parents of kiddos with special needs

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  • sevencallmemom
    sevencallmemom Posts: 505 Member
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    (((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!
  • VelmaD76
    VelmaD76 Posts: 9 Member
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    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.
  • sevencallmemom
    sevencallmemom Posts: 505 Member
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    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.
  • 1goodymom67
    1goodymom67 Posts: 125
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    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:
  • vallejos6
    vallejos6 Posts: 146 Member
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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.

    Chillingonthebed.jpg
  • pittsblue99
    pittsblue99 Posts: 277 Member
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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.
  • vallejos6
    vallejos6 Posts: 146 Member
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    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!!)

    ~~Veronica
  • pittsblue99
    pittsblue99 Posts: 277 Member
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    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 :)
  • mikajoanow
    mikajoanow Posts: 584 Member
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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.
  • Diary_Queen
    Diary_Queen Posts: 1,314 Member
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    I have a son with mental special needs only... are we welcome here too?

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