Feeling really discouraged

[Cadam]

My dh is still a little in denial of dd's problems, or at least how bad it is. He made me cancel her therapy appointments after I thought we had agreed to them. We recently moved and everything so I know it was just to much for him to deal with but we waited months for the eval and now it has been months since the eval with no therapy.

I know a lot of it is the pressure he feels since we have to pay for all of it. He doesn't want me to make diet changes and I can't exactly take wheat and dairy out of her diet with out him buying into the concept. He is afraid of what the dietary changes will do to our quality of life and that I will just become obsessed with her therapies and everything to the detriment of the rest of the family.

She has SPD and I really think there is also something else going on but I don't know what. Someone suggested NLD and some of that seems right, but not all of it.

Frankly without money and dh's support for these interventions I can't really do anything. If I had a career and some money coming in then maybe I would be able to use some of it no matter what he thought.

He really is a great dad, just worried and stressed and he seems to be under the impression that things are "ok" or that this is a discipline issue. We are in a new neighborhood and already the kids avoid dd because of her behavior; either being overly affectionate to people she barely knows or freaking out and getting violent about small things.

I am tired of not being able to DO anything to really help. Dh has said for a long time that there was a problem but he always said ADD (which it is not) and now that I know what really is going on he won't do anything about it. I think his saying that it was ADD was safe for him because he always said he didn't want to o meds so in his mind we do nothing. He just has no idea what needs to be done.

I thought all of the therapies and stuff were harder with my son because he is my step child but now I realize that his mom was much easier to deal with than my dh and since dh wouldn't fight what she wanted ds got all the speech therapy he needed. If dd was my step child she would already be in therapy.

I think I am done with my rant now. We will be talking about this next week when dh is on vacation and I hope to come to some conclusions.

[Saralynn]

:hug::bighug: I hope that you are able to talk and that he sees that denial won't fix it and fear may keep his little girl from being the person she could be.

God's with you.

Sara

[4littlelambs]

I forget the whole story... I can't remember her age... can't the school system take over some of the therapy? I know most states stop EI at age 3... but then they go into the school system right? Even if you're homeschooling, she has a "right" (hate that word) to still get services thru the school system! Kinsa has a son that gets his speech at school right?

Does your state have any sort of Medicaid waiver for children who qualify? In Maine, it's called the Katie Beckett waiver and the child qualifies on the basis of their diagnosis... not the family income! Maybe look into the Medicaid program for that?

Could you possibly take her to a college or university to get therapy? Their students perhaps have programs that treat the public at a low or no cost?

((((hugs))))

[MommaK]

Oh I am so sorry! I agree with Susan. dd5 has speech issues and the school started working with her when she turned 4. No cost to us at all. I will be praying that dh can see what is going on and what needs to be done.

[MaeinTX]

:hug:

I don't have any advice but I do know denial is a hard emotion to overcome. I'm sorry.

[Cadam]

Thanks everyone, It is nice to know everyone cares. I really needed that today. Just FYI the school system won't do anything because it hasn't affected her education. Even if they offered OT getting the right OT would be a whole 'nother issue. The lady next door has a hard enough time getting any speech for her 7yo who is nearly unintelligible. She hired a private SLP this summer because he is making no progress.

[4littlelambs]

Thanks everyone, It is nice to know everyone cares. I really needed that today. Just FYI the school system won't do anything because it hasn't affected her education. Even if they offered OT getting the right OT would be a whole 'nother issue. The lady next door has a hard enough time getting any speech for her 7yo who is nearly unintelligible. She hired a private SLP this summer because he is making no progress.


Where's Carolyn when we need her??? :wink:

Hasn't affected her education? Joshua's Down Syndrome has affected his education yet either but he HAS it and it WILL affect his learning... I have never been told that particular excuse (altho many others)!

I JUST talked with a mom yesterday and we were talking about my son (3rd grade), who has been tested at the school but they didn't find anything 'wrong'! Her daughter was the same situation so she had her privately tested... and her daughter was diagnosed with several learning disabilities! The school HAD to honor that doctor's recommendations... do you have a doctor's recommendations??

And if the school will offer an OT, you can help getting her/him educated in the stuff your daughter needs! Most OT's will have had the basic info on all protocols... it will just take a student or 2 to put them to use! Yes, the ultimate would be one who specializes... but to get the ball rolling, any OT might help?!

I hate to see people struggle like this... it's simply not fair when I know so many other stories of kids who need more discipline than special education but are put into these wonderful programs... only to not be carried out at home, e.t.c.... okay OFF my soapbox!!

[joy at home]

I will be praying that you and dh can have the conversation you need to have. I will also pray that his eyes, ears and heart are softened and opened.

:console:

[cshoremom]

(((((hsmommi2mine))))) Praying for you..

[FabTXMomma]

I'm here - I just don't know anything that can help her.
Unless you want to sue the school district.

The fact is that you do have to prove "educational need" in order to qualify for school district services of any kind. And sensory integration is the hardest one to prove. You have to prove that their challenges make it such that they can't function in a regular ed classroom in some way. That's the bottom line on educational need.

I have heard over and over that some school districts in the US don't even have OT's or won't recognize sensory integration problems as an "educational need."

A friend of mine went through that here in Katy, TX. Her daughter's issues were not very severe though so just working with the teacher solved that problem.

It's also difficult to get related services (i.e. speech/OT/PT etc.) when you're homeschooling. Some states consider homeschooling as "private school" so the IDEA rules that apply to private schools apply. Some states just don't know what to do with it.

I would suggest: getting in touch with a homeschooling advocacy group in your state and asking them questions about how to get services for your daughter, whether it's through the school or through a private provider or a state agency or wherever. They may have suggestions we haven't even thought of. I *guarantee* you someone else in your state has been in the same or a similar situation and has gotten services for their child.

[FabTXMomma]

Also, find out if there is an Easter Seals clinic in your area. Ours is called a Rehabilitation Center. We get OT therapy there for Connor. Since our insurance doesn't cover it, we pay a fee based on a sliding scale. Our share is only $25 per session.

[Cadam]

I have a children's therapy center 4 miles from my home apparently. It would be great if we could get financial help but I won't count on it. It is a lot closer than the clinic where we did her eval. Thank you for reminding me about them. I hope we can actually get in and get services, I know they have limited resources.

Ladies, please pray that this works out or that God provides clear direction.

[Kinsa]

I can relate. :hug:

Nearly all my kids have SPD. (Both the twins due to their premature birth, my 9yo, and my 4yo. It manifests itself in different ways in the different kids.)

My 4yo was diagnosed by the early intervention program and then by the school district with speech delay and SPD. (Incidentally, the speech delay is related to oral defensiveness in the SPD.) However, he does not qualify for the OT for the SPD. Like someone said, it is like pulling teeth to get the school to provide OT unless it is for a very severe situation. They are (for now) providing speech services, but I strongly suspect that next year when he is "school age" they will drop him. I am pretty sure of it.

My 11yo twins and my 9yo all have speech impediments that rank them below the bottom 5%. However, since I was unable to prove an "educational need", they were denied services at the school. (It is very, VERY difficult to prove "educational need" as homeschoolers since I can tailor their education around the speech issues.)

My suggestion to you is to do what we have decided to do. I have hired a private speech therapist. She is not the one providing the services. Rather, she gives me what I need to know, "teaches" me to do the services with the boys myself. I call her back for evaluations of our progress whenever I think we need it, and she comes and gives me more information, etc. This is really the only thing we CAN do. We can NOT afford private speech therapy for three (next year four?) kids each week. That would put us in the poor house! This is the only affordable option, and the only one that works.

As for the OT that is needed, we did the same thing last year. I had hired an OT to tell us what to do, and she did. We have done the OT at home. It cost a little bit of money to buy the "stuff" we needed for it (big yoga ball, swings, special skin brushes, etc.) but it was by far the cheapest option. "The Out of Sync Child" was also a great resource for ideas on how to handle the OT yourself.

The only warning that I would give you is that this is a JOB for you, not just a hobby. It is like homeschooling - you have to take it seriously and make time in your day for it. Otherwise it's just too easy to let it slide.

Well, I hope this helps some. Let us know how it goes.