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Thinking about talking to our doc...


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Okay, I'll start off by saying I have no clue what kind of advice I'm looking for. Maybe I just need to get this out. Here goes though.

My oldest daughter. *Sigh* She's 6 years old. There was a time when we were worried that she was autistic. She did not talk much at all until she was 4. She kind of stopped at 18 months and didn't progress much until around 3 1/2 or 4. At 4, she started talking a lot more. It was kind of like a gate opened up and the words were suddenly there. Even so, her receptive language skills were lacking at that point. If we tried to talk to her, she would either look at us like we were crazy or parrot something back to us that she had heard us say before. We did speech for quite some time. We also did some OT. She could barely hold a crayon/pencil at 4 1/2. She despised going to therapy though and pretty much refused to do much of anything while we were there. We decided to take a break for a bit to see how things went. This happened around the same time we decided that we would homeschool. I started working with her intently every single day. Her writing is probalby on par for her age. I can still see that she struggels sometimes with doing a lot at once, but we just adjust amounts as needed.

I quit worrying for a long time. She was progressing so well. I thought that since she was doing so well with schoolwork that everything was absolutely fine. She's reading at around a 2nd-3rd grade level. She catches on so easily. If she sees a word once, she's usually good on it. She doesn't require a ton of repetition. She is close to being done with SM 1A and doing very well. I guess I was measuring everything on school work. I am starting to see my mistakes. Her receptive language skills are sitll behind some but she has made a ton of progress. We model a lot in the home and read a lot. It really has helped.

Here's where we are having problems now though. She has SPD. That's what the OT told us at least. She can't stand certain clothes. It will turn into an awful fight. We have been dealing with this for a while. New things keep popping up now though. She seems to be a little on the OCD side. She was washing her hands incessantly recently. So much so that she caused an eczema flare up on her hands. We had to ban the sink unless she went to the bathroom or asked permission. We went to the park earlier this week. She fell in the dirt and completely freaked. She went into panic mode because I wouldn't let her go wash her hands. I brushed her off and told her she would be fine until we left. We ended up having to leave because of how awful it became.

I don't know if I am conveying everything through this writing as they really are. We have a check up scheduled this week and I have been thinking of what to say. I just don't know. Any advice or just support would be nice.

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Make a list of things that affect her (and your family's) daily life. Some things in isolation may be nothing or quirky, but a collection of behaviors might be worth digging into an evaluation.

You may want to make an appointment to speak to the ped without your DD in attendance, so you may speak candidly.

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That sounds like she may have anxiety issues. The panic when things aren't the way she expects them to be and need to be in control are very familiar. Please ask the doctor about it. As bad as it feels to watch your child struggle, it is worse to be the one who is struggling.

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I agree with zoobie. Also, you might want to consider a full evaluation with a psychologist/neuropsychologist. If there is more than one thing involved, it's often a good idea to get a deeper look, not just speech, OT, etc. separately. You want to know the forest, not just the trees.

 

Our psychologist told us that anxiety typically goes along with SPD--like two sides of the same coin.

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I agree with zoobie. Also, you might want to consider a full evaluation with a psychologist/neuropsychologist. If there is more than one thing involved, it's often a good idea to get a deeper look, not just speech, OT, etc. separately. You want to know the forest, not just the trees.

Our psychologist told us that anxiety typically goes along with SPD--like two sides of the same coin.


I do want to get the full picture. I feel like we are so blessed to homeschool because we can help her through these struggles. I want her to be able to hold her own as well though. Our check up is Wednesday. Are NP Evals ever covered by insurance?
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Evaluations will vary by insurance. Our insurance will cover a lot and doesn't require referrals--however, it's a high-deductible plan, so we have to suck it up and pay for it until we meet the deductible (we always fully fund our HSA and don't always use the balance, so it works well even if it seems backwards).

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My daughter was diagnosed with SPD at 2 and 1/2 years of age.  She is now turning 14.  She does have some mild OCD tendencies as well.   The best

thing we ever did was clean up her diet. She had colitis from dairy at 1 month old and though we weren't seeing intestinal symptoms when we let her have little bit here and there as she got older, I feel pretty sure it was affecting her behavior.  Also no artificial colors, flavors or preservatives.   Very limited sugar.  Her sensory issues went way down when we made these changes.  And when she eats something she shouldn't have we can tell a big difference.  Also read up on healing the gut.

A good book on SPD is "The Out of Sync Child".

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Your daughter sounds just like my son. His Pediatrician diagnosed him with PDD at age 3 and officially diagnosed by a neurologist with autism at age 7. He is now 22 and in his third year of college. He is a published poet and talented artist.

 

I found that the "label" of autism opened a ton of doors for him. For me, it was a confirmation of what I already suspected and was actually a relief. He was able to attend a private school for kids with autism from 3rd grade on. Don't be afraid of a diagnosis, it is not the end of the world, but the beginning of helping your child live to her fullest.

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Your daughter sounds just like my son. His Pediatrician diagnosed him with PDD at age 3 and officially diagnosed by a neurologist with autism at age 7. He is now 22 and in his third year of college. He is a published poet and talented artist.

I found that the "label" of autism opened a ton of doors for him. For me, it was a confirmation of what I already suspected and was actually a relief. He was able to attend a private school for kids with autism from 3rd grade on. Don't be afraid of a diagnosis, it is not the end of the world, but the beginning of helping your child live to her fullest.


We actually aren't scared of the diagnosis at all. We have actually been living with the assumption that she does have ASD. Watching her has made me realize that I have many of the qualities (and did as a child). Whatever is going on is what makes her who she is. I wouldn't trade that for anything.

Could you tell me how the diagnosis opened doors?
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The dx opened up speech, OT, PT and gave him an IEP that the school followed. In high school he was part of the "Stars" program which was a dual enrollment (for free) at the local community college. He stayed enrolled for an extra year in the high school and would take the bus from home to the high school, and then the high school would bus him to the college for several classes and then back home again. He went for three years (junior, senior and then stars years) and completed his Associates degree. The high school (private) had their own teachers that would stay at the college during the day to help the kids get to where they needed to go.

 

He was able to get all his basic college classes done this way and this past year he transferred to a different college (independently) to finish his Bachelors degree.

 

I have to say that although I LOVE homeschooling my kids, he was one that definitely benefited from being in the private school. And, since the public school transferred him to the private school, it was at no cost to us.

 

 

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