Anybody else out there with a special needs kid?

[kats]

My son has tourette's syndrome. Since he was 5 years old, life has been a constant emotional roller coaster. I have learned great skills from being his mother that will definately come in handy as a nurse. He is now a teenager (15 years old) which just adds more to the mix. We are having a pretty bad week and sometimes it just gets a bit scary when I think of how little time we have between now and his high school graduation. I know some of the problems are due to hormonal inbalances that will stabilize with age, but it is impossible to know how much. I just thought we could maybe share some experiences and ideas of how to cope with things here as we enter nursing school. This applies to parents of kids with ADD, ADHD, autism, or anything else. I hope to hear from you so we can be of support to one another during this challenging time.

[renerian, BSN, RN]

I have five/two bios and three stepkids/custody who rarely see their mom. My bio son was ADD before they knew alot about it and we opted the no med treatment. He was on seizure meds and the two would have been to much. My stepdaughter (19)has mental issues with depressive personality disorder, a panic disorder, social anxiety disorder and an eating disorder. Life with her has been horrible and disruptive. She refuses anymore therapy and now is refusing her meds. WE had to home school her the entire high school years as she refused to go to school-court order to do so or we would be tossed in jail which made no difference to her.I feel for anyone dealing with special needs however that is medically or otherwise defined.

renerian

[sixes]

I am a Mom to 6 wonderful children 3 adopted

I have a 19 year old who is mentally challenged and border autistic

I have a 17 year old who has learning disabilites Dx adhd with odd

I have a 16 year old who is mentally challenged and reads only at a grad 3 level

Life is never boring and always a challenge

Thankfully my jusband is retired so I was able to go back to nursing full time

I am a supervisor in long term care, dealing with the everyday challenges of raising these children has given me more then enough coping skills to work with the residents

daniel is the greatest challenge because you almost have to read his mind

He has an attention span of 2.2 seconds and you can never let him know what is going on the next day

The other day I worked a double and then had to short shift to be back in the morning he over heard hubby saying he needed the car in the am so he woke me up at 2am to tell me all about Tim Hortons in the morning and I never did get back to sleep

Every day is different but if you get into a routine and stick with to your very best the challenges become less and they look forward to certain events on certain days

The biggest challenge we have right at this moment is we are movoing May 1

Our 19 year old keeps packing everything and then unpacking.

Life is like a craker jack box you never know what your prise will be

Have a great day

[sixes]

I am a Mom to 6 wonderful children 3 adopted

I have a 19 year old who is mentally challenged and border autistic

I have a 17 year old who has learning disabilites Dx adhd with odd

I have a 16 year old who is mentally challenged and reads only at a grad 3 level

Life is never boring and always a challenge

Thankfully my jusband is retired so I was able to go back to nursing full time

I am a supervisor in long term care, dealing with the everyday challenges of raising these children has given me more then enough coping skills to work with the residents

daniel is the greatest challenge because you almost have to read his mind

He has an attention span of 2.2 seconds and you can never let him know what is going on the next day

The other day I worked a double and then had to short shift to be back in the morning he over heard hubby saying he needed the car in the am so he woke me up at 2am to tell me all about Tim Hortons in the morning and I never did get back to sleep

Every day is different but if you get into a routine and stick with to your very best the challenges become less and they look forward to certain events on certain days

The biggest challenge we have right at this moment is we are movoing May 1

Our 19 year old keeps packing everything and then unpacking.

Life is like a craker jack box you never know what your prise will be

Have a great day

[NotReady4PrimeTime, RN]

My almost 21 year old son has both physical and mental special needs after having a shot-gun stroke secondary to profound dehydration (medical misadventure) in 1989. He only ambulates with a heavy assist (me holding him up and him moving his feet), he has only gross motor control of his left hand and no control of his right, he has a seizure disorder and a communication disorder, seldom initiating speech. He is sometimes incontinent due to neurogenic bowels and bladder. He is unable to perform his own ADLs but can feed himself. He gets Botox injections in his spastic muscles three times a year and wears braces on both feet and his right hand. Mentally, we've been told, he functions as a two year old. He attends a day program for severely handicapped or medically fragile adults. But his quality of life is great; he is happy and well-adjusted, as are his sisters, both older and healthy. Someday we'll look into group home placement, but not yet. Whatever would I do with my time if he wasn't here?

[Darchild77]

I have a 5 yo who is autistic and has sensory integration disorder. He was diagnosed at age 2. We are still working through the eating issues, and he recieves ST-OT-PT. It's hard knowing that he won't be starting K on time. It seems that things only get harder as he gets older. We are finally now just beginning potty training- Ah, the little things that mean so much!! Can't imagine my life any other way.

[kats]

Thank you all for sharing. It helps to know that there are people out there with similar situations who are still either working towards becoming a nurse or already working as a nurse. Sometimes it is easy to feel pretty alone and wonder about my sanity of choosing a nursing career with my son being who he is. I know it is the only thing I can imagine doing though, so it will just have to work out.

[RedSox33RN]

The hardest part is dealing with all those judgmental people out there saying if only you ______________ she would stop misbehaving. My hearts go out to all of you.

I can certainly relate to that. After our son was dx'd with ADD, I heard from SOOOOOO many people who thought that we were having him dx'd that way because we were "lazy parents who didn't want to help him". If I had a dime for every person I've heard from who doesn't even know my son or his problems, yet can tell me how to "solve" everything, I'd be on the Forbes 100 list. I hate having to explain that no, it was not an easy diagnosis, and in fact took the better part of a school year with testing, observations, and meeting between SPED teachers, his pediatrician, and others to finally come up with this diagnosis. It really irks me how some people read one article in Time or Newsweek about too many kids being diagnosed with ADD/ADHD, and all of a sudden they're experts.

[Loppear, RN]

My 13 yr old son is hearing impaired. 60% loss in left ear, 80% loss in right ear. He was born with a left sided diaphragmatic hernia. Had ECMO for 7 days to help improve lung function. His heart stopped while they were putting him on ECMO and had to be restarted twice. They worked on him for 40 minutes. Very lucky kid.......He was in hopsital for 6 weeks, but came home with no real problems. He is our miracle boy! He has had very few other health problems compared to others that have had ECMO or hernias of this sort. he was 6th baby in Canada to have Jugular vein reattached, it has narrowed considerably since then, but still has blood flow through it, so his body has compensated with some alternate circulation. A few early pneumonias, and a bowel twist, but no other probs since he was 2. His hearing was tested at 6 mths, 18, mths and 2 yrs in follow-up study, and was fine. Sometime around the age of 2/12 yrs, he must have had a silent infection. He was tested at age 3 1/2 and found to have a high tone hearing loss. This seems to be very common among babies who have underwent the ECMO procedure. Not sure why. But to listen to him, you would never know that he is hearing impaired!!! Other than being a bit nasaled and missing some endings of words, his speech is very clear. Those first couple of years hearing must have helped with his speech considerably. He has had hearing aids since he was almost 4, and started kindergarten and got to Grade 3 before he started having any problems in school. We had to fight very hard to get him an FM system and a Teachers Aid through our school division. They told us that he really was doing well, and his grades and IQ were too high to merit any full-time help. Well, we had to hold him back in grade 3, so they finally figured out that his hearing and developmental delays needed to be addressed. Since grade 3, he has had a full-time TA and FM system of his own, not to mention his school has been adding classroom Sound Field Systems as they can afford it. Its wonderful, allowing him to participate in the classroom and with the kids, not just listen to teacher and aid. He does not know sign language and sees no need to learn it now. He says that he does not read lips, but I believe that he does, but doesn't realize it! I will say that we are lucky, of all the things that could have happened to him, this is minor compared to some of the kids we know through the ECMO follow-up program. His health is good, and while it can be frustrating and scary dealing with this, I know my son is probably more frustrated some days than us!!! He is an excellent student and great kid. We are hitting the teen angst and moodiness, but I know I am not alone in that!

On days when I am so frustrated with him I could cry, I just have to remind myself what the alternative could be. I have him here with me, after we came so close to losing him a few times. I thank God for those Nurses and Doctors who went all out for him and us.

[patti101]

My youngest son was Dx with ADHD while in 7th grade. He is now a sophmore in HS. This is a daily challage for him, his school, me, his peers, brothers.......The HS wants him out. He's 16 & they don't want to have to deal with him & his IEP's etc. The resource teachers have made the suggestion that he is 16 & he could legally quit school. I do not beleive that to be an option....yet, I may have to rethink it.

[Achoo!, LPN]

we have a program in WIS that offers help to parents if they are having issues with the schools. They will give free advice, go with you to IEP's, be a knowledgable representative etc.. I don't know if you have one in your state, but this is the website for Wisconsin. It may direct you to someplace that could help..

http://www.wifacets.org/services.htm