your daughter helps feel the same.
Seven--your son is so adorable! Look at that happy face and shining eyes...you can see how amazing he is :-) I know you said that he is nonverbal, does he have other ways of communicating to you? We used the PECS system when my oldest was struggling with speech and it was pretty helpful.0 -
One of his therapists that used to come to the house till he was 3 said she wanted to see him using a system with pictures and buttons (is that what you are talking about?) but his current speech therapists don't think he's ready.
Often I can just tell what he needs, but there are times when it frustrates him that I can't figure it out. Mostly though, he's always the happy kid you see in that pic, thankfully.
Sometimes he signs "more" and we're always exposing him to more signs and hoping he'll catch on. He's gaining more and more use of his (stroke affected) right hand, so hopefully signing will become easier for him as he gains function.0 -
Velma- She is amazing, and I have been very blessed to be her mom!
Seven- That is really encouraging that he is able to at least use one sign! I think that is one of the biggest hurdles Stevie has is that he just doesn't have any really functional communication. We've worked on PECS for years, and he totally gets the idea that he needs to give us a card to get what he wants, the problem lies in trying to get him to figure out that each card has a meaning! It's very frustrating as he's making progress in identifying letters and numbers, and is actually doing very simple addition, but he still has a very hard time with basic communication. Surprisingly, given his diagnosis, is that our biggest issue is getting him to break eye contact long enough to look at the pictures! LOL
~~Veronica0 -
I have 2 special needs kids but one is not a kid anymore, he is 20. It has only been in the last 2-3 years that I have been able to take a breath and leave them for a short time. I have my cell with me all the time. My hubby travels alot so I have been with my boys quite a but but I would not change a thing. I would be lying if I said everything is peachy, we have our days but exercise for me in the last 2-3 years have been a lifesaver for me. If I would have know 20 years ago exercise would help so much I would be a marathon runner!!! LOL My boys do not have CP but I understand about worrying and waiting by the phone, "waiting for the other shoe to drop" but to steal a slogan from AA I live one day at a time. This life is so temporary. 0
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Welcome goodymom!
It's always so good to chat with people that truly get it. 0 -
sevencallmemom: yes, it nice to talk to people that understand. I say, no one knows what it is like in my house b/c they don't live here. So, when people are judgemental I always remember that and I always keep that in mind before I become judgemental!! 0
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That's a valuable skill, especially for a SN mom. So many people think that they know what they'd do in your shoes...example:
Maybe if you'd feed him this or that...yeah sure, I NEVER thought about FEEDING him before! We just got the feeding tube/fundo because I'm too lazy to use a spoon. Who cares about the 13 aspiration pneumonias he had before he was 2 1/2...I'm sure it's just a coincidence and not at all about how he can't swallow and keep his food down (and out of his lungs) effectively.
rawr.
Sorry that's just my vent for the day towards ignorant people.0 -
Hello to all,
I've read all your posts and I am in tears as I am writing this. This is my first time doing anything on-line. Reading your stories makes me feel like I am not alone. I am a stay at home mom and I have two boys with autism. Sometimes i feel so overwhelmed that I don't know how I will manage. But then I take one look at my boys and I know that I have to be strong. It's so nice to know that you are out there....somewhere...
Thank you for sharing your stories...
Linda0 -
(((hugs))) Linda, welcome to the group! So glad we can be here for you. My pastor's wife is raising 2 autistic boys (her grandsons) and I am in awe of how she even gets out of the house.
Such a responsibility!0 -
Hello goodymom and Linda! Glad you found the thread :-)
One of the hardest parts of being a special needs parent, in my opinion, is the feeling of isolation. I don't know about anyone else but once the diagnoses came, a lot of our friends and even some family backed away from us. I don't know if it was fear or if they were uncomfortable witnessing certain things but it was very painful for us to feel so alone.
Seven-- I completely understand your vent. I got a lot of " he just needs a smack" or " what a brat"... what they were really seeing was an autistic child freaking out because he couldn't figure out the world he lived in. Or when people stare when I check my other boys sugars and give them insulin...or when they stare at my daughters AFO's and ask what's wrong with her. It all makes me so angry sometimes.0 -
My Aspie has stimming behaviors that I don't ever even notice anymore (because it's our norm) until we go to church or somewhere and it gets pointed out to me...and not always in a respectful way.
I don't mind people honest,respectful questions most of the time, but there are times when I just want to get in and out of Walmart without having to be an advocate for special needs.
Unfortunately that's where that isolation part comes in.
We never go anywhere but church as a family...like in a year or more now I think. It's just sad. I need to buck up and make myself face it before Seth (cp) gets any bigger and leaving his chair (and the extra attn it brings us) is no longer an option.0 -
My family goes to church and some people don't understand. Both my boys can do odd things. Today my youngest was very talkative and bouncy today when we went to ministry but the people there love him even when he bouncy and very talkative. He wore me out today. I surround myself with people that accept my boys. It takes me a little while to warm up to new people b/c i want my sons to be accepted. What mom doesn't. I can have a tendency to isolate but I beginning to break out more with my sons. We've gone bowling quite a few times. My youngest rarely7 sits still for more than a few seconds and we go first thing in the morning. I figure no one is perfect and my boys are allowed to be out in the world!! :blushing:0
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We used to get a lot of comments about Stevie's behavior when he was younger, and his disability wasn't as obvious to the naked eye. Now that he wears a lot of protective equipment, people just avoid him. Once people get to know him, he wraps them right around his little finger and everyone falls in love with him, but he is very intimidating to new people. When he was younger, we got out and about a lot more, it gets SO much harder as they get older. I'll share a picture of my sweet boy that we took on our last visit to Idaho, with hubby and myself, so you'll understand what I'm talking about LOL.
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@ everybody, I am sorry I have not been posting on here much, busy time in our house trying to get everybody back to school (including myself) soon.
Vallejos6 - that picture is beautiful! Is that I pillow pet, I see lol? My son got one for Easter this year and loves it! The fuzzy material that the pillow is made out of is wonderful, he has a blanket that is made of the same fabric.
We have been very fortunate that we do not have behavior issues to address with our little guy, but he is still young. He has a temper that is starting to show more now that he is 5, but he certainly does not have outbursts or violent behavior that we have to contend with.
Being isolated is a huge feeling that we experience - even within our family. We are not able to jsut pack up and go to family get togethers because it takes almost our entire van just to transport everything that we need for Michael. By the time we have his chair, back up ventilator, suction pump, feeding pump and bag, batteries for the ventilator, and diaper bag/backpack, there is little room left for us in the van. It was much easier to get out and around when he was younger (mainly because he was so tiny) but now it is not so easy to do.0 -
Pitts, thanks, yes that IS a pillow pet. We are trying to find something other than his big bed pillow he'll carry around, he's still not convinced, LOL. He is very oral, and loves to have something to chew on at all times, which has usually been his pillow. The house is working with him on some chewlry (basically stretchy necklaces/bracelets that he can chew on). He LOVES the coil shaped ones to chew, but he can't really get them into his mouth by himself because he usually has these stiff band things over his hands (you can see it in the picture, that blue thing sticking out behind the pillow pet-they are on loose and he can take them off by himself, but he prefers the security of having them on- he knows when they come off he can bite and hurt himself, but it's like he doesn't understand that he can just choose not to hurt himself, so frustrating to us, I can only imagine how crazy it makes him!).
I have to say that I am always grateful that we don't have to deal with all the medical equipment like you do! Stevie's a healthy boy and I'm very happy that he is, although a lack of behavior would be great too, LOL. Hope you all have a good back to school! I'm going back next week as well (I'm a special ed aide to a little boy with severe visual impairments, so I'll be in 3rd grade this year, woo hoo! Doing PE and recess should help a little to get the last of this weight off (hopefully!!)
~~Veronica0 -
So my little guy that has CP currently gets Botox injections in his toe flexors, heal cords, hamstrings, and glutes (butt). I know that eventually we will reach a point that Botox does not cut it anymore, then we have to look into a Baclofen pump. He gets oral Baclofen right now but we are really hesitent to get the pump. We are really hoping that it does not come to the pump, but we want to be prepaired if the time comes. Does anybody have experience with the Baclofen pumps? Is it a good idea to do or do you wish that you had not done it? I have seen pictures of the pumps and they look huge!! We are really afraid that he will loose what little bit of rolling ability that he has if he were to have a pump because they sitck out so far. I have also read that there are lots of problems with the catheter leaking or moving out of place after it is put in. We are already afraid to be away from him for too long and just at the thought of him having the pump, my hubby and I pretty much decided that one of us would almost always have to be with him all the time because there are little things that he does that only we catch that nobody else would. Any thoughts or input would be great, thanks 0
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Veronica...it takes a tremendous amount of strength and heartbreak to make the decision to move your child into someone else's care, but know that you made right one for your family. As you say, you can't possibly be awake and aware every minute of the day. Moving him to a home where he is supervised and safe is one of the biggest acts of love I think a special needs parent can make.
Seven...I gained most of my weight with each diagnosis. I think the worst of it was after my daughter's--all dreams of ballet lessons or gymnastics went out the window. I let myself sink into it. But you know what? My girly is pretty rough and tumble so ballet wouldn't have suited her anyway :-)
Pittsblue...That's such a nice thing to say, thank you! It's certainly been challenging at times and I've often thought that I couldn't take one more day, but we gotta keep moving and stay strong and positive. And I think that getting healthy physically helps keep us strong mentally.
I also gained weight when my son was diagnosed with Apraxia. I kept gaining some as it was very stressful. But now that he is starting to do so much better I don't feel the need to eat the way I had been. I was always super fit too. I feel bad that I have gained weight but I know that it was because of what was going on in my life.0 -
I have a son with mental special needs only... are we welcome here too?0
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