Anybody else out there with a special needs kid?

kats · Mar 19, 2004

Thanks for the bump. I have been so busy today that this is the first chance I have had to respond.

WannaBEanRN, I can totally relate to taking forever to get the right diagnosis. Not only did it take a long time to have him diagnosed with ts, but then we had to go through various trials with the meds. We would start out with little amounts and then by the time we would get to a regular dose we would realize that we would have to switch to something else. We have had IEPs since he was in 1st grade. I am glad you know about your rights because you are right that the school will get away with whatever they think they can. I am lucky because my mother married an attorney (her second marriage after my father). After he retired, he started working CASE work so that he would learn more about Anthony's (my son) situation and be able to help. He always goes over the IEPs with us and has even driven down to attend the meetings a couple of times. You should see how the teachers and administrators straighten up when he is in the room too. They are actually pretty good even when he isn't there, but definately more alert with an attorney present. Plus, since he is my step-father, he doesn't even charge us at all. The good news is that you do learn little things over time. Sometimes they don't work forever and you need to change to something new, but at least you learn to be very flexible.

mommythegr8, what you thought about ts is so common. That is all they show in the media most of the time. In actuality, it is less than 1% of the people who have ts that show that symptom. As I am sure you know, anything with syndrome in the name is just a group of symptoms that can't be labelled as anything else. Each person with ts is different than others and even different from themselves from day to day. Usually, there is a period of difficulty when the child is first diagnosed. Once things stabilize, there is a brief period where things aren't as bad. Then when puberty hits, all bets are off again. That is where we are again. Supposedly, when the hormones start to settle again things get better again. One important thing to remember is if your son has OCD, it can actually end up being a good thing when he becomes an adult. There are famous sports players and actors and very successful people in other fields that owe their success to the drive that accompanies the OCD. Also, while it is a sad book in some ways, it is also inspiring due to the ignorance and increased difficulties associated with the time and setting, "Icy Sparks" is something I would recommend you read if you haven't already. Another one is "The Rescue" by Nicholas Sparks. Get your kleenex ready while you read though. As for how he presented, it was a number of tics and inability to concentrate. We eventually saw a NP who asked questions for about 3 hours and then saw a pediatric psychitrist/ neurologist who made the diagnoses. He is now taking BuSpar for anxiety and Risperdal for OCD. His only tic right now is that when he gets tired or anxious, he starts looking up and has a hard time stopping. We have taught him to focus on his index finger for a few minutes and that usually snaps him out of it. Another thing that in the past has helped, believe it or not, has been just a bit of cooled down coffee. The caffiene tends to have the reverse effect of kids with ts than what would happen with other kids. It seems to help them get back in focus. Just a couple of things to discuss with the psychiatrist. Of course, the meds your son will take will depend entirely on his individual situation.

Achoo!, my son also has been labelled "ed". He has been going to a special school where he has counseling available and less kids per teacher. He has made so much progress that he is now being slowly integrated into a regular high school. Of course, with everything else it can sometimes be one step forward and two steps back from time to time. Just remind yourself that his emotions are his emotions and not yours. I would get myself sick from feeling his emotions too much at times. Also, the very best thing I have ever done is time outs. It is important for you and him. He can be in a quieter place that has less distractions to upset him and you can have some distance. There would be times that Anthony would get even more upset at first when I would send him to his room, but it would never last long and then he would be able to get in control of himself. They even use this technique of seperating him from the class at school to a quiet place now and it has helped there too. They just get overstimulated and can't process sometimes.

To all of you, thank you so much for replying. I am sorry about the length of this post, but I could probably write a book from everything I have learned from being Anthony's mother. Once when asked what college degree I had, I responded that I have majored in my son. Another thing for all of you to keep in mind is that kids like ours have difficulties in some areas, but are usually exceptionally intelligent and caring. I know Anthony has some amazing qualities that I just love about him. Keep in touch and let me know if anything happens to any of you that you want to just vent or bounce ideas about or whatever.

Trauma Columnist · Mar 20, 2004

Kats - I would recomend the ConductDisorders.com board. I post there quite a bit and my name is Judi there. They are wonderful - nonjudgemental and reliable. Good luck...I have an older child - it is so important to get them the correct help when they are younger. Take care. If you like, you can PM me.

Trauma Columnist · Mar 20, 2004

Kats - I would recomend the ConductDisorders.com board. I post there quite a bit and my name is Judi there. They are wonderful - nonjudgemental and reliable. Good luck...I have an older child - it is so important to get them the correct help when they are younger. Take care. If you like, you can PM me.

patti101 · Mar 20, 2004

When my middle son was less than 24hr old (1984), doc came in & told me that he had ocular albinism, and, that he would be legally blind. Had to have him write it down so I could tell dad...He was ALWAYS sick, at 15mo, we were told he had a PDA, & we should see the genetic people at the University Hospitals...Dx: Hermansky-Pudlak Syndrome..This Dx was in 1986, at that time there was not but a couple of articles published...now there is an ongoing research at the NIH & at the National Human Genome Research Institute with the GREAT DOCTOR William A. Gahl as the clinical director...

Lots of challages, & lots of fun raising this boy with his two brothers. He's a freshman at college. Has no fear...called mom from the ski lift in Keystone to say he was having a great Chriistmas break...he is legally blind, acuity not correctable. We live in the midwest in a rural area and I think he is the only person in the state with HPS.

When he was still a toddler, 2 or 3 yrs old a girlfriend called me one afternoon to say that she and one other friend had been watching Sally, the daytime talk show person & they believed that a mother with a child with HPS had been guests, the show was over. Until that that time I had never even met anyone with HPS...I sent for the transcript and found NOAH, National Organization for Albinism & Hypopigmentation where through the newletter was able to make contact with this wonderful mother whose daughter has HPS...it was so wonderful to speak with another mother!!!!!!!

HPS is a genetic autosomal recessive disorder that causes albinism, visual deficit, platelet dysfunction & prolonged bleeding time, with progressive s/s of pulmonary fibrosis, inflammatory bowel disease, & kidney disease. Information can be obtained at the HPS Network, Inc. web site- medhelp.org/web/hpsn.htm...

Thanks for listening...

patti101 · Mar 20, 2004

When my middle son was less than 24hr old (1984), doc came in & told me that he had ocular albinism, and, that he would be legally blind. Had to have him write it down so I could tell dad...He was ALWAYS sick, at 15mo, we were told he had a PDA, & we should see the genetic people at the University Hospitals...Dx: Hermansky-Pudlak Syndrome..This Dx was in 1986, at that time there was not but a couple of articles published...now there is an ongoing research at the NIH & at the National Human Genome Research Institute with the GREAT DOCTOR William A. Gahl as the clinical director...

Lots of challages, & lots of fun raising this boy with his two brothers. He's a freshman at college. Has no fear...called mom from the ski lift in Keystone to say he was having a great Chriistmas break...he is legally blind, acuity not correctable. We live in the midwest in a rural area and I think he is the only person in the state with HPS.

When he was still a toddler, 2 or 3 yrs old a girlfriend called me one afternoon to say that she and one other friend had been watching Sally, the daytime talk show person & they believed that a mother with a child with HPS had been guests, the show was over. Until that that time I had never even met anyone with HPS...I sent for the transcript and found NOAH, National Organization for Albinism & Hypopigmentation where through the newletter was able to make contact with this wonderful mother whose daughter has HPS...it was so wonderful to speak with another mother!!!!!!!

HPS is a genetic autosomal recessive disorder that causes albinism, visual deficit, platelet dysfunction & prolonged bleeding time, with progressive s/s of pulmonary fibrosis, inflammatory bowel disease, & kidney disease. Information can be obtained at the HPS Network, Inc. web site- medhelp.org/web/hpsn.htm...

Thanks for listening...

Gompers, BSN, RN · Mar 20, 2004

I don't have any children myself, but my cousin has ADHD and Tourette's. It also took them awhile to diagnose him - first were going to keep him back a year in school because he never seemed to be paying attention or participating. Then they realized that he had very high test scores so maybe he was bored, and considered bumping him UP a grade. :uhoh3:

My aunt said that when he was alone with them at home, he did sometimes have verbal outbursts from the Tourette's but that he held them in when he was in public. I remember seeing a show abou that - kids would hold it all in and when they were in private they'd just have to let go sometimes. I never heard him swear, but he did make this one noise all the time and had a neck tick.

Finally they got the diagnosis and he was put on Ridalin, but he had a bad seizure because of it so he couldn't take it anymore. They had him on a whole mix of medication for years...prozac, haldol, even steroids I think. Now he is only on prozac, and they think it's because he's past the initial hormone surge of puberty (he's 17) so that may be why he's gotten better. I still see symptoms, but they're not as bad as before. Don't know if he's tried Straterra though...maybe it would help?

Gompers, BSN, RN · Mar 20, 2004

I don't have any children myself, but my cousin has ADHD and Tourette's. It also took them awhile to diagnose him - first were going to keep him back a year in school because he never seemed to be paying attention or participating. Then they realized that he had very high test scores so maybe he was bored, and considered bumping him UP a grade. :uhoh3:

My aunt said that when he was alone with them at home, he did sometimes have verbal outbursts from the Tourette's but that he held them in when he was in public. I remember seeing a show abou that - kids would hold it all in and when they were in private they'd just have to let go sometimes. I never heard him swear, but he did make this one noise all the time and had a neck tick.

Finally they got the diagnosis and he was put on Ridalin, but he had a bad seizure because of it so he couldn't take it anymore. They had him on a whole mix of medication for years...prozac, haldol, even steroids I think. Now he is only on prozac, and they think it's because he's past the initial hormone surge of puberty (he's 17) so that may be why he's gotten better. I still see symptoms, but they're not as bad as before. Don't know if he's tried Straterra though...maybe it would help?

Nurse2bSandy · Mar 20, 2004

Our 9 year old son is autistically impaired (PDD-NOS) and bipolar disorder. This makes for a very challenging child! I was an experienced mom who thought she knew it all until David!

I must say he is the reason that I am in nursing school though... and I will probably become a psych nurse.

Yes, we know all about the delayed diagnoses, IEP challenges, and day-to-day struggles of having a special needs child. It's exhausting... but I am a better person because I am his mom!

Oh, and today I am feeling very blessed... Dad just took him and his sis on an 8 day trip to CA to visit family while I have a school "field trip". I will have 8 days without the responsibility of him... I can turn off my cell phone... what a blessing! I'm off to bed now! :)

Nurse2bSandy · Mar 20, 2004

Our 9 year old son is autistically impaired (PDD-NOS) and bipolar disorder. This makes for a very challenging child! I was an experienced mom who thought she knew it all until David!

I must say he is the reason that I am in nursing school though... and I will probably become a psych nurse.

Yes, we know all about the delayed diagnoses, IEP challenges, and day-to-day struggles of having a special needs child. It's exhausting... but I am a better person because I am his mom!

Oh, and today I am feeling very blessed... Dad just took him and his sis on an 8 day trip to CA to visit family while I have a school "field trip". I will have 8 days without the responsibility of him... I can turn off my cell phone... what a blessing! I'm off to bed now! :)

LolaRN · Mar 20, 2004

My daughter is 7 and has ODD and possibly OCD or bipolar. She also is a roller coaster. Every day when I pick her up from school, the screaming starts. I can't say anything to her without her being combative. At least now that she takes med, she is not aggressive. School is a constant challenge. She is very bright but won't try. Plus, she still writes things backwards and wets the bed. I am starting to wonder if she has a learning disability too. Other child is extremely easy. Sometimes I wonder how they came from the same parents. 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.

LolaRN · Mar 20, 2004

My daughter is 7 and has ODD and possibly OCD or bipolar. She also is a roller coaster. Every day when I pick her up from school, the screaming starts. I can't say anything to her without her being combative. At least now that she takes med, she is not aggressive. School is a constant challenge. She is very bright but won't try. Plus, she still writes things backwards and wets the bed. I am starting to wonder if she has a learning disability too. Other child is extremely easy. Sometimes I wonder how they came from the same parents. 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.

renerian, BSN, RN · Mar 20, 2004

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