We had an evaluation for Baby M with our occupational therapist because he is almost 17 months and he still doesn’t eat much. He eats very limited purees and he nurses constantly, but he will not tolerate any solid food [or anything solid, really] into his mouth.
We have been battling the dr’s and insurance company to approve the evaluation, and it finally got done! Our pediatrician said that he was a bit delayed because he was a preemie, but that we should really only be concerned with the fact that he wasn’t eating.
We had our OT do a “screening” for him which was essentially fifteen minutes playing with him and seeing that he has a very extreme and clear oral aversion. Our middle son, A-Man has sensory processing disorder, so we knew the signs.
We went to Baby M’s official evaluation expecting to come away hearing that he had SPD and some ideas with how we could continue in occupational therapy.
You can imagine my surprise when we left with a request for prescriptions for speech therapy and physical therapy as well, and it turned out that Baby M not tolerating solid foods was the least of our worries.
Global Developmental Delay
Extremely Delayed Development
As it turns out, Baby M’s delays were not within the realm of typical, even considering his adjusted age. He was born seven weeks premature, and we have been told by his Dr that he would “catch up”. He does not really talk, he has just started saying “Mama” with a purpose this week.
He doesn’t attempt to self-feed. He doesn’t have any real interest in food. He can pull himself to standing, but he falls often and resists standing. His right side is a lot “lazier” than his left. He has motor planning issues and possible processing issues.
His sensory processing disorder is extreme. Essentially, he is delayed in every major part of his development, and he essentially acts like an infant rather than a toddler.
Another Insurance Battle
It took us nearly two months to battle with our pediatrician and our insurance to get Baby M’s OT evaluation. We are hopeful that the referrals for physical therapy and speech therapy won’t take as long, but the pediatrician has already sent the orders to the wrong clinic for physical therapy, and sent the speech therapy orders to a specialist in a completely different hospital which is in a different city. Urgh.
Baby M is almost 17 months old, and he needs to start therapies now, the sooner the better. Kids have a window for certain activities and milestones, and if they don’t learn the activity or achieve the milestone within that window, it doesn’t mean that they never will, it just means that it will be ten times harder.
Bottom line? Every week that we wait for therapy to start is likely adding two weeks to the therapy services he will need.
Overwhelmed Mama
I wish that my son’s pediatrician had told me to be concerned. I wish that she had told me that he was out of the “he’s a preemie” realm. I wish that I didn’t walk into the clinic thinking that we were just facing sensory processing disorder. I’m beginning to become a bit overwhelmed.
We are still waiting on A-Man’s official diagnosis of autism, but he has speech and occupational therapy weekly. Now Baby M will have speech, occupational, and physical therapy as soon as I bully the Dr enough. Plus we’ve been trying to add some preschool activities for A-Man [slowly, and at his pace].
Not to mention trying to keep up with homeschooling Mr. C. While it would be easy to say that Mr. C is four, so we’ll just put a hold on it til next year, at this point, I’m not. He should not be put on the back-burner because his needs aren’t screaming quite so loud.
So for now, I’ll drink lots of coffee. I’ll [try] to lean on my friends who offer help and support. I’ll binge-watch Netflix shows late at night when I can’t sleep. Occasionally I’ll go out for lunch with my best friend just to not worry about things for a few hours.
And things will work out. They always do.
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Hello! I found you at Love That Max! Your little one sounds a lot like one of my boys. He’s 24 now. He has high functioning autism. I understand your frustration and overwhelmed feelings very well! I am a homeschooling mom too. My first 5 children were all boys. I also have a 16 yr old daughter who has multiple disabilities caused by a brain tumor. I host a link up every Friday. I’d love for you to join us!
Sylvia recently posted…Special Needs & Homeschooling Blog LinkUp: It’s been a Great Week!
Don’t you just love Love That Max? I think that I could definitely learn a lot from you! My little guys are so young still, and I’m just starting out on this homeschool adventure! I will definitely check out that link up! I always love finding new blogs and ways to share and encourage with other homeschooling moms and special needs moms! Thanks for reading and sharing!
I’m so glad you shared your story with us! I hope you’ll become a regular!
Sylvia recently posted…Special Needs & Homeschooling Blog LinkUp: It’s been a Great Week!
Oh absolutely! I am always looking for new linkups! I hope to host one eventually, but I’m not brave enough for that yet! Thank you for letting me know about it!
Wow. It sounds like you are being challenged all the way around. But it also sounds as though you have a good sense of how to go about handling it to stay sane! I’m glad you have friends to support you in this. That’s really important. Years ago, when my daughter was diagnosed as bipolar, I didn’t feel like I had that so much. People cared- but I never felt like I could really talk to them about it. Even now that she doesn’t have it (long story), I don’t feel like anyone understands it! So hang onto those friends! God bless you dear one!
Carol recently posted…I Add Salt to My Food – and I’m not worried a bit!
Thank you for such an encouraging comment, Carol! It has been pretty challenging, but I’m just thankful that he is finally getting the services he needs. My friends are definitely wonderful. I definitely understand feeling like you can’t really talk about it because people don’t understand, though. It can be hard, and sometimes people’s “helpful” comments can really hurt! Many blessings to you! :)
I found you through Love that Max also. I am a homeschooling mom of 4 girls. Our 9 year old twins (born 6 weeks premature) have several disorders. Our pediatrician told us for years that they would catch up. I wish I had never listened to him. I trusted him and I now wish I hadn’t. The girls had early intervention services from birth to 3 years, but they didn’t seem overly concerned either. I wish I had done more, pushed more, and not trusted the professionals as much. Keep bullying the doctor. Our girls have weekly speech and occupational therapy. It took us way too many years to find the perfect place for them, but we have finally found it and they are making great progress. Good luck to you and your family :)
Tricia, that is so encouraging to hear! My youngest two are preemies, and they are also the ones that have all of the issues going on. I’m glad that I am not the only one who trusted their pediatrician too long, but I also wish that no other families had to bully for services. My middle son has dyspraxia, sensory processing didorder, a severe speech and language delay, and mild autism. It took us two years of fighting with the pediatrician who told us that we simply weren’t parenting correctly. Thank you for your encouragement and stopping by!
Have you contacted Early Intervention in your area? They can probably help with evaluating and providing therapy for you littlest one.
I was going to put him into the early intervention program for our area, but because my middle son is already seen by the pediatric rehab clinic and I know the therapists there, we figured it would be easier for them to go in the same place. We will be going that route, however, if the wait list for our therapists are too long. We’re pretty fortunate in that because his brother is already in, he goes a bit higher on the list. Also they take in the babies much quicker than the older kids, so we shouldn’t wait too long. Thank you so much for stopping by!
I found your blog through Love That Max. I’ve been where you are before. It’s so hard. We live in NZ where everything is done in the public health system. It’s a good system, but sometimes referrals take forever. Our boy Ian was 18 months old when he started regressing. It was a good 6 months before he even saw a pediatrician (they are specialists here) and another year before he had a child development assessment. Managing therapy appointments and life in general does become easier. You sort of get used to the busyness of life. Our 7 year old is atypical, but we also have 4 foster children. One of them, who is turning 3 this week, has significant speech delays and likely behavioral and cognitive delays as well. When you know that every second counts its hard to wait on doctors and therapists to make referrals, but it can be done. My best advice would be to stay vigilant. Know what you want/need for your child and just bug them until you get it. Find a support group, educate yourself, and try (I know it’s hard) to find time to just be a family. Every one says you must have alone time and you must have time for your partner–that’s all true too, but the most important thing is not to beat yourself up about any of it! :-) It sounds like you are doing the right things for your babies and having a little Mummy time as well. Try not think beyond the needs of the day. I’m going to add your blog to my list so I can follow it. Blessings, Bonnie
Bonnie recently posted…How Much Is Too Much?
Oh Bonnie thank you so much for your encouraging comment! I think that sometimes the best thing is that we know other mothers have been where we are, and that they’re “making it”. We have a pediatrician who does not believe that sensory processing disorder is real, and she simply believes that if we forced our children to do things (talk, eat, etc) that they would be fine. Luckily our therapists help us talk with her and referrals get pushed through. I can’t imagine waiting for over a year for my son to be seen, you are one strong mama! You are so right about just being a family. For a while I was so stressed out trying to balance all the kids needs (two kids have special needs, one kid is academically gifted) and making sure I was doing everything. The best thing I could really do though was take them to a park and let them play, or play Hungry Hungry Hippos because Fridays is family game night. :) Thank you so much for sharing your story, it is extremely encouraging to mamas who are new to all this like me!
Many blessings to you!
You know I think the greatest resource we have as special needs mother’s are other mother’s. You are doing an incredible job, it is a huge job to push through all of the tedious details and argue with those who disagree…a lot of people would be ok and even welcome the opportunity to give up or take it slower. Hang in there, one step and one day at a time.
Beth recently posted…Pull-ups: Politics, Religion, and Potty Training
You are so right! I think as special needs mothers, it can feel so overwhelming and like we are the only people who have gone through it. It is so encouraging to have a group of mamas who understand where you have been. We can share the little successes, (because most moms of typical children don’t really understand being excited that your child ate a new food, or looked in your eyes when he asked a question) and support each other through hard times. Thank you so much for stopping by, I really appreciate your comment! Have a blessed day!
Yeah, knew it was ‘not good’ when the pediatrician made a referral for some imaging and asked us to do it the next day (for a 6 week old), she wanted to make the appt for us right then. Additional tests/evals took longer – some of that was scheduling and some was holding off initial shunt surgery because later is better and sometimes avoidable (wasn’t avoidable, but hated the time waiting for that, but the decision was almost anticlimactic, have seen five shunt surgeries so far). I hated the shock and stress that we saw with two major lifelong diagnoses, one was fairly fast, one was very drawn out. I prefer fast and obvious diagnosis but one doesn’t get to choose – drawn out dx was partial seizures (only partially controlled a few years into treatment), I had figured abdominal migraine was more likely, was moderately surprised. Dealing with diagnosis takes a while either way, getting to a diagnosis is frustrating either way. Was less surprised when they stopped saying she’ll grow out of seizures. I’ve learned I’m very stubborn. I’m also tired. Minor stuff like hearing, developmental, sensory issues we have had unsatisfactory experience with health care, we’ve ended up doing a lot to address things on our own. Possible when kid is delayed but can eventually acquire skills or actually can hear but doesn’t respond to stimuli.
Oh yes. With my middle son, we got a fairly quick diagnosis of sensory processing disorder and dyspraxia. Now we’re on a waitlist for someone to say that he has autism. The process for getting that diagnosis is long, drawn out, and a headache. I’m so sorry that you went through such a difficult time getting your diagnoses. It does seem that health care focuses heavily on the “big name” things and can ignore the minor issues. Our state doesn’t qualify sensory processing disorder as a disability in any way, so the schools can’t even give IEP’s for it. We do a lot on our own to address issues as well, but it can be frustrating. Thank you so much for sharing your story here! I hope you stop by again! Have a wonderful day. :)
Yes. We went to China to adopt a 23 month old with “undescended testicle, delay” and came home with a profoundly handicapped child. It has been a long, hard 18 months since then. Therapy 3X/week in our home until he turned 3. Now he’s in a self contained special needs preschool class, where he receives his therapies, which helps clear up my schedule quite a bit. We’re waiting on genetic testing results, but in the meantime, we know a lot of what it’s NOT, but very little of what it IS. He’s come the farthest in feeding therapy. When we got him, he couldn’t chew. Now he can stuff food into his mouth with a whole hand (but not a pincer grasp), and sometimes hold and use his own sippy cup.
Shecki @ Greatly Blessed recently posted…Always On My Mind
Oh what a blessing that he has been progressing so far! And can I just say thank you so much for adopting a child with special needs. So often these kids are skipped over because they are not “perfect”. It breaks my heart. We do have the option for my oldest son to be in a preschool for children with developmental delays. I homeschool my oldest son, though, and I don’t want A-Man to be without me for that long while he can’t effectively talk. He can’t tell me what happened at school, and I’ve heard from many of my friends with children in the preschools in my area that the non-verbal kids can get blamed for things by the verbal kids because they can’t defend themselves. Again, that’s just in my area where schools are understaffed and the budget for special education is really tiny. They also only offer 15 minutes per week per therapy, so he gets more doing the private therapies. I’m so glad that the preschools are helping your son, though! I can understand how frustrating it is to know everything that it’s not, but not know what it is. Thank you so much for stopping by and sharing your experience!
I was living with my special needed brother in our home for long time, in the same way like my mother with her brother. Now, I have my son and daughter. He has rare illnes of CNS. So, he can´t walk, his sitting is less safe than normal. His mental delay is “only” one or two years, but he has horizontal nistagm and has to use glasses. I consult a lot of doctors and we visit physiotherapist, but they are only consultants, the main work remains for us – me an my son. I know only this type of living, therefore I forbid myself feeling injustice. I think, my son is worse phisicaly than my brother, but his mental condition is better. We are training all everything useful at home and visit special family center. My son is a great fighter. I always support, encourage and praise my children. But I´m afraid my son will stop trying, until he realises his illnes is incurable and too restrictive.I only hope his constant enthusiasm and I wish this happines also to you!