DS2 likely has language based learning issue ENOUGH ALREADY

[hillview]

So maybe this belongs in the BP but ...
DS2 has just been evaluated by his teachers and a specialist with a language based learning issue. He hasn't had a neuropsych eval but it seems like "dyslexia" based on his results.

DS1 had a dyslexia dx about 2 months ago and DS1 ALREADY has a prelimin dx of NLD and AHDH with poor impulse control. Oh and we think DS2 needs an OT (DS1 has one already).

Honestly it seems like this is becoming a full time job to sort out. I have spent no less than 5 hours in meetings and on the phone with people THIS WEEK to sort out stuff.

I am so glad we caught it early with DS2. I just have NO idea where to start with him in terms of sorting this all out.

DS1 is much easier -- OT and dyslexic school next year and we should be in a good place and on a good track.

DS2, so far needs weekly psych / therapy; weekly OT now; weekly (or more?? no idea) help with his language based issues AND still I feel like we are just scratching the surface in terms of getting him to a good place and on a good track. We are MAYBE treading water? Or worse.

Who helps parents in these situations. I talked to an education specialist today who charges 5 THOUSAND dollars to help you find a good school for your special needs child. Um ok. I am not sure that is the right answer ... SIGH.

Thanks for reading

[ArizonaGirl]

Oh honey, I don't know what advice to give you, just to tell you I feel like I am right there with you.

DS has ADHD and likely some sort of other issues going on (headed to the developmental ped later this month) and now DD has her 5th ear infection in her right ear which also always has fluid in it so we are headed to the ENT in a couple of weeks.

She has also had PT for low muscle tone and will likely need some gynecologic surgery down the road.

I feel like between DS and DD I could easily spend 40 + hours a week dealing with the Drs and insurance and appointments, etc.

And... neither one of mine have started formal school yet (DS starts in August).

[hillview]

Thank you Lindsey!! SIGH it is hard.

[egoldber]

I was just joking with a colleague, who also has 2 children with special needs, that many days it's like playing whac-a-mole. You get one thing settled and the next thing pops up!

DS2, so far needs weekly psych / therapy; weekly OT now; weekly (or more?? no idea) help with his language based issues AND still I feel like we are just scratching the surface in terms of getting him to a good place and on a good track. We are MAYBE treading water? Or worse.

I have learned over the years that neither we (DH and I) nor the kids can do everything all at once. It takes too much mental energy. Whenever I have worked on too many things at once, we just end up burned out and frustrated. Every year we evaluate which things we are going to work on for each kid and then go from there. I know that it feels like there is this huge pressure to try and fix everything all at once. I have to keep reminding myself that this is a marathon, not a sprint.

[hillview]

I was just joking with a colleague, who also has 2 children with special needs, that many days it's like playing whac-a-mole. You get one thing settled and the next thing pops up!



I have learned over the years that neither we (DH and I) nor the kids can do everything all at once. It takes too much mental energy. Whenever I have worked on too many things at once, we just end up burned out and frustrated. Every year we evaluate which things we are going to work on for each kid and then go from there. I know that it feels like there is this huge pressure to try and fix everything all at once. I have to keep reminding myself that this is a marathon, not a sprint.

yes whackamole. Yes a marathon is a good way to put it. I feel pretty overwhelmed with DS2 who has NLD (ish?) which has a WHOLE set of issues, ADHD with poor impulse control AND dyslexia AND needs an OT/Sensory Processing work. So far I am prioritizing:
- Get behavior in class room to a reasonable (not perfect) place so he isn't a "bad kid" in school with all the negative social and teacher issues associated with this to do this we need medication and therapy and possibly something else I don't know yet
- Poor impulse control is basically on hold or being addressed above with behavior
- NLD issues are largely managed by education plan/teacher skills for now; later he will likely need significant other help here
- OT is hired and should be coming in in a few weeks. should also address the sensory stuff for now
- Dyslexia, right now school is doing 1x week short vowel work, seems like a minimal approach, need a better plan here, summer tutor and then no idea what to do next year

SIGH. It does help to at least write that all out!

[KpbS]

Could both boys go to the same specialized school? That might simplify things--esp. if they could accommodate the OT during the school day also.

Sending hugs!

[lovin2shop]

No experience to share, but it sounds like you have a good plan! For work, I've always been a list person, and when I'm feeling especially overwhelmed, I write out every single to-do item I can possibly think of, and then I put a H,M,L next to the items for prioritizing. Now that my kids are getting older, I find myself doing this more often at home than work! Hang in there, I'm confident that you'll get a workable system down to address all the issues!

[Pepper]

I'm right there with ya...DS1 is still not really sorted out the way I'd like, and it looks like DS2 is having some issues that can't be explained away by a 5-year-old's attempt at coping with his grief. Just had DS2's annual pedi checkup and walked away with referrals for the developmental ped and an allergist. Sigh.

With DS1, what's helped a lot was getting him onto our state's Medicaid program - in MA it's called CommonHealth, which is the version of the plan offered to children with disabilities (and others) whose family income is exceeds the limits for MassHealth (i.e., the MA Medicaid program). We get wraparound services though a local agency and the best thing about it is how well they know his school, his psychiatrist, his counselor...we have care plan meetings monthly, every other month it's at the school & it has been SO GREAT to have almost everyone involved in the same room at the same time, to really get all the input on how he's doing and where we should focus next.

Trying to think of another resource for you that won't charge you $5k to find a good school (yikes!). ..If you don't have your DS2 in a MassHealth equivalent program for your state, or if there isn't one, the school adjustment counselor might be a resource for you. Or your local SEPAC (Special Ed Parent's advisory council), if your school district has an active one. Or your local version of the Federation for Children with Special Needs (http://fcsn.org).

[BunnyBee]

I'd check with the school DS1 is attending. The two big dyslexia schools in my area also accommodate ADHD diagnoses along with other "mild" LDs. One of the smaller ones a friend's niece attends has an OT and PT on staff.

[inmypjs]

Do you have a Decoding Dyslexia group in your state? They are a parent-led group and might offer some support or resources. I am very active in my group and one of the things we do is help connect members together who close to each other as well as give out lists of resources that have been used and recommended. Many chapters don't have web sites but you will find almost all of them on facebook. As hard as it is to find something positive, I'm really happy you're finding this out at such an early age. If a parent or another child has dyslexia, every other child has a 50% chance of having it, because there is such a strong hereditary component. I know families that have 3 or 4 dyslexic kids, and each subsequent kid gets help earlier than the last one, and it is really amazing to see how much easier it is the earlier you start. Hang in there.