It's interesting to think about the fact that I became a special needs mom the second my youngest son was born; I just didn't know it yet. He had some health issues after birth and spent 10 days in the NICU. His first year of life was rough for everyone, as he rarely slept more than a few hours at a stretch and we could not figure out why. He was seen by numerous specialists who ruled out some diagnoses and gave him others, none of which my husband and I agreed with. We both knew something was going on, we just didn't know what it was.
As time passed, he met all of his milestones on time except one. He didn't really have much to say. At first, we thought it was because he has an older brother who likes to speak for him. He had 2 sets of ear tubes and his adenoids removed, which we thought would help his speech. Fluid in the ears would make everything sound funny and could delay speech. But as he got older and was still not talking very much, we had him evaluated. His speech was delayed, along with a few other skills, but his speech was our biggest concern. He started speech therapy at 2 1/2 years old. But I did not see myself as a special needs mom.
Later on, he aged out of his first speech program and we had him evaluated for another. He qualified for that and also began receiving private speech therapy at home. We noticed that he did not eat much and would often refuse lunch at daycare and dinner at home. He would eat certain foods, but they were limited. Feeling like he was just going through a phase, we still served him what everyone was having for dinner whether he ate it or not. But he wasn't gaining weight. From January 2014 to December 2014, he didn't gain any weight at all. Our pediatrician tested him for food allergies, of which he had none. The next step was evaluation for physical therapy and occupational therapy to rule out (or include) any physical or sensory issues. But I did not see myself as a special needs mom.
He ended up qualifying for both services. Now we were up to 4 types of therapy: private speech, speech through the public school district, physical therapy (PT), and occupational therapy (OT). This totaled 9 appointments a week. I was so tired from making sure he got to all appointments, frantically trying to schedule all of his appointments every week so that there was no overlap, that I didn't even have time to see myself as a special needs mom.
After about a month of OT, we realized the only therapy he was really getting was fine/gross motor skills, which include things like putting beads on a thread, picking up small items, etc. We did not think this was what he needed. We really felt like he had some sensory issues and after I talked to my aunt, who is an OT in another state, everyone agreed we needed a second opinion. So I started researching OT clinics that have equipment in the facility to do sensory OT therapy. The OT he was getting was in our home, so all of that equipment was really not available to him. I found a place and we were able to get him in for another OT evaluation. But I still did not see myself as a special needs mom.
After his second evaluation, it was clear from talking to the new OT that he has some sensory issues. I asked her if we were justified in thinking that he needed the sensory therapy (versus the motor skills) and she replied, "Yes." That, my friends, is the moment I became a special needs mom.
It was that moment because I finally had confirmation of what was going on with my son. I had known for some time that there was something a little off for him. I could tell that his "picky" eating was different from the phase my older son went through. I could tell that his meltdowns were different than his older brother's. And now, I had someone who could tell me why. I also realized in that moment, that this was something we were going to deal with for the rest of his life. Eventually his speech with catch up and he will probably no longer need speech therapy. He has already been discharged from PT, and even though he has flat feet, it's not bad enough to keep him from being active. So there is really nothing else for us to do in that area.
But this, the sensory issues, will be with him forever. He will always have aversions to some things. With therapy he should be able to manage them, but he's going to sense things in a way that is different from me. I cannot ever understand that, but as a special needs mom, I have to help him understand it for himself. It is now my job to help be the best he can be, while trying to enter his world, which is one I can never fully know.
I want all of you NTPM's out there to know a couple of things that I have learned from this experience so far. First, if you feel like something is going on with one of your kiddos, whether it's behavioral, medical, or something else, DO NOT GIVE UP. I can't tell you how many doctor's and specialists we've seen who probably thought I was nuts because I kept insisting something was wrong and I knew it wasn't a dairy allergy or acid reflux. Keep pushing until you find someone who will listen and believe you. You will find them, it just might take some time. Because once you do, everything changes. As soon as the OT told us her findings, it explained everything that had been going on in my son's life. It all made sense. And if you keep pushing, you will find that, too.
Second, if you have a special needs child, DO NOT BLAME YOURSELF. I know some of the mom's I met in the NICU blamed themselves for their child being there. Some of you may feel that way. You get a case of the woulda, coulda, shoulda's. Don't. It is NOT your fault. Your child was given to you because you are the only one who can fight for them, take care of them, and be their advocate. I never blamed myself and I really can't explain why, but I think it's because I knew I did everything I could to take care of him before he was born and I was prepared to do whatever if took after he born. It didn't matter what happened, he's my son.
Lastly, if you do not have a special needs child but know someone who does, HELP HER. Be there to listen if she's frustrated and needs to vent because no one else is listening. Ask her if there is anything you can do, even if it's just go for a cup of coffee or cook dinner for her family. Offer to drive to appointments one day or take her to get her nails done. Never judge her for her children or their behavior. Let her know you are there for her, you love her and her kids. Similarly, if you have a special needs kid and you know someone else who has a special needs kid, support each other, too. Don't be afraid to ask for help and don't be afraid to take it when it's offered.
Every mom thinks she has the perfect child and every mom is right. And you know what? It's OK.
