Scared, lost, stressed, sorry long vent

I thought things were getting better with Wil. I have noticed an improvement in his speech and behavior since he started preschool, and he gets along so much better with his brother. But I would be lying if I didn't still worry about other issues. I told you that during one of our last in-home speech therapy sessions, the ST mentioned that Wil may have SID. She explained that she wasn't an expert in that area, but that she saw some signs. I spoke with the service provider (the one that both boys get state funded services through) and was told that Wil probably doesn't qualify any longer for free services, so I would have to look elsewhere and pay for an OT out-of-pocket. She also suggested that I wait until he was fully adjusted to school before getting him retested since the transition alone could be a reason for his temperamental behavior. So I waited and pushed the thought of him having SID in the back of my mind, just trying to ignore any signs, telling myself that he was just being a typical 3 year old. I told myself that his unwillingness to potty train was just a result of my failure to train the right way. Making excuse after excuse, telling myself that he is just "stubborn", which has just made me more stressed, he as well. Well it all came down hard on me last night - the worry and the fear and the realization that there really ARE more issues. I'm really at a loss as to what to do next. I don't know where to turn because no one seems to fully understand. There is so much conflicting advice out there, even from professionals (peds especially)......I have one side telling me that I'm not doing enough, that every step I make is wrong, that I need to practice tough love. Then the other side says don't push, I'm over-reacting, he will do it on his own time, he will grow out of it, he is just FINE. I just can't find the right support and I'm lossed you guys, stressed to the gills. So although I know it's often a bad idea to research online, I did last night and found that Wil really does fit in many SID categories. More than I can really describe in detail here without writing a novel. Although his speech has improved since last year, he is still way behind and he has the hardest time following simple instruction. I feel like I walk on egg-shells around him all day because whatever I do (or DON’T do) may make him crack. I’m constantly stressed because I feel the need to cater to his every need. One minute he is happy as a clam and the next he is rolling on the floor in rage. Group activities, forget it. And maybe this has nothing to do with SID, but Wil has complete resistance to potty train. He will sit in his soiled diaper all day if I let him (he is almost 3.5). The more I push, the more he pushes back - he truly doesn't get it. And the more I read, the more I've learned that PT is not a one-size-fits all milestone. Just because one kid learns in one day, doesn't mean another child can do the same, nor does it have anything to do with parenting skills. So I feel a tiny bit better reading this, because I can’t stop believing that it's all my fault. I read that kids with learning disabilities will typically be delayed in PT as well. That they can't master PT as quickly as other children their age because they aren't mentally or physically ready yet. Then there is the history of dyslexia in DH's family - and I see how it is all related, the SID and dyslexia, the visual and auditory processing issues that Wil clearly has. DH and I talked for hours last night and he explained how he has struggled all his life, how kids and adults teased him, how he still worries that people will judge him at work for his disability...and I lost it you guys. It's like it all came to a head last night, the realization that my child will probably always have a difficult time in school, socially and academically, and that Wil is genetically destined to have the same disadvantages DH has, even as a grown man. Not to mention the anxiety and OCD issues that I have (all of which could be related to SID). I realize that DH and I can give him all the right resources to help him through life, but it's realizing that the rest of the world is not always so kind and understanding that hurts most. It's probably the hardest knowing that these disorders have no cure. And please don't think that I'm personally ashamed to realize all of this, because it's not about me, it's about Wil. I am so afraid that HE will feel ashamed for his disabilities, less fortunate than his peers, constantly compared to his brother (who doesn’t seem to exhibit any of the same signs). I am scared that he may look for negative ways to cope. Both DH and I did (I still do). I know I can’t predict Wil’s future, and when I look back and read this, I sound like I’m totally over-reacting (my gosh he is only three!), but having DH’s insight gives me mixed emotions – On one hand I am extremely hopeful since my DH is very intelligent and a successful man, but on the other, I am fearful because it took a rough road for him to get where he is today. A lot of self-doubt, A LOT of tutoring, a lot of experimenting with the wrong things. I just want to see Wil happy you guys. He seems so lost lately.

Rae, I don't know what to say but I can see you are stressed - email or pm me anytime! I can listen

I don't know what to say either, but my heart aches for you

On the PT, I know it can become a nightmare if the child sees it as a control issue, is there any chance that that is separate from the other things going on? If he knows how bad you want him to PT and he sees it as a way to assert himself? I could be way off base on that, just throwing it out.

Hang in there, I want to say don't beat yourself up but I know that is much easier said than done

Huge hugs for you!!

I understand about a lot of these feelings. Of course our children all have different issues but I want to say something about SID and OT. From what I have read and from what I have come to understand from research. MANY things that relate to SID can actually be "cured" so to speak. When you get a child as young as yours, you have the ability to actually change the neural pathways. My nephew is 7 and my niece is 12. They were both diagnosed with SID within the past couple of years. My niece with a form of dyslexia and auditory processing, my nephew with fine motor skill delays and proprioceptive issues as well as a form of dyslexia--all this to say---the OT informed my SIL that they will work on coping skills with my niece but they can't actually "fix" the problem due to her age. With him, they said, he should be able to overcome his SID due to the young age he was diagnosed and he was 6 at the time. Both have come MILES from where they started--and they were very normal kids to start with.

Our insurance is crappy when it comes to paying for Jama's OT but many times places will work with you if you are self pay and many insurance plans cover it completely. You are catching this early--I imagine your husband's was not caught and treated. I have seen big changes in my daughter and it is amazing. If you can, just get an assessment from an OT that specializes in childhood SID issues. Our assessment was about 250.00 but well worth it to talk with a therapist and get a feel for what they had to offer.

When I had all of my questions, my first phone call was to a child development specialist (not my pediatrician) they referred me on to the OT. Try not to take parenting advice from your pediatrician, for some reason we all assume they know more than we do but often that is not the case. They are schooled in medicine and not parenting. Go with your gut and your own research, you will know what to do.

Again, big hugs to you, you are doing a great job and clearly understand your son.

Monica, yes, it could very well be seperate and just a power struggle, a way for him to feel independant and in control. I'm so unsure as to why he is resistant. I read last night about PT and issues of control and that some kids like the negative attention they receive from NOT going. I'm not sure this is the case with Wil, since I try hard to stay positive and never punish him, but who knows. After having Wesley, sometimes I do think Wil seeks attention any way he can, negative or positive. He tells me he wants to stay in a diaper, so again, not sure if this means he's just not ready or he wants to remain in control. Wil has always reached a milestone on his own clock. I know when I tried just about everything to get him to walk before he hit 18 months, he resisted and took a long strike. Then when I backed off, he started walking (at 18 months exactly). Late, but he got there. I see PT as the same, but then a part of me feels that it could definitely be directly related to other issues, maybe SI, maybe not (which btw, if anyone has experience with this, please do share). Since I haven't had him tested by an OT in over a year, I'm really not sure what to think anymore.

I wanted to add to my post that his resitance to PT is not the only reason leading me to believe there are SI issues. I took him to the library last week for storytime. It was geared for his exact age group (3's), I wasn't pushing him to be an awkward situation with older kids. But he completely lost it you guys. Excited at the thought of going to the library, but once he reached the room where kids were sitting in a circle, he threw himself on the floor whining and rolling and telling everyone to "shhhh". It was like he was trying hard to get control of his little body, but was flailing around like someone was kicking his side or yelling in his ear, which of course they weren't. He even told the storyteller to be quiet. When this happens, his speech becomes total jibberish. Nothing makes sense. And the more I try to get him to "use his words" and stay calm the more mad he gets mad. Again, maybe a power issue, but if I just try and ignore him, it doesn't help either. I tried scratching his back hard to see if it would help calm him down, and it did for a while, but just not enough. This is just one of many experiences.

I also wanted to add that it's not only his ped that doesn't seem to understand or give me the support I'm looking for. It's his teachers too. I am so afraid to even mention SI to them in fear that they aren't educated or quite possibly non-believers in the topic. It is possible. I don't want them to "seek out" the bad behavior in Wil, kwim? As if because I tell them what happens at home, they then create a label for him at school. I want him to be treated equally, but I also want help. Because of his speech therapy, he isn't required to be PT for school, but I also was told that his teachers would work on it with him. Well this appears to NOT be happening. I picked him up last Thursday and had one of the assistants say to me "I'm so sorry that Wil is probably super wet. He wouldn't let me change him, but then I forgot to try again". Now a part of me says no big deal, she is busy with other kids....But then the other part is wondering, is this how they treat everything else he may be diabled in doing? Move over him because he shows resistance? Do they just not have the time to focus on the kids who have special needs?

Again, I don't know where to turn. DH and I agreed last night that I will call the service provider to get a list of OTs and make an appt to get him tested. We will pay out of pocket of course. This has to be the next step I suppose. If anyone knows a different approach, I'm all ears. I hope I haven't made it sound like I don't want opinions here, I do. Thanks

Thanks Brenda, this REALLY helps! May I ask where did you turn to find a good childhood development specialist? I went through the school district to find the organization that tested Wil for speech delay. The free ST services have been wonderful, but with no offense to anyone, I wonder at times whether out of pocket versus state-funded would make a difference in the quality, kwim? The STs and OTs from the school district see A LOT of kids, so I wonder if things are being overlooked. I can never get a straight answer out of his preschool ST.

Thanks Jen, that means a lot.

I don't have any advice, but I wanted to send you some . Hang in there.

Rae, when jake was being tested it was thru early intervention, and we were never asked how much we made, or anything, our ped recommended it and it was totally bases on his abilities at the time. i would think he would still qualify for help. can early intervention get him the therapy he needs? i was also under the impression that if he wasnt done with therapy by the time school started that they send someone to his school with him, is it possible for someone to go to preschool with him to help his teachers and him get into some consistant behavior modification?

I so know how you feel, i have spend many hours, worrying how jake is going to feel as he grows up and what kind of teasing and issues are going to come up, and wishing he was just "normal' not for me but for him. life is so hard as it is.

karen really is a good resource with this..she has helped me thru it.

if there is anything else i can help, even just listening..let me know.

If you have to pay for this out of pocket Rae, just call up a child OT and get an evaluation yourself. I'll tell you this. No one believed that Megan had problems except the feeding team we were seeing. They suggested I go to the OT and we did. The OT and I talked and she was adamant on being able to tell me what things Megan had that were SID and what things were not. She evaluated her and knew right away that she had SID. Even though it's hard everyone else questioning me, including DH sometimes, knowing that there is one person who sees Megan has this issue makes me know I'm doing the right thing by taking her in. So IMO you will be able to solve all your fears, per se, by taking him to see the OT. They will be able to tell you right away if he has it or not. Then IMO it doesn't matter what else anyone thinks - you know at that point you are doing the right thing. I feel so comfortable with Megan's therapist and I can tell her all my frustrations and issues that we are going through with Megan. We had one this week and she had to tell me it wasn't an SI issue, but more of a feeding issue and we needed to go back to the feeding team BUT she also gave me ideas and is going to help me implement them in helping her with her food issues. She's great.

Brenda is right on too with everything she said.

I know it's hard. I compare Megan to Kylie every day. It's strange that Megan at 2.5 is just now doing something that Kylie did at 1.5.

I just read your other post and the description of story time sounds exactly like a Sensory issue, not a power one. I don't think I would bring it up to his teachers until you have something in hand to explain it to them. A good OT can give you both the materials and the words to share with professionals. For example, Jamison wiggles and messes around with things during circle time in Kindergarten, she'll take her headband off and on numerous time, she'll play with a rubber band twirling and twirling it---one day the teacher had one of Jama's hairbands in her pocket because she had to take it away from Jama because she was playing with it. I spoke with her OT about her inability to sit still (previously she would have been labeled Hyperactive), the OT said, her playing with rubber bands etc. is a great coping skill she has learned on her own. I shared information with her teacher and now she is allowed to hold the teachers stress ball during circle---no more problems. Easy solution but I needed to be armed with info before I shared the "label" with the teacher.

Auditory issues like you described are a common sensory problem and one they can do great things for.

I am not familiar with SID and PT but I wouldn't doubt there is a connection. The two (power and SID) can be completely related. If he feels he has no control over some aspects of his being, he may in turn take control over what he can. I really think all these issues even if they are not sensory related can go hand in hand.

After I got Jamison's OT evaluation it felt like finally, someone could tell me what I already knew and could help me.

Yes, I'm sorry I didn't mention this, but Wil's ST is through EI. He was tested about a year ago and he qualified for in-home ST and free preschool (started this last September where he now gets ST there). A year ago, he was tested by an OT, ST, school psychologist, and a couple other professionals that I can't remember. They all watched him play and chatted amongst each other. Wesley was just an infant so I sat there and nursed him and didn't have the opportunity to take it all in. He had passed every test but speech. He did great in both fine motor and gross motor, problem solving skills, etc. So there wasn't any other concerns then. But now I'm thinking otherwise. I believe the reason why he no longer qualifies is because we have already BTDT with the in-home ST and because services supposedly end once he turns three and has started preschool. That's what I was told, but I could be wrong. This past year has been sortof a blur, so I'll have to ask again.

We are currently receiving EI for Wesley through the same organization, physical therapy that is (yeah, one more thing on my worry list ). So it just so happens that the service provider is coming to my house tomorrow for a follow-up on Wes. I'm going to talk with her then and mention my conerns about Wil. And I'll see what she says. It never hurts to ask again. The least she can do is give me some resources outside her organization (that's her job). We have med insurance, so it really isn't a problem to pay out-of-pocket, but it would be nice if we don't have to.

Thanks for everyone's replies. Karen and Brenda and Calebsmom (sorry I can't remember your name), thank you for the insight. You gals know a lot and it helps knowing I'm not alone.

BTW, I put Wil in underwear yesterday because he asked for it and he had about four accidents in less than two hours. I am going really slow this attempt, but I really think he physically isn't ready. I will take him to the potty and he will pee in the hall on the way to the bathroom. Or he pees in the kitchen after going potty five minutes ago. That tells me his mind and body just aren't ready. I may talk to the ped on this one to rule out any medical reasons. But it will be interesting to know if it really is related to SI.

Rae,

Megan's therapist said she will more than likely potty train real late due to her SI. Megan has gone poo on the potty on occasion, but has never been able to go pee. She can tell you when she's went, but has no clue on when she's really got to go before hand.

Good to know. Wil can go pee and poo on the potty, but he NEVER tells me when he has to go. He seriously prefers his diaper, that's what he tells me.

Rae I'm so sorry you guys are going through such a tough time with Wil!!! I wish I knew more to say