Uplifting Advice for a Mom Overwhelmed When It Comes to My Speacial Needs Child

T.-
My son was diagnosed with severe AD/HD at 3! And, this was through a psychologist who went into the evaluation telling me that he didn't "diagnose" AD/HD that young. Well, a hour and half of my son's "typical" behaviors and we got our diagnosis! I knew I wasn't crazy....

That being said. I haven't noticed any tics yet. I do know that Tourette's and AD/HD can be somewhat related. Could it be medication related? I know that some stimulants have a higher rate of "tic incidents". My son is currently 5.5 and on Dexedrine Spansules. He does sometimes get "stuck" in a particular thought process, but no physical reactions have been seen so far. My son was also diagnosed with a variety of other conditions at some point or another. SPD (sensory processing disorder), ELD (Expressive Language Delay) and Emotional Dysregulation (whatever the heck that means!).

What state do you live in? I live in PA and here, my son qualifies for Medical Assistance just b/c of these disabilities. I also carry him under the insurance plan I have through work, but we get some things that we couldn't get through my plan with the Medical Assistance. One of them being wrap-around services. My son gets Behavioral Support Consultant and a Mobile Therapist. That has worked out great over the last couple of years. They work with us in the home, out and about in the community and at school. Oh, and his AD/HD meds and stuff are free through this plan.

If your state doesn't offer this, I would strongly suggest asking your son's school about having a discussion with the school psychologist. Most have them now and if the indiv. schools don't, the district almost surely does. They can probably recommend a service to you with at least a sliding scale for payment for counseling, etc. Or, do you or your spouse/significant other work for a company that offers EAP (Employee Assistance Services)? They offer 5 or 6 free counseling sessions for anyone covered under that person's medical plan and then can suggest someone who you could afford to see.

Sorry to go on and on. Your request just hit very close to home. Please feel free to reply if you ever need a friend or support or anything. I would gladly be there to lend and ear, shoulder, whatever.

GOOD LUCK!!!

Jen

Please, do some research on line to alternate medicines for ADHD, the medicines for this are sometimes worse than ADHD...
and may cause other problems... Your Dr. won't tell you this but read the studies yourself and you be the judge...
N.

I'm not sure what area you live in, but if it's anywhere in Bucks or Montgomery County, PA, the Lenape Valley Foundation is funded though Medicaid, and they are wonderful. My son is Autism Spectrum and we have been working with a behavioralist through their organization that I can't say enough about.

Hi: My name is D. i work as a program coordinator for individuals with all sorts of MH and MR issues. I am also a stepmother of a 12 and 14 yr old boys both of which have been diagnosed with ADHD/ depression/ and the 14 yr old i think also has Opositional defiance disorder. So I know oyur pain well!! My advic e to you is to be firm, consistent and loving. Read..read..read there are some great books out there. Also your local hospital and churches will have support groups and seminars to assit you as well. As far as counseling goes he NEEDS it to be succesful even if his onyl issue turns out to be ADHD. Where do you live??? I ask because that will better help determine on how to work with the insurance issues. Some doctors will see you probono until the ins. kicks in. When calling doctors be honest, tell them exactlly what is going on and if they cant help ask if there are any that might. Keep in touch and let me know how things are going..maybe something that works for you may work for me.

I do have a special needs child, and knowledge is the key. Many doctors, nurses, just people in general don't understand how overwhelming it is to have a child with special needs. I have a daughter who is 10, my son is 9. When I had him I was 19. The doctors were amazed that at my age, and I'm sorry to say my ethnicity(African-American) that I was so involved and asked so many questions about my son when he was diagonosed with CP. I didn't know what it was so I asked questions, did research, found clinics and doctors that did take Medicaid and I researched and tried to get the best care for him. I actually had to push and ask is there anything you can do to help my son, till this day if I would have not opened my mouth and asked that one question my son would not be walking today. There was a surgery available and the doctor said he was a good canadiate, but in the back of my mind wonder I always wonder why he did not tell me about it. Sometimes they treat you like a stastic, because they see so many kids with conditions and they deal with it everyday, some doctors treat it like it's just a job, that is my son. They did not even offer the option to me I had to ask! ASPIRE, formly United Cerebral Palsy Association deals with Medicaid, they have Case Managers that actually do alot for you. Anything you need, from referals, money, equipment, anything they help you get it. I have a wonderful case manager, she refers me and for all types of things, not only for my son but my daugter. I get free tickets to all sorts of stuff. I sent both my kids to camp this year through them.

Hi T.,
Let me start by saying that I am a high school teacher w/a 4month old son. I have had MANY children in my classroom that have ADHD, Tourettes, or both. When I see these kids they are about 13-20. There are so many unknowns with these disorders that I can completely understand your frustration and feelings of helplessness. Here's what I KNOW to be true, both from research and experience. These disorders can mask a brilliant child that desperately need to have their intellectual needs met. All to often (Tourettes especially)these kids are grouped in with the learning disabled, except their "disability" is behavioral/physiological not intellectual. Your son is not physically able to control his impulses, that probably interferes with his ability to learn and/or complete tasks, from cleaning his room to doing his homework. I know what I'm about to ask of you is incredibly difficult, but try to remember that ALL kids have trouble with these things. Your son's trouble is much more intense. This is just as difficult for him to deal with as it is for you, maybe more so. He is not only dealing w/his disorder, but how everyone in his life reacts to him because of it.
I say this to you because you're most likely so focused on his problem and helping him, that you may be forgetting to find the greatness in him. This helped me most when in particularly dangerous situations with my favorite ADHD/Tourettes students. He was 18, a football player, HUGE, and prone to outbursts of fantastic rage when he was unable to complete a task that all of his peers were easily able to master. He once hurled his desk across the room, and purely by luck it just bounced off the window frame and didn't go through the windows, 2 stories up. Re-directing just doesn't cut it in that situation. The kid has to be reminded frequently that there are a million things, okay, maybe a hundred things, that they do really well, and the hard stuff can be hard for anyone.
He is feeling just as much frustration as you are. Only he is 9 and you are the adult. Cry in private, but keep your cool when he is losing his. I know how much you love your son, I know how hard it is to keep calm when a "battle" presnts itself. I'm sure you're doing the best you can. Don't forget to take a moment for yourself if you can find one. There are more and more medical options for these disorders so keep hope.
I have some research for coping if you'd like. I'll have to dig through my files for it. Look into support groups in your area also. That would give you some more readily usable info.

T.,
You have so many challenges right now- you are a strong woman and will make it through. I would suggest getting an advocate to deal with your insurance issues. United Mental Health Alliance would be a great place to start. I have needed advocates a few times - you need to call at least ten and find the one you want to work with, then let them do their stuff.
I have also used my representative as an advocate before, it took a month & a 1/2 before anything was finished and I had to keep calling to check in - but once they got to the correct person- boom - it was accomplished immediately. Take care and keep the faith!
J. :)

T.

I'm not sure I have advice but am struck by all the things you're dealing with and had to respond to say that YOU ARE DOING A GREAT JOB! take a deep breathe and look at your support system - your husband, your ex, your family, friends and mom's in your circumstance b/c you need some relief - you sound like a great and caring mom and you will do the best for all of your children - the fact that you wrote shows that - I'm not sure where you're located and wish I could help (I'm a social worker in Pgh) - look to agencies serving kids and families to help you - even your local children and youth should have a resource person that could point you in the right direction - ask the hospital for a social worker and have them person w/ you during doctor's visits to help you process and keep track of info, offer support and help w/ linking you to other providers to help you. I wish you and yours all the best - please keep us updated and take care of yourself - if you don't you won't be any good to anybody.

Rene'