Hi I am new to the group and have a few questions for people.....

Niki - posted on 02/20/2009 ( 11 moms have responded )

30

5

4

I have an 8 month old daughter who just qualified for B-3 services (at first they told me she wouldn't but now she has both OT and PT). I would consider her to be rolling now not totally successfully to get places but she is rolling. She is working on sitting but can't be left alone for fear that she will fall over. We are now working on knee standing too. The PT is seeing her because her trunk is tight. The OT is seeing her for "vestibular and sensory issues" (no dx has come yet as the eval was done almost 2 weeks ago and it lasted 2 1/2 hrs). She is also questioning lactose intolerance and reflux. Today has been 1 week that I have been off of dairy (I am BF). I am not sure if I am seeing a difference, I want to so I am trying to. She gets sick very easily with rotation, needs to have a routine, and doesn't mold into you (just to name a few). I am wondering what anyone saw in their child/children at this age and if this sounds familiar. I gave you the short story of my little girl otherwise this would be longer. If you care to hear more I can expand.

11 Comments

View replies by

Niki - posted on 02/23/2009

30

5

4

You ladies are so awesome and give me so much hope. I know what you mean about crying to friends (sometimes I feel like they have had enough though!). It is frustrating because I have been told that I should have "caught this sooner or I should have been able to fix her" because I am one of "those" OT people. Talk about making me feel horrible! Sometimes I don't think people think before they open their mouths. So far I am happy with the OT BUT I asked for her specifically because she is the best. I didn't want to get stuck with someone that didn't know what they were doing. She is my daughter and I only want the best for her. I am not so sure of the PT, that is still up in the air. I would like her to come more than once a month. I am going to talk to her. I think that Estella would make much more gains. Just like you said.... they said PT only needed to come once a month because, "well you work in the therapy world". That frustrates me because then why is the OT coming twice a month?? She (OT) was going to be coming more except that Estella is going to the UW the months of March and April once a week for "therapy" with the OT students. You are definatly right... mom's know best, they know when something isn't right. Thank you all for listening!!

Siobhan - posted on 02/22/2009

27

4

7

Dear Niki,
One of the most frustrating things about sensory is that it can encompass so many different symptoms. One child can not stand to be touched and the other can't stand NOT to be touched, and they both qualify for "sensory" issues. This is one reason why the medical community has been so delayed in recognizing SPD - it does not fit easily in any one box. So, what does that mean as a parent? Stick to your feelings, your intitution as a mom - it took me about 2 years and many a nights of crying to friends on the phone to finally put together the pieces that my dd had food allergies and SPD - then it took another few months to put all her services together and to really come to find the best possible set-up for her. It seems to have worked out - but there are always good days and always bad days. The great thing about this website is that all the moms here understand that sensory is not a contained disorder, but rather permeates through an extensive array of symptoms and behaviors. It sounds like you are on the right track.
Just remember, a mom knows best - if any doctor or therapist gives you the impression that they know more than you do - it is a red flag. Find another professional. Our pediatric allergist kept testing our daughter even though her blood work came back negative and she showed none of the most common food allergy reactions. Trusting my intitution as a mom, he preformed a APT on her and found that she was highly allergic to milk. While we were walking out of his office, he said, "If a mom says there is something wrong, I know there is." That is the doc you want working with a child who is outside the western medical model.
2. Be a squeaky wheel - keep calling. When our daughter first was tested for SPD, she did qualify but all I was told is that she was doing well with what we were doing at home (they did not give us any specifics as to what we were doing right) and gave us a handout to go off of. The case worker said the OT would follow up with us. Only after talking to a few other specialists did I discover that this was inappropriate. I called them back (the state) and asked for another evaluation - this time I was prepared and, because my daughter was receiving private therapy, I was equipped with the information I needed to know and what I expected from the agency. Now, our daughter has an OT who comes to the home and works collaboratively with our private OT to design and implement a sensory diet and a appropriate environment for our home. I have learned that if you let them, they will push you aside. Stay strong, yet polite and you will be more successful than not.
Best Wishes and hang in there. You have a lot of moms supporting you.

Niki - posted on 02/22/2009

30

5

4

Thank you Jennifer for all of the kind words. No neither one of them hasn't come to therapy (my hasband came to the initial screening). I got her into a peds play lab at the UW with the OT students. I asked him what he thought and he said as long as you can get her there it's okay. Our daycare provider is so encouraging and we look at the little improvements as big ones. We don't always so how far behind she is until someone brings it to our attention then we are "oh man!" But we are very happy for her and I do pray for her and am happy for her. We tried so long and hard to have her. Whenever I start to get sad I need to keep telling myself that at least she is here, she smiles and me and she gives me kisses (well big wet ones and bites my face). You are right if people don't understand they are missing out on a great girl! I don't think his mother will ever understand but that is her... she is a bitter/mean person. I am so glad that I found this site and all of you guys.

Jennifer Miller - posted on 02/21/2009

82

24

33

Also, tell your family and mother-in-law that if your child was diabetic, you would have to watch their sugar. If they personally have high blood pressure or high cholosteral, they have to adjust their diet. Everybody has to deal with something. You can tell them about me if you want, and tell them about all of my allergies.... my husband has been very supportive and has even tried my food and found that its really good for the most part. As for the overstimulation, Keep a journal and write down where you were, what you were doing, how she overracted and what time of day. Very soon you will find patterns to avoid. Seriously, this works really fast. Logan is 3 and still doesn't sleep through the night, but its better. I know some moms that their kids are so bad the doctors prescribed a certain medicine (they only slept an hour or 2 at a time). But food does amazing things to our bodies and we don't think about it, we just shove what tastes good to our mouth, and don't care if it makes us overweight, have high blood pressure or changes our mood. For me, if I eat Gluten, I am spacey for hours and swell (esp my hands and face) and have stomach cramps. Other foods gave me headaches, or made me tired. It is amazing when you take it out of your diet, but it takes time to see the results. I know its tough! I know its sooooo easy to slide into the old habits. But you WILL pay for it! Please know there are others out there who are fighting the same fight, keep the faith!

Jennifer Miller - posted on 02/21/2009

82

24

33

I am so sorry your family is not supportive. My husband is and my family is, but they don't always follow the routine or therapy. Has your husband or mother-in-law come to the sessions to listen/talk to the therapists & doctor. That would be a big help. I did that and it made them more informed and more sensitive. Talk to the therapist before had with your concerns over their attitude and lack of help and they are great at addressing it. It does get better, but remind your husband that your normal kid could get hit by a bus and have worse issues for life. You never know what is going to happen but you do the best you can. A positive attitude and thanking God for the blessings is key. If you think about all the crappy situations and problems, you are going to be a miserable cranky heap! Look at what she can do, look at how she improves at what she's not so good at. That's most important! Hope that helps!

Niki - posted on 02/21/2009

30

5

4

Thank you for the encouragement. There are times when I just want to say, "lets just have some dairy" (my husband isn't to supportive.... I can just imagine if this works how his parents will be). I am sorry to hear about your son and his talking. That is the highlight of my day when she is talking. Eventhough sometimes it is 5am.... I hope that it never stops! My husband keeps asking me if it will get better and if she will be able to live a normal life. I keep telling him, "Yes but we have to help her learn how." Thank you again.

Jennifer Miller - posted on 02/21/2009

82

24

33

Hey, I'm sorry things are so up in the air for you! My son had terrible reflux and was cut from breastfeeding to Allimentum (spelling?) with cereal mixed in. He was on several medicines to move his bowels and reduce the acid. He stopped trying to talk about 7 months (any noises) and even now at 3 years mostly makes grunting or nasil noises. He would not go on anything that spinned or lifted him off the ground. I have had some recommend going off Dairy, Gluten and Egg. It has helped him some, but my mom sneaks him "treats" that kind of mess that up. It takes up to 12 days for even a small amount of irritant food to leave your system so you probably won't see results for a month or more. I have multiple severe allergies myself so I can verify this. Keep your chin up! It does get better! We're here for you!

Niki - posted on 02/20/2009

30

5

4

Thank you Eileen. I fought with my husband on getting her services. I am a COTA and work in the schools so he said that I was just seeing these things. We just had the eval and she started talking about using the weight vest/blanket. A OT that I know at the university is going to talk to the Wilbarger's about brushing/jt compressions. I have been doing just the jt compressions after the infinity walk. She seems to like a "massage". I tell you, I now know how all of my families feel that I work with. There is NEVER enough time to do everything!! I will try the upside down thing more, it is just hard. She doesn't show you that she is starting to get to overstim and then all of a sudden it is to late (she gets sick). There is no crying, so red/white faced before hand, ect. Thank you, I am going to try and keep all of these. I look forward to "talking" to everyone.

Niki - posted on 02/20/2009

30

5

4

Thank you. I guess I "knew" that's the response I was going to get but I am always hoping I won't get. Does that sound horrible?? Constantly falling over??... she doesn't do that when she is wearing clothes that are REALLY loose on her. She can't stand tight close, jeans are out. I am wondering if she will have to go on reflux med, I haven't noticed that getting any better since I stopped the dairy but have noticed her "talking" more. I hear you with the screaming while putting her to sleep, my husband had to wear ear plugs! I nurse her to fall asleep and rock her (hmm, sucking and rocking?). I am hoping to find help, suggestions, encouragement with this group. I am sick of tell my family that this isn't something that she will grow out off. I am in the process of writing everyone a letter, to hopefully help them understand. Thank you, thank you.

Eileen - posted on 02/20/2009

2

11

0

The "doesn't mold into you" resonates with me. My SPD daughter is almost 5 yrs old now and was a preemie. I started getting my daughter services when she was just over 2 yrs old, so good for you for getting started early. I do find even now that she will respond to changes in routine and to the molding issue after she has a sensory diet ... massage, getting her to push you - - - it's almost like there is pent up energy in these kids that you have to release (it' s not obvious, this energy, but it's there -- its just directed inwards). Help her while she's this age to figure out how to direct/ release this energy . .you mention rotation -- but did you know that SPD kids can get centered just by being held upside down? Holding her on your lap and letting her fall back with her head toward the ground while you hold her hands will stimulate lots of the senses she needs to synthesize the stufff in her environment.

Jennifer - posted on 02/20/2009

28

22

1

That sounds a lot like my daughter at that age.  The only difference is that she did not get any kind of OT until 9 mos.  She would only sit in the tripod position and was constantly falling over.  They also had her on reflux medicine (cutting out dairy was discussed).  With everything that I am reading these are 'normal' for spd children.  I also had the pleasure of trying to get her to sleep by holding her while she screamed herself to sleep.  She also could not be taken out of routine.  She is 3 1/2 now and we have started OT again (we had to wait to get her into an spd OT).  I don't know if this helped, but this group does help to reallize you are not alone.

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms