We have neighbors behind us, a boy RJ going into 3rd grade (8), his sister Ally who is going into 1st grade. There's also a new neighbor (military) with a 7 year old boy, Sylas.

Unfortunately, Davin (my almost 7 year old) has been teaming up with either RJ & Ally, or the other boy Sylas, and "ditching" Daegan (my 10 year old, officially SPD). This greatly upset Daegan and was crying. Soon after they did that, the younger kids went to play in the wooded area between our two houses and left their scooters in our driveway. Daegan retaliated by unscrewing the handle bars on all their scooters. This is the point when I became aware of what happened. I had Daegan fix all the handle bars and apologize to them. I also had a talk with Davin about the fact that I disapprove of "ditching" etc.

This happened near the end of the school year. The next day was Monday and I saw my neighbor, RJ and Ally's mom, as she was waiting on her driveway for her daughter to arrive off the Kindy bus at noon. I assumed her kids had mentioned about Daegan's behavior to her so I talked to her about it. I told her that Daegan has SPD and that part of it is that he doesn't really know appropriate behavior responses in social situations, but that we are helping him learn and that I had made him apologize to her kids for doing that to their scooters.

Do you tell other parents or people who come into contact with your kids?

I don't want it to come across as making excuses for him, but it just seems like it might be good to give them a heads up just in case more things happen.

I think you handled it really well. I don't usually say much because my experience is people don't really understand and I have no concise way to explain it to get my point across, and they get uncomfortable with the conversation and tune me out anyway. I'm in an awkward place at my 5 year old's gymnastics and sometimes in our home school group, when things get loud or crowded or people are unexpectedly touching her and all of a sudden she's either trying to escape or upset or acting strangely. Or a friend's house she keeps all of her windows covered so it's nothing but flouresent lighting and her kids have tons and tons of toys with batteries that are all really noisy. I don't want to give people the impression that I expect them to walk on eggshells with her, but I do sometimes wish I could help them understand.

I think you handled it really well too. I have a very young son just diagnosed after some regression from hypothyroidism. He developed SPD as well... I have known something was wrong for months. He is only 9 months old, but had a ton of changes since his regression, not able to handle light, lound noises, very fussy and FTT now. I already feel like I am having to tell people about it so that he does not have a complete meltdown and i feel like so many people think I am making excuses or just plain dont understand it! It is so frustrating... and I am sure that it will only get tougher down the road.

When did you guys find out your kids had SPD? Any advice for me? Tyler is getting therapy 2 times per week for feeding and OT right now.

Thanks!!!! Ashlee

Ashlee I wish I would have had my daughter diagnosed at that age she certainly showed signs but it wasn't until she was three and showed motor delays that we could get a diagnosis. Before that the feeding issues and meltdowns were just dismissed as behavioral/parenting issues and I was too discouraged by them blaming my parenting and her behavior to advocate for us the way I should have.

My son was in 1st grade, 6 1/2 years old. I had never heard of SPD, the early signs seem obvious now in hindsight.

My son was colicky from 1-4 months old. I remember sitting in the rocking chair when hubby got home from work, baby crying and me crying! He hated tummy time, screamed and screamed.

He hit all his milestones on the later end (just barely in the normal range). Rolled over once around 6 months old then nothing for weeks or months. He crawled at 10 1/2 months, first steps at 15 months, then not much until 16 months. Didn't say many words until after 3 years old. Luckily I started sign language with him at 10 months old, he first signed back at 12 months old. Did that until he was almost 3. Highly recommend it--SPD baby or non-SPD baby! I saw the meltdowns my older nephew (2 at the time) had because his parents couldn't understand what he wanted (also had speech delay like my son).

I really wish I'd known about the SPD before I started potty training. I was so frustrated. Started training around 2 1/2 years old because that's when "the books" say to start. Tried every trick there is. Rewards worked for a day, but then they stopped working. Tried bare bottom, but he just would look at the floor and say, "Uh oh, pee-pee." and I'd have a lot of cleaning to do. He treated Pull-ups like diapers. After his baby brother arrived, I tried saying that diapers were for babies and big boys wore underwear. No luck. I really think that he either didn't feel the sensation of needing to go, or didn't connect that feeling with needing to use the potty. He was ~2 weeks from turning 4 when it finally clicked with him (accident-free about 96% of the time).

The sun would go in his eyes when he was in his carseat in the car and he would scream like he was being stabbed. Clipping his nails was torture for him and us. He didn't like his hair washed--had to speed wash through it while he cried. He hated hot food. I'd cook his dinner then put his food in the freezer for 5 minutes. He was always "shy" and very slow to warm up in new situations. Needed to watch the other kids first before deciding if he'd join in. Clung to me.

He was a terrible sleeper from birth to age 9 years. As a baby he wouldn't sleep unless he was touching me in some way. I breastfed him for a year and he never would take a pacifier, I was his pacifier. Of course everyone assumed i was spoiling him. As he got older, it would take him longer and longer to fall asleep. His worst was around 6-7 years old (around diagnosis time). A good night was an hour for him to fall asleep, bad night 3-4 hours. He would mostly stay asleep once he was sleeping, but getting him to sleep was awful! Things that helped him: routine, CD of ocean waves (worked as a white noise), joint compressions, weighted blanket...and therapy and maturity played a role too. By the time he was 8, it took him only an hour. By the time he was 9, it took an average of 30 minutes. He turned 10 in May and it takes him 15-20 minutes tops. He doesn't need the CD or the joint compressions anymore, and uses the weighted blanket only twice a week.

It was his Kindergarten teacher who had concerns at the spring parent-teacher conference. She said he was still parallel playing and not really interacting with the other kids. They brought in the school social worker to model behavior for him. Over the the summer he was evaluated for autism, but they said he didn't fit enough of the criteria. Kept searching for answers. School started an IEP, including OT and motor breaks. As a freelance editor, I edited the revised edition of The Out-of-Sync Child Has Fun. I realized that the activities they were doing at school were the same ones suggested in the book--and they were helping him. So I brought him to an OT center and he was diagnosed with SPD (and later anxiety).

Thanks for your responses. I am so happy that I have found this support site, really I am! I have been feeling so alone in all of this and a lot people do not understand what it is like! My own sister and Mom do not understand what I am going through and think I am "spoiling" my 9 month old baby... "He does not have enough play pen time, he clings to you because you hold him all the time, he's got your number"... "you need to do this, or that"... "we have had so many kids, this is your first baby...." I am sure you all can relate! After his regression, he could not handle much of anything, when before he was a decently well adjusted child. He did always have the belly issues, colicky from 1 to 4 months old like yours Lynn, and I too, would cry with him in the chair!!! LOL. I am so happy he is getting help early. I already rely on the white noise machine and right now, I have been bouncing him to sleep in my arms -- which is hard, because he does not like to "hug" or be held unless he is having a meltdown, so he flips from side to side trying to settle himself as I pace around the room. UGHHHH. In one sense, I guess it is good that he only weighs 16 lbs at 9 months or my back might just break!!! I am happy to hear all of the suggestions. Do you think it is too young to get him a weighted blanket? I have heard such good things about them and Tyler does need to do heavy work activites to calm his system. we are also doing the brushing and the joint compressions and i am already seeing more eye contact. We have also moved him to the GFCF within the last couple of days and i am seeing even more eye contact return from that too! THANK GOODNESS! I fear that he may be on the spectrum, but as I am getting therapy so young, I hope that he can be a much milder case, if that is the case at all...

Your advice is much appreciated! Thanks again!!! Ashlee

Ashlee I would try sitting on an exercise ball to bounce him, it will save his back and when he's older you can use it for Sensory Integration Activities. I don't mean to discourage you but in a few months the normal developmental sleep issues with becoming a toddler are going to meet up with his SPD and he's going to need that bouncing more than ever. I am wondering if swaddling him would be a little safer than a weighted blanked at his young age.

We are GFCF and soy free as well that has actually been the #1 most helpful thing for us.

I hate that your mom and your sister are being that way. I think somehow it's easier for extended family to believe you have parenting issues you need to correct then it is that their grandchild/nephew/ may have something 'wrong' with them.

(07-29-2011, 01:40 PM)AngelaVA Wrote: I don't mean to discourage you but in a few months the normal developmental sleep issues with becoming a toddler are going to meet up with his SPD and he's going to need that bouncing more than ever. I am wondering if swaddling him would be a little safer than a weighted blanked at his young age.

We are GFCF and soy free as well that has actually been the #1 most helpful thing for us.

Thanks Angela. I will try the exercise ball. Yes, maybe swaddling to get him to go to sleep. I do not want to form unhealthy sleeping routines. I guess I just feel so badly that he will cry and cry unless I bounce him, that I do it. Is this bad???? He used to self soothe by sucking his thumb but that all went out the window! Maybe I will try the swaddle again -- he did used to love that when he was little, and now I am finding that naps are getting shorter and shorter and he does not sleep well through the night. Any other sleeping suggestions? I already do the white noise and have black out curtains.

The GFCFSF - yes, we are soy free too. We cannot do soy because of his thyroid meds. They do not absorb properly with soy. Did you order any of the cookbooks/shopping guides? Any good resources there! ANGELA -- THANK YOU SO MUCH FOR YOUR HELP!!!!! You are so good to me already and I just met you!!!

Have a great night!!! Ashlee

No it's not bad at all, swaddling helps him organize his neurological system as does bouncing. Swaddle him as long as he will let you it's very good for him it's giving him needed sensory input. If he cries at first give him a minute and see if he'll settle, if he's truly upset and not calming of course unswaddle him though. You are meeting his needs not forming unhealthy routines. He will outgrow those things when he is ready, it may be later than other kids but he really will. My first daughter needed to be bounced to sleep until she was 2 but she did eventually stop needing it. She also slept with us until she was 3 but she did stop needing that as well. I PMed you a list of my favorite resources.

I like the swaddling idea. I'd worry about the weighted blanket since he's so little. Maybe a few years down the road.

Don't worry about unhealthy sleep patterns yet. Giving him what his body and brain need is important.

I was just thinking about it and I think I did the bouncing from 1-3 years. Had almost forgotten.

I hate that your family is saying those things. It's so hard when you feel so alone in this. Try to remind yourself that you are doing the best you can for your son. I know some of our family thinks we are spoiling our kids or giving them bad habits because we stay with them while they fall asleep.

I haven't tried the GFCF diet, I guess it feels so overwhelming to me.