Counseling for parents

[jan zagone]

Hi everyone, I am new to this forum but not new to sb. I am the mother of a 15 yr old boy with sb level L-3,L-4. He is mobile and walks with loftstran crutches, attends high school reg. classes but has been home for 3 weeks with a stage 3 pressure sore which is healing. It was a true nightmare. He is healing well now but I find I am emotionally grieving losses in his life, i.e his friends are going on missions trips, ski trips, driving etc. I am seeing more of the limitations he faces. Does anyone know of counseling available to parents of kids with disabilities in the Martyland/DC area?
Thanks,
Jan

[LisaJoy]

Welcome to the site! Our site owner, Barb, has been going through this with her son who's a little younger than yours.

I don't know the answer to your question, but you might try contacting the Kennedy Krieger Center in Baltimore.

[miss piggy]

I know where u are coming from, our son is 2 in april, and it is like grieving, i dont know how i am going to be when he gets to the stage your son is at....i went to a playgroup today with reuben, and i was literally sitiing with tears in my eyes as all the other children were all running around in a big circle during song time singing and reu was sitting by his loan some playing with a toy kitchen making tea!

its hard as physically you see peers overtaking..hope you find the support you are needing

emma x

[sean]

Gee this must be tough on parents. All I've got is, I was one of those kids, now 50+ no kids.
I think it must be harder on the parents at times. It wasn't until my late 20's that I realised all I had ?missed out on....sport comes to mind, and with that the team spirit, competition, socialising.
Now I know I missed out on nothing important, better off in many cases, and nothing I havn't been able to chatch up on (by choice) as an adult.

I was the one off to the side (very likely playing with a toy kitchen lol). I was there! not alone!
My view now is "blessed" to have had that freedom to explore my imagination, my individuallity.
I guess you have expectations of your kids being as all physical/social as they can.
I think your kids are there! not alone, observing and absorbing, they don't switch off if they can't join in.
Now I'm a deep thinker, aware, empathetic, as competetive/physical/social (I could go on and on) as I want to be, free from the expectations of parents, society and peers.

These limitations? build character.

Be strong, and don't be sharing "your" grief with your kids, they are somewhat oblivious.

Sean.:happy065:

[dahliafaolan]

I know what you mean Sean. As a child, I was often on the sidelines when they were playing more physical games. But I don't remember often being upset about it. Often, I was happy to be on the sidelines because that meant I could play in my imagination or read a book. Till this day, I would much rather be on my own, lost in my own imagination or lost in a book.

I'm like you, Sean. I consider myself "blessed" to have always been on the sidelines. By being on the sidelines, it gave me more times to explore portions of my imagination that have allowed me to become a decent writer today. Also kept me out of a lot of trouble by being on the sidelines.

[sean]

Thanks Dahlia, Yes I can't remember being upset about not being able to join in, and in secondary school it was a huge relief not having to join the heard, always found better things to do. It's a SB gift.

[LisaJoy]

I was always dead last to be picked for dodge ball, kickball, etc.--understandable. But oddly enough, I was also usually last picked for teams for spelling and math games in class -- even though I was always by far the best in the class (in 8th grade, I was the city-wide spelling champion).

[n3rdchik]

Did you have sibilings Sean, Dahlia?

I am finding it hard to drag Sagan to his brother's soccer matches - it seems cruel. Right now, when his limitations aren't all that obvious, I get comments about "you blink and he'll be on the field" Until he was born, I would make Anson and Kepler attend each others matches.

I fully expect that *whatever* Sagan does - sport, music, spelling bees - his brothers will be there.

[Summer25]

I absolutely loved going to my brother's soccer games. I do use a wheelchair though, so I don't know if that makes it different. My brother is a lot older then me as well. So, as a 5 year old child he was 16-17. It didn't matter to me that I couldn't play. I found other things to do while there. A bunch of the guys had sisters my age or older sisters that would watch me and play different games. My brother traveled a lot with soccer and to me that was the best thing in the world. I had more big brothers then I could count...lol. At the age of 27, I still have contact with most of the guys my brother played with, even if he doesn't talk to them now...lol. So, I wouldn't worry about that at all. He will find something he likes to do and he wil be just fine.

[janjanwhit]

It has taken me the full two years of Fergus's life to accept that he has sb.One day I woke up and was not sad for him anymore, it was very weird. I found having a baby with sb very very traumatic. Fergus on the other hand is very happy and has no idea that he has sb. i think it may be worse emotionally to be a parent of a child with sb than have sb yourself. to be honest i will never know.

[angel]

Hi, I have been away for a few weeks but i am trying to get back into the swing of things.
I have to weigh in on this one cause again I have been on both sides of the fence. As the child with SB I did my own thing. When my brother and sister went to their gymnastics class i had to be there. I found my own trick i taught myself how to walk on my hands (which i am proud to say i can still do today at 34) All the other kids thought it was cool but by the time my brother and sister stopped taking gymnastics i was still the best at walking on my hands! I don't remember ever feeling like i had been shortchanged. For example, i would have been a dancer if i had my way and circumstances had been different in my life. I have way to much boogie in my butt to not be able to use it. Well truly i do, these crutches never stopped me from getting on a dance floor and dancing just as badly as those who were dancing around me lol. When i am in my car alone i turn into a total DIVA!!
What i am trying to get at is there are things all of us want to do that we may not get to do. Our reason may be the SB, some other girls may want to be models and can't be because they are to short. Some kid may want to play football but just doesn't get the chance for whatever reason. As far as driving I can drive, most people with SB that i know can drive so that is something that most likely can be achieved. Truly that ment more to me than anything. It ment my freedom to go and come as i pleased to me that ment everything!

Now on the parent side of it. My son has SBO so yeah i am the parent too. As i have said a million times THE PARENTS SUFFER THE MOST!!! There is no doubt about it. I didn't know what suffering was until i became a parent and had to go through this with my kid. The thing that didn't make sense to me is I know that having SB is not that bad for the most part, I know what it is to have those tests, see those doctors etc... That didn't matter at all! I still went through so many emotions with my son. Not over the things he can't do because i really don't know what those are yet. I will let him try anything (with the exception of football or wrestling) i don't know what he can do until he tries. But just because it comes with the territory. As a parent your there to make it all better, to protect and give and make all the bad go away. You are powerless in this and that is the most horrible feeling i have ever had in my life. I can't make it go away, i can't protect him from any of this, i can't kiss this away! He is going to have to go through this weather i like it or not. The only think i have figured out for myself as far as being his parent, i have to suck it up and make sure I don't put my fears and heartache onto him. It is not his to carry. He will get plenty of that when he has his own kids. Right now i want him to be blissfully unaware that he may have limitations because i don't want him to be afraid to try everything in life.
Last point when my son was about 6 months old (he is 14 years old now) i told my momma i had NO IDEA what she went through until I had him. I had no idea it was so much worse for her than it was for me. She looked at me like i was crazy because she always felt bad that she couldn't feel my pain, she couldn't honestly relate so she had to do the best she could with the limited knowledge and really gussing how i was really feeling. I assured her and I assure you that you will suffer way worse than your children will. I guarantee it because when something hurts you that is one thing, when something hurts your kid it is a whole other ball game.
Just wanted to offer a different perspective.

Angel

[sean]

n3rdchik. I am the youngest of eight.

[dahliafaolan]

Did you have sibilings Sean, Dahlia?

I am finding it hard to drag Sagan to his brother's soccer matches - it seems cruel. Right now, when his limitations aren't all that obvious, I get comments about "you blink and he'll be on the field" Until he was born, I would make Anson and Kepler attend each others matches.

I fully expect that *whatever* Sagan does - sport, music, spelling bees - his brothers will be there.
Biologically, I'm an only child. But growing up, I had so many cousins and friends of the family that it was like having tons of siblings. I still have a "brother" and a "sister" that I see on a regular basis.

[n3rdchik]

Thank you, Angel, Sean and Dahlia!

Angel, you hit the nail on the head - I want to make it better. I want him to have the same experiences his brothers. I have to come to terms that he won't - but it will be as much as the 6-9 year difference as the SB.